Posts
Happy New Year!
We had a wonderful Christmas. ben got to open all presents which he thought was great. Tyler just had fun playing with the presents. We traveled to one christmas this year and Tyler did great! We were really happy with the way things went this year compared to last year.
Tyler seems to be really quickly picking up signs. These are the signs he's learned over the past 3 weeks.
table
elephant
gorilla
airplane
fish
elephant
cow
car
train
water
cereal
bus
horse
He used to learn one sign about every 1 to 3 months, so to pick up that many in 2 weeks is astounding. Some we've been working on a long time< but some we've only worked on a few times and he got it. we increased his B12 shots recently to every 2 days instead of 3 and we are wondering if that is part of the reason.
Happy New Year to all
Wednesday, December 31, 2008
Wednesday, December 24, 2008
12/24/08 Christmas Eve
Merry Christmas Eve everyone! Ben woke up with a cough yesterday and today Steve says he has a cough and congestion and does not feel well. Sigh.. I think we had almost a full 2 weeks of health.
So it's so weird how I talk about something in the blog and then the next day something I'm talking about shows up in the news. I belong to a lot of autism list servs and they send out all kinds of links to news articles if you are wondering how I have time to look up all that stuff, I don't, I'm lucky as they get emailed to me:) Anyway, here is an interesting story... it shows what can happen if you do not address autism as soon as possible.
Seal Beach, California (CNN) -- The Bilson family is like many other
families: three kids, a cat, and a small, lovely home with lots of
family photos and carved wooden wall signs with sayings like "Live,
Laugh, Love."
But step inside their house after 4 p.m. most weekdays and you'll want
to cover your ears because of the noise -- the screaming, to be exact.
These are not the shouts of sibling rivalry or parental annoyance. This
is the high-pitched, ear-shattering sound of a 13-year-old girl. More
accurately, it is the sound of a frustrated, irritated, very loud
teenager with autism.
Marissa, the middle Bilson child, was diagnosed with autism when she was
a toddler. Her mother, Mary, a nurse, knew something wasn't right early
on, when young Marissa's tantrums were off the charts and seemingly
unwarranted.
But during the first few years, doctors told Mary Bilson that her
daughter was fine and this behavior would eventually pass. They were
wrong on both counts.
Marissa's behavior has not passed; it has, in fact, become worse.
According to Bilson, Marissa and her tantrums rule the household. "I
don't want to hear her screaming and tantruming, so we pretty much let
her do what she wants," Bilson says. "We" means Mary, her husband, John,
and their two other children, Brittany, 15, and 6-year-old Brendan.
Keeping the peace means that, when it comes to Marissa, the rules are
different. She is allowed unlimited time on the one family computer. She
is allowed access to her siblings' rooms and possessions. She is allowed
to eat dinner at the computer instead of the family table.
But before you sit in judgment of the Bilsons, and suggest they just
need a firm hand to keep their middle child in line, consider one thing:
They are trying to cope with a child with severely impaired social
sensibilities.
"Do you think people who don't have children with autism know how tough
it is to deal with them?" CNN's senior medical correspondent, Elizabeth
Cohen, asked Marissa's mom in a recent interview.
"No," Mary Bilson replied. "And I don't see how they could."
She's right -- we can't, because many of us have never seen autism in
action.
Autism is described on the National Institutes of Health Web site as a
"developmental disorder that appears in the first three years of life,
and affects the brain's normal development of social and communication
skills." According to the Centers for Disease Control and Prevention,
autism and related disorders affect about one out of every 150 babies
born each year.
Autism manifests itself in many different ways. Although there are some
common threads, like language issues, repetitive movements and
difficulties connecting to others, specific behavioral patterns are
largely unique to the individual. "Children with autism are all
different; they are like snowflakes," explains Dr. Ronald Leaf,
co-director of the group Autism Partnership.
The one thing that Leaf believes they all have in common is that "they
are not expected to do enough." Leaf insists we have set the bar too low
for what we think children and adults with autism can do. "They are
highly teachable," he says. "You just have to have a good teacher."
A good teacher is exactly what Bilson was looking for to help her with
Marissa. She knew that her daughter's behavior needed to be reined in,
and it needed to be done now.
"She is getting older. She's 13 and her tantrums are louder and longer
than they used to be. It's just so inappropriate. It was OK when she was
much younger, but now that she's going to be an adult soon, she can't be
behaving this way," Bilson says with tired resignation.
But what could the Bilsons do? This family doesn't have a lot of extra
money, and most programs either aren't covered by insurance or have long
waiting lists. The costs are staggering, according to the Web site
FightingAutism. org. Families with autistic children can expect to spend
$30,000 annually to provide proper medical, educational and other
assistance necessary for dealing with an autistic child.
Enter Autism Partnership, or AP. This group, founded in 1994, offers
extensive therapeutic services to children and adults with the disorder.
One of its most unique programs is an intensive one-on-one, at-home
intervention service that is similar in scope to what happens on the
television show "Nanny 911." It's not cheap -- about $2,500 per day,
typically for a five-day period (with additional days on an "as needed"
basis).
Most of AP's work is grounded in a behavior modification technique known
as Applied Behavioral Analysis or ABA. Essentially, the method breaks
down behavior patterns, rewarding proper behavior while being careful
not to encourage improper responses.
And that is exactly how AP therapist Rick Schroeder hopes to reshape
Marissa Bilson's worst behavior. The group, which met Marissa while
working in her school, offered the Bilson family a free week-long
intervention with the proviso that CNN be allowed to record the process.
The week started off with a day of observation -- a day with lots and
lots of screaming and tantrums, that left Schroeder stunned. He had
observed Marissa at school where, he says, she was much less demonstrative.
But Schroeder is still eager and ready to tackle the challenge.
"I think the family is starting to realize something needs to change,
and that's very good," he says after his day of observation. "As far as
Marissa's behavior goes -- and the level that she is capable of going to
-- she's pretty much out of control, for sure."
So it's so weird how I talk about something in the blog and then the next day something I'm talking about shows up in the news. I belong to a lot of autism list servs and they send out all kinds of links to news articles if you are wondering how I have time to look up all that stuff, I don't, I'm lucky as they get emailed to me:) Anyway, here is an interesting story... it shows what can happen if you do not address autism as soon as possible.
Seal Beach, California (CNN) -- The Bilson family is like many other
families: three kids, a cat, and a small, lovely home with lots of
family photos and carved wooden wall signs with sayings like "Live,
Laugh, Love."
But step inside their house after 4 p.m. most weekdays and you'll want
to cover your ears because of the noise -- the screaming, to be exact.
These are not the shouts of sibling rivalry or parental annoyance. This
is the high-pitched, ear-shattering sound of a 13-year-old girl. More
accurately, it is the sound of a frustrated, irritated, very loud
teenager with autism.
Marissa, the middle Bilson child, was diagnosed with autism when she was
a toddler. Her mother, Mary, a nurse, knew something wasn't right early
on, when young Marissa's tantrums were off the charts and seemingly
unwarranted.
But during the first few years, doctors told Mary Bilson that her
daughter was fine and this behavior would eventually pass. They were
wrong on both counts.
Marissa's behavior has not passed; it has, in fact, become worse.
According to Bilson, Marissa and her tantrums rule the household. "I
don't want to hear her screaming and tantruming, so we pretty much let
her do what she wants," Bilson says. "We" means Mary, her husband, John,
and their two other children, Brittany, 15, and 6-year-old Brendan.
Keeping the peace means that, when it comes to Marissa, the rules are
different. She is allowed unlimited time on the one family computer. She
is allowed access to her siblings' rooms and possessions. She is allowed
to eat dinner at the computer instead of the family table.
But before you sit in judgment of the Bilsons, and suggest they just
need a firm hand to keep their middle child in line, consider one thing:
They are trying to cope with a child with severely impaired social
sensibilities.
"Do you think people who don't have children with autism know how tough
it is to deal with them?" CNN's senior medical correspondent, Elizabeth
Cohen, asked Marissa's mom in a recent interview.
"No," Mary Bilson replied. "And I don't see how they could."
She's right -- we can't, because many of us have never seen autism in
action.
Autism is described on the National Institutes of Health Web site as a
"developmental disorder that appears in the first three years of life,
and affects the brain's normal development of social and communication
skills." According to the Centers for Disease Control and Prevention,
autism and related disorders affect about one out of every 150 babies
born each year.
Autism manifests itself in many different ways. Although there are some
common threads, like language issues, repetitive movements and
difficulties connecting to others, specific behavioral patterns are
largely unique to the individual. "Children with autism are all
different; they are like snowflakes," explains Dr. Ronald Leaf,
co-director of the group Autism Partnership.
The one thing that Leaf believes they all have in common is that "they
are not expected to do enough." Leaf insists we have set the bar too low
for what we think children and adults with autism can do. "They are
highly teachable," he says. "You just have to have a good teacher."
A good teacher is exactly what Bilson was looking for to help her with
Marissa. She knew that her daughter's behavior needed to be reined in,
and it needed to be done now.
"She is getting older. She's 13 and her tantrums are louder and longer
than they used to be. It's just so inappropriate. It was OK when she was
much younger, but now that she's going to be an adult soon, she can't be
behaving this way," Bilson says with tired resignation.
But what could the Bilsons do? This family doesn't have a lot of extra
money, and most programs either aren't covered by insurance or have long
waiting lists. The costs are staggering, according to the Web site
FightingAutism. org. Families with autistic children can expect to spend
$30,000 annually to provide proper medical, educational and other
assistance necessary for dealing with an autistic child.
Enter Autism Partnership, or AP. This group, founded in 1994, offers
extensive therapeutic services to children and adults with the disorder.
One of its most unique programs is an intensive one-on-one, at-home
intervention service that is similar in scope to what happens on the
television show "Nanny 911." It's not cheap -- about $2,500 per day,
typically for a five-day period (with additional days on an "as needed"
basis).
Most of AP's work is grounded in a behavior modification technique known
as Applied Behavioral Analysis or ABA. Essentially, the method breaks
down behavior patterns, rewarding proper behavior while being careful
not to encourage improper responses.
And that is exactly how AP therapist Rick Schroeder hopes to reshape
Marissa Bilson's worst behavior. The group, which met Marissa while
working in her school, offered the Bilson family a free week-long
intervention with the proviso that CNN be allowed to record the process.
The week started off with a day of observation -- a day with lots and
lots of screaming and tantrums, that left Schroeder stunned. He had
observed Marissa at school where, he says, she was much less demonstrative.
But Schroeder is still eager and ready to tackle the challenge.
"I think the family is starting to realize something needs to change,
and that's very good," he says after his day of observation. "As far as
Marissa's behavior goes -- and the level that she is capable of going to
-- she's pretty much out of control, for sure."
Tuesday, December 23, 2008
12/23/08 Update
So Tyler's eye is finally almost healed and Ben bashed his teeth again :( We took the boys to the inflatable jump place and we were playing in one that was sort of obstacle course and I feel backwards and Ben was behind me and he fell forward and bam.. his teeth hit the back of my head. immediately black and blue gums, bleeding and split lip, poor guy. Those darn teeth are just destined to come out early! So we spoiled him and he got a "sundae" whcih was really just whipped cream at big boy and some mac n cheese.. a little embarassing as he was bleeding as he was eating, poor kid. However, TYler did amazing out to eat. We took Steve's laptop so we could play DVD's for Tyler. We rarely get to go out to eat as a family as it's so much work just to get Tyler to eat let alone keep him happy for longer than 10 mins but we keep trying as we know he needs to be exposed to new enviroments often. Anyway, the laptop idea was great, it's the best family meal outting we've ever had.
Tyler learned more new signs this weekend, whoo hooo. He added gorilla and cup to his reportoire of signs, yippeee. Over the holidays we are gonna try to get video of him doing the signs so you can all see how he does it and what it means.
Love to all, happy holidays.
P.S. Since I often post the million reasons I hate autism, i thought I'd post the top 10 autism characteristics.
1. Autistic People Rarely Lie
We all claim to value the truth, but almost all of us tell little white lies. All, that is, except people on the autism spectrum. To them, truth is truth -- and a good word from a person on the spectrum is the real deal.
2. People on the Autism Spectrum Live in the Moment
How often do typical people fail to notice what's in front of their eyes because they're distracted by social cues or random chitchat? People on the autism spectrum truely attend to the sensory input that surrounds them. Many have achieved the ideal of mindfulness.
3. People with Autism Rarely Judge Others
Who's fatter? Richer? Smarter? For people on the autism spectrum, these distinctions hold much less importance than for typical folks. In fact, people on the spectrum often see through such surface appearances to discover the real person.
4. Autistic People are Passionate
Of course, not all autistic people are alike. But many are truly passionate about the things, ideas and people in their lives. How many "typical" people can say the same?
5. People with Autism Are Not Tied to Social Expectations
If you've ever bought a car, played a game or joined a club to fit in, you know how hard it is to be true to yourself. But for people with autism, social expectations can be honestly irrelevant. What matters is true liking, interest and passion -- not keeping up with the Joneses.
6. People with Autism Have Terrific Memories
How often do typical people forget directions, or fail to take note of colors, names, and other details? People on the autism spectrum are often much more tuned in to details. They may have a much better memory than their typical peers for all kind of critical details.
7. Autistic People Are Less Materialistic
Of course, this is not universally true -- but in general, people with autism are far less concerned with outward appearance than their typical peers. As a result, they worry less about brand names, hairstyles and other expensive but unimportant externals than most people do.
8. Autistic People Play Fewer Head Games
Who was that woman, and why were you looking at her? I know I TOLD you I didn't mind if you went out, but why did you believe me? Most autistic people don't play games like these -- and they assume that you won't either. It's a refreshing and wonderful change from the Peyton Place emotional roller coaster that mars too many typical relationships!
9. Autistic People Have Fewer Hidden Agendas
Most of the time, if a person on the autism spectrum tells you what he wants -- he is telling you what he wants. No need to beat around the bush, second guess, and hope you're reading between the lines!
10. People with Autism Open New Doors for Neurotypicals
For some of us neurotypicals, having an autistic person in our lives has had a profound positive impact on our perceptions, beliefs and expectations. For me, at least, being the mom of a son on the autism spectrum has released me from a lifetime of "should" -- and offered me a new world of "is."
Tyler learned more new signs this weekend, whoo hooo. He added gorilla and cup to his reportoire of signs, yippeee. Over the holidays we are gonna try to get video of him doing the signs so you can all see how he does it and what it means.
Love to all, happy holidays.
P.S. Since I often post the million reasons I hate autism, i thought I'd post the top 10 autism characteristics.
1. Autistic People Rarely Lie
We all claim to value the truth, but almost all of us tell little white lies. All, that is, except people on the autism spectrum. To them, truth is truth -- and a good word from a person on the spectrum is the real deal.
2. People on the Autism Spectrum Live in the Moment
How often do typical people fail to notice what's in front of their eyes because they're distracted by social cues or random chitchat? People on the autism spectrum truely attend to the sensory input that surrounds them. Many have achieved the ideal of mindfulness.
3. People with Autism Rarely Judge Others
Who's fatter? Richer? Smarter? For people on the autism spectrum, these distinctions hold much less importance than for typical folks. In fact, people on the spectrum often see through such surface appearances to discover the real person.
4. Autistic People are Passionate
Of course, not all autistic people are alike. But many are truly passionate about the things, ideas and people in their lives. How many "typical" people can say the same?
5. People with Autism Are Not Tied to Social Expectations
If you've ever bought a car, played a game or joined a club to fit in, you know how hard it is to be true to yourself. But for people with autism, social expectations can be honestly irrelevant. What matters is true liking, interest and passion -- not keeping up with the Joneses.
6. People with Autism Have Terrific Memories
How often do typical people forget directions, or fail to take note of colors, names, and other details? People on the autism spectrum are often much more tuned in to details. They may have a much better memory than their typical peers for all kind of critical details.
7. Autistic People Are Less Materialistic
Of course, this is not universally true -- but in general, people with autism are far less concerned with outward appearance than their typical peers. As a result, they worry less about brand names, hairstyles and other expensive but unimportant externals than most people do.
8. Autistic People Play Fewer Head Games
Who was that woman, and why were you looking at her? I know I TOLD you I didn't mind if you went out, but why did you believe me? Most autistic people don't play games like these -- and they assume that you won't either. It's a refreshing and wonderful change from the Peyton Place emotional roller coaster that mars too many typical relationships!
9. Autistic People Have Fewer Hidden Agendas
Most of the time, if a person on the autism spectrum tells you what he wants -- he is telling you what he wants. No need to beat around the bush, second guess, and hope you're reading between the lines!
10. People with Autism Open New Doors for Neurotypicals
For some of us neurotypicals, having an autistic person in our lives has had a profound positive impact on our perceptions, beliefs and expectations. For me, at least, being the mom of a son on the autism spectrum has released me from a lifetime of "should" -- and offered me a new world of "is."
Thursday, December 18, 2008
12/18/08 Part 2
How timely.....please see the following article on CNN< http://www.cnn.com/2008/US/12/17/seclusion.rooms/index.html, it's about that 13 boy who hung himself (with a string the school gave him to hold up his pants) and it shows the room he was stuck in which is nothign what the parents thought "time out" was. See below for a few snipets from the story about other children who endured grueling treatment. I'll warn you, it's awful, just awful. This is why we do what we do for tyler!.
A Tennessee mother alleged in a federal suit against the Learn Center in Clinton that her 51-pound 9-year-old autistic son was bruised when school instructors used their body weight on his legs and torso to hold him down before putting him in a "quiet room" for four hours. Principal Gary Houck of the Learn Center, which serves disabled children, said lawyers have advised him not to discuss the case.
• Eight-year-old Isabel Loeffler, who has autism, was held down by her teachers and confined in a storage closet where she pulled out her hair and wet her pants at her Dallas County, Iowa, elementary school. Last year, a judge found that the school had violated the girl's rights. "What we're talking about is trauma," said her father, Doug Loeffler. "She spent hours in wet clothes, crying to be let out." Waukee school district attorney Matt Novak told CNN that the school has denied any wrongdoing.
• A mentally retarded 14-year-old in Killeen, Texas, died from his teachers pressing on his chest in an effort to restrain him in 2001. Texas passed a law to limit both restraint and seclusion in schools because the two methods are often used together.
A Tennessee mother alleged in a federal suit against the Learn Center in Clinton that her 51-pound 9-year-old autistic son was bruised when school instructors used their body weight on his legs and torso to hold him down before putting him in a "quiet room" for four hours. Principal Gary Houck of the Learn Center, which serves disabled children, said lawyers have advised him not to discuss the case.
• Eight-year-old Isabel Loeffler, who has autism, was held down by her teachers and confined in a storage closet where she pulled out her hair and wet her pants at her Dallas County, Iowa, elementary school. Last year, a judge found that the school had violated the girl's rights. "What we're talking about is trauma," said her father, Doug Loeffler. "She spent hours in wet clothes, crying to be let out." Waukee school district attorney Matt Novak told CNN that the school has denied any wrongdoing.
• A mentally retarded 14-year-old in Killeen, Texas, died from his teachers pressing on his chest in an effort to restrain him in 2001. Texas passed a law to limit both restraint and seclusion in schools because the two methods are often used together.
12/18/08
We have a new sign to add to Tyler's reprotoire, yeah! He now can sign "table" independently.. woo hoo.. he's learning so fast now. Not sure if it's school, the increase in B12, or the fact that we've been working on signs for over a year now but I'm so happy that it all seems to be coming together.
As for school, Tyler acts a lot different when it's me vs. dad who drops him off. With dad, he'll walk from the car all the way to the classroom and then go with the paraprofessionals without crying, with me, he doesn't like to walk in at all and he typically cries when I leave, sigh, it's so heartbreaking. Well today we had a bit of a standoff. When I got him out of his car seat and went to put him on the ground to walk inside, he kicked his legs up before I put him down,I said ok, mommy will carry you inside the door but then you need to walk. Once we got insie the door (it's a main hallway) I put him down (on his knees since he wouldnt' put his feet down) and we had a stand off of me saying "stand up".... crying, "stand up"...crying.... Then I decided to try to use his blanket as a reinforcer so I held the blanket up where he'd need tos tand to get it and I said stand up for blankie.. nothing but crying. when I'd go to pick him up eh'd just kick his legs up and not stand. I attempted to distance myself from him but couldn't go far as the floor is hard tile and if made enough at me he'd start banging his head, which is what happend. I had to block him from injurying himself twice so I couldn't really play hard ball cause I had to think of his safety first. Mind you there are people and kids walking by us during all this. It was actually nice to be in an environment that itw as completely socially acceptable for Tyler and I to be going through this stand off, whereas if we were at the mall, people would be going, what's wrong witht hat kid, why doesn't she just pick him up, etc. So anyway, we got lucky becase Tyler's Occupational Therapist went by and started to talk to Tyelr which I asked her not to do, i.e. she didnt' know we were at a stand off so I explained to her to not give him attention as he is misbehaving but that I could nto walk away as he was going to injure himself. SO she was great and stayed back so I could walk away.. he watched and cried (on his knees) as I walked away, got about 15 feet, he hadn't moved adn was still crying... I turned around and when he saw me coming back he stood on his feet which was immediately followed by a "GOOD BOY, GOOD BOY" from mommy and I gave him his blanket as soon as i got to him and sang him ABC's as we walked to class which is one of his favorite things to do. Yeah, thanks OT, mom perserveraed and Tyler didn't get hurt.
When I dropped him to the parapro I told her what had happend as it was obvious he had been crying and we were a bit late and she goes, we love parents like you! And they love us for the reasons I said before... a 26lb 2 year old refusing to walk, not a huge deal... an 15 year old refusing to walk and getting mad at you, much bigger deal. We dont' want to give into Tyler when he's throwing a fit, I placed a demand on him, i.e. you will walk when we get inside the school, and I needed to follow through with that demand or else he'd realize that he can get out of a demand in the future if he exhibits bad behavior, we dotn' want that. but now, it's my job to support him next time to make it a bit easier.. as long as you provide supports before the bad behavior then it's ok. OT had a great suggestion that I could sit him on the bench when we get there nad then eh can get up and walk when he decides he's ready which won't take long cause he can't sit still.. that way it's his choice but he's walking like I want him too. I'll try that after the break as today is the last school day until the new year.
As for school, Tyler acts a lot different when it's me vs. dad who drops him off. With dad, he'll walk from the car all the way to the classroom and then go with the paraprofessionals without crying, with me, he doesn't like to walk in at all and he typically cries when I leave, sigh, it's so heartbreaking. Well today we had a bit of a standoff. When I got him out of his car seat and went to put him on the ground to walk inside, he kicked his legs up before I put him down,I said ok, mommy will carry you inside the door but then you need to walk. Once we got insie the door (it's a main hallway) I put him down (on his knees since he wouldnt' put his feet down) and we had a stand off of me saying "stand up".... crying, "stand up"...crying.... Then I decided to try to use his blanket as a reinforcer so I held the blanket up where he'd need tos tand to get it and I said stand up for blankie.. nothing but crying. when I'd go to pick him up eh'd just kick his legs up and not stand. I attempted to distance myself from him but couldn't go far as the floor is hard tile and if made enough at me he'd start banging his head, which is what happend. I had to block him from injurying himself twice so I couldn't really play hard ball cause I had to think of his safety first. Mind you there are people and kids walking by us during all this. It was actually nice to be in an environment that itw as completely socially acceptable for Tyler and I to be going through this stand off, whereas if we were at the mall, people would be going, what's wrong witht hat kid, why doesn't she just pick him up, etc. So anyway, we got lucky becase Tyler's Occupational Therapist went by and started to talk to Tyelr which I asked her not to do, i.e. she didnt' know we were at a stand off so I explained to her to not give him attention as he is misbehaving but that I could nto walk away as he was going to injure himself. SO she was great and stayed back so I could walk away.. he watched and cried (on his knees) as I walked away, got about 15 feet, he hadn't moved adn was still crying... I turned around and when he saw me coming back he stood on his feet which was immediately followed by a "GOOD BOY, GOOD BOY" from mommy and I gave him his blanket as soon as i got to him and sang him ABC's as we walked to class which is one of his favorite things to do. Yeah, thanks OT, mom perserveraed and Tyler didn't get hurt.
When I dropped him to the parapro I told her what had happend as it was obvious he had been crying and we were a bit late and she goes, we love parents like you! And they love us for the reasons I said before... a 26lb 2 year old refusing to walk, not a huge deal... an 15 year old refusing to walk and getting mad at you, much bigger deal. We dont' want to give into Tyler when he's throwing a fit, I placed a demand on him, i.e. you will walk when we get inside the school, and I needed to follow through with that demand or else he'd realize that he can get out of a demand in the future if he exhibits bad behavior, we dotn' want that. but now, it's my job to support him next time to make it a bit easier.. as long as you provide supports before the bad behavior then it's ok. OT had a great suggestion that I could sit him on the bench when we get there nad then eh can get up and walk when he decides he's ready which won't take long cause he can't sit still.. that way it's his choice but he's walking like I want him too. I'll try that after the break as today is the last school day until the new year.
Wednesday, December 17, 2008
12/17/08
I know the quality of the picture isn't so good but I took it while stopped at a stop sign with my camera phone. Tyler got a black eye on Friday as you can see. He was extra overactive on Friday night. When he's like that, he'll just start running back and forth on the floor and the more he runs, the more unstable he becomes and he slipped and fell and hit his face on the windowsill in the kitchen. Thepoor guy had a gash on his cheek bone, his left eye was black and his right eye was yellow by the time he woke up on Saturday morning. This is a self stimulating behavior of which we do typically try to get him to stop doing. We either try to turn it into a stop/go game and work on his signs, or we try to make sure to play other rough housing games with him or if we are busy doing something around the house, we try to give him some really exciting toys to play with instead of running.Sometimes none of those things work so we are working with OT at school to get any more ideas of ways we can reduce his running. The poor guy is so little anyway, imagine the calories he's burning.
Speaking of calories.. Tyler is doing much better at eating at school, yeah! They were so wonderful to work with us on this. We had noticed when emptying Tyler's lunch bag every day that he wasn't eating nearly the amount of food at school as he was at home so we asked them to video an eating session for us so we could watch and give tips, I thinkt hey had the video that day or the never next day, they are so accommodating!! Anyway, we watched the video and send some tips to help get Tyler to eat (THANKS to CARRIE AND THE ESI STUDY where I learned all those things) so anyway they implemented our suggestions and now he's eating all his lunch, woo hoo! He also is beginning to touch more of his food w/o using utensils. I know that sounds strange, most kids go from picking up finger food and then their parents struggle to get those kids to use utensils; we struggle to get Tyler to touch different textures so that's one of his goals to touch his food. Anyway, he's starting to not only pick up his messy food, i.e. pizza yesterday (special dairy free/rice crust pizza) but he was using both hands to pick up different food. This is also a new skill as he typically tries to manipulate objects with one hand at a time but not two hands working simultaneously at two different tasks, yeah Tyler!
So these are the signs that Tyler knows and can use independently to label objects: Milk, lion, bear, hat, phone, all done, open, shut. He recognizes many more signs than this, he just doesn't do them on his own yet. We are going to video him doing each of these signs so that everyone that works with him who isn't completely familiar with signs, can recognize what he's saying. I had a dream he could talk last night, I love those dreams, they feel so Good but I just don't like waking up and realizing that it was just a dream. One day :)
Which brings me to my next point. I'm not sure how to explain this as I know I've tried in the past and unless you are in in our situation or see it on a regular basis, I think it may be impossible to understand but I'll give it another shot. I was speaking with someone yesterday in regards to a Christmas gift for Tyler and explaining some ideas for him and how we could use them as learning tools for Tyler and I realized how strange it must be to be on the other end of that email, not seeing Tyler each day and not knowing a lot about autism.. that person must be wondering, does Tyler ever just get to play with a toy without it being work? Is Tyler ever allowed to just be a kid. I have heard this comment before so I'll do the best I can to explain it. Tyler would not play with toys in a normal (functional) manner unless taught to do so, i.e. he would have chosen to turn over a play vehicle and spin wheels for hours, never even noticing anyone around him. If we had not intervened, he would have chosen to stare at a light on his piano and just keep pushing the same button to get the same light, repeatedly. When in "his own world" Tyler is not capable of learning & he's not capable of social interaction. Why is this a big deal? Tyler would not have learned how to eat normally unless we taught him, his health would be likely critical by this point had we not intervened at 13 mos. And now, if we do not teach him to feed himself independently and to be able to sit long enough to eat enough food for proper nutrition, not only will be have significant health problems on our hand but also, how many capable 5 graders do you see where someone is feeding them their lunch. Tyler has two working arms, hands and a fully functioniong oral system, he should be able to eat himself but just has to be taught. So first things first, Tyler's health is and always has been our #1 concern.
Secondly, we want Tyler to develop normal social and play skills, he will not do this on his own. For example, Tyler was playing with a toy the other day and Ben came over to play with the same toy, since Tyler didn't find the toy to be all that fantastic, he chose to avoid that social interaction and go play with something else. I pointed out to grandma what had just happend and how Tyler will "avoid" social interaction and she said, oh that will come in time. I said, actually it won't. None of that stuff will come naturally to Tyler, he has to be taught. He needs to significantly reinforced to play with other children and that won't happen unless we help set it up. So why is this important? Well we want Tyler to be able to form normal social relationships, not only will this help his self esteem as he gets older but it will also help keep him safe from bullying. Most kids with autism are bullied, the more high functioning and the more friends they have, the less chance they have to be bullied. I posted a story a while back about a child with autism who hung himself at school, their lives are very tough and we want to do everythign we can to help Tyler be socially accepted into the world.
Another reason that everything seems like work for Tyler is that we want him to be able to communicate with the rest of the world. Tyler is almost 3 years old and other than ma-ma and da-da does not speak; compared to Ben who speaks in full sentences. Imagine being Tyler and not being able to express your wants and needs. And even more frustrting is having people try to figure it out and you only know one way to get your point accross, bad behavior. Think about it, if Tyler keeps saying "uh, uh, uh" how many of you will know what he wants, you'll just keep trying to guess, if you even notice he's making a request, and by that time he'll be so frustrated he'll start banging his head into the flooor, biting his brother, or pinching your or any other number of very inappropriate behaviors. Those behaviors get quick results and when you have no other means of communication, this seems to have the best results for childrenw ith autism. It is our job to help Tyler find a more appropriate means of communication. In order to teach this, we need to have highly motivating/reinforcing items that Tyler wants so that he has a "need" to express himself for those objects. For example, Tyler lvoes his rice milk so when he wants his rice milk, he has to sign in order to get it. I won't get into the logistics of how to teach it but you get the point. Without proper motiviation to request objects of desire, he will not learn to speak.
So in essence, we can't just let Tyler go about his business, he will never talk, eat, or play with peers without us intervening. Life 30 years ago for the autism community was very different, many of those kids are now adults in institutions who are completly impaired and can cause great physical harm to themselves and otehrs. Tyler biting or hitting now, all 26 lbs of him is not such a big deal, Tyler at 14 years old when he may be bigger than me, that's a huge deal. I recently read the story of on mother who was struggling with the idea of institutionalizing her teenager because of the danger he's posting to his siblings and her. Even teh school was worried about her health and those kids are often locked into seclusion at school for the safety of everyone. if we do not intervene now, aggressively, this could be Tyler. That is just not acceptable to me. So as crazy as it seems to you all who do not live it day to day, most every thign that we do with Tyler, will in some way be a learning opportunity for him. In my mind, there is no other course.
In fact, god willing that we soon have better autism insurance, I plan to add more therapy into Tyler's life. He gets 25 hours at school and then what we do at home but really he should have closer to 35 hours of ABA therpy and I also want to add in more speech in addition to what we do at home. He's starting to give up his afternoon nap which will allow for more therapy time. Many adults with aspergers (high functioning autism) speak in seminars accross the country talking about their battle with autism as children, many of htem could not speak and remember really realy struggling to get words out and really trying and being frustrating because they so badly wanted to talk and couldn't. I hear those stories and I think, my poor boy, he's stuck in that world, it's my job to get him out. According to these adults, it's not his choice, he wants out, he watns to talk, he wants to play with his brother, he watns those things and just needs help. When you see kids who had severe autism as young toddlers and you see them now, playing and laughing and having fun advovating for autism insurance and all the treatments, you know it's the right thing. His path is not pre-determined, we can alter his path, so please support the journey, even if you don't understand it fully. There is nothing more important to me than the health and happiness of those boys, nothing.
Thursday, December 11, 2008
12/11/08 Update
I've discovered reason #426 of why I despise autism..... your child cannot tell you what is wrong with them when they wake up screaming in the middle of the night. Sure when infants wake up screaming/crying you check for the normal things, hungry, gassy, diaper, etc. But most near 3 year olds can tell you what's wrong, no matter how silly, example: Ben woke up crying last night cuase his hands were cold! So last night around 12:30, Tyler started screaming/crying. I went in to check on him and he was sitting up, I checked for vomit or any other problem and found nothing so I tried to lay him down and cove rhim up and pat him onthe back but he would not lay down. I turend on his star gaze lights and his glow worm and that did not work either, still crying. So I was torn with the what to do.... I know from training that it's not the best idea to get him out of his bed and soothe him as this will reinforce him to scream/cry next time until I get him out and console him and that in the long run is not best for anyone. Sometimes kids with autism do cry for no reason, most have trouble sleeping, we are very ver lucky Tyler is a good sleeper. Anyway, I made sure he was ok, attempted to soothe him w/o picking him up and ended up shutting the door and letting him cry. Sigh... It's so tough. I always wonder, what if something serious is wrong, he just can't tell me. I'd never forgive myself if I ignored a big problem. Luckily he cried himself to sleep and woke up a happy boy this morning. I yearn for Tyler to be able to talk. I often have dreams he talks. One day, I just imagine him saying, I want milk or any other simple request and when those words come out of his mouth, I don't know that I'll ever be able to leave him. I'll just want to hear everything he has to say and for fear of it being a dream or a fluke, I'll want to hold on to the moment as long as possible. What a great day that will be!
Read another mom's blog today and it's kinda my view on Ben..."Ezekiel's twin sister is less happy when I am doing more of Z's therapy, but this is where life is as of now, and in the end, she will be happier having a brother recovered from autism." Ben was having so much fun playing with the little girl at daycare when Ip icked him up, they are like brother and sister. I say to the daycare lady, this is the way it was supposed to be, they were supposed to be the best of buddies, inseparable, playing with eachother all day. We don't have that. They don't play with eachother at all..it is an incredible amount of work to get them to play next to eachotehr sometiems. So I'm sure it's hard for Ben, i.e. he wonders why Tyler gets to to school, but as the mom mentioned above, he'll thank me one day. Because I really really hope I can give him that playmate he hopes for. The bottom line is that it's nearly impossible for me to give everyone in the family (including pets) everything they need so the neediest just tend to get more of my attention and that's just the role of the mother I think. But yet again Ben looked at my face and held my checks and said, I love you so much mommy...s o there's no doubt in my mind he feels a lot of love from mommy too!
Read another mom's blog today and it's kinda my view on Ben..."Ezekiel's twin sister is less happy when I am doing more of Z's therapy, but this is where life is as of now, and in the end, she will be happier having a brother recovered from autism." Ben was having so much fun playing with the little girl at daycare when Ip icked him up, they are like brother and sister. I say to the daycare lady, this is the way it was supposed to be, they were supposed to be the best of buddies, inseparable, playing with eachother all day. We don't have that. They don't play with eachother at all..it is an incredible amount of work to get them to play next to eachotehr sometiems. So I'm sure it's hard for Ben, i.e. he wonders why Tyler gets to to school, but as the mom mentioned above, he'll thank me one day. Because I really really hope I can give him that playmate he hopes for. The bottom line is that it's nearly impossible for me to give everyone in the family (including pets) everything they need so the neediest just tend to get more of my attention and that's just the role of the mother I think. But yet again Ben looked at my face and held my checks and said, I love you so much mommy...s o there's no doubt in my mind he feels a lot of love from mommy too!
Wednesday, December 10, 2008
12/10/08
I have a friend who recently had a baby and had a few health scares. I told her parenting was one of the most rewarding, yet painful experiences you'll have ever. The love is so strong that that pain you feel when somethign goes wrong can just seem umbearable and the opposite as well. The love you feel when everything just seems right, is incredible. I had one of those moments last night. Both the boys made me tear up with happiness. Ben had me snuggle with him on the bed and he looked at me and said, Mommy, I love you so much! I said, oh Ben, you melt my heart! We had good snuggle time and Tyler actually laid next to me and stayed still for at least 3 mins which was amazing.. it helped that he was tired and I was tickling his belly but he just laid there so I sang to him and got good snuggle time. It was great and a perfect way to wind down because they had previously been having a ball with dad rough housing on the bed.
Anyway, I used sing a song to Ben and now he has it memorized. I didn't catch it all in the video and sometimes he's hard to undersatnd whne he's singing so here are the lyrics so you'll know what he's saying.
Good Morning, Beautiful
How was your night?
Mine was wonderful with you by my side
When I open my eyes to see your sweet face,
it's a good morning, beautiful day!
The first time he sang that song to me.. again my heart just melted. SO CUTE.
Ok, on to Tyler. He had a GREAT day at school yesterday. He is doing very well at staying involved in circle time and was babbling much more than normal they said. He also was doing good at his immitation skills.
On a small world note.. I ran into a girl yesterday that I had met at the verbal behavior workshop. She's a speech language pathologist at U of M and we got talking and she said they have a great summer program. Tyler will still receive services this summer but it will be more limited than it is now so it's a great contact to have, especially if insurance goes through by then! Right now, our isnurance will not pay for speech services until a child is 5 unless it is a result of an accident, unfortunately they won't accept the "vaccine injury" argument...s o here's hoping those bills go to vote and get passed because I really want/need Tyler to have as much speech as possible.
Monday, December 8, 2008
12-8-2008 Tyler Laptop
Here's the video of Tyler playing with the laptop. This video is very enlightening as it's the first time I noticed everthing around him is alphabet related. The little green square next time has leters you take in and out that makes the letter name and sound. The yellow bus is an alphabet bus with letters all around and then way in the background is an alphabet train, our boy loves his letters! We've been working for a week on learning the letters of the alphabet in sign language. He's doing great. I do hand over hand training for A,B,and C and then go through the rest of the song just showing him the letters. He loves it, and as of this weekend he's starting to watch my fingers and then watch his hands/fingers and trying to make the signs for the other letters. We are going to work on him knowing this as well as he does Lion, Bear, and hat (new sign mastered this weekend without prompting) so we can get him to reqeust it for his favorite toys. He loves his letter puzzle so he can request (MAND) letters for it or MAND letters for his Leap frog or his soon to be Word Wammer, he gets really excited when he gets his letters right.
The other thing I wanted to point out so you could all see what it looks like is "flapping".. it's quick in the video so you may not notice, you may chalk it up to just being excitnig but in essense that's when flapping normally occurs, when they kids get really excited or overstimulated. You'll notice it towards the end of the video as he faces the camera and is excited about his successes, we are too buddy!
We took the boys out to eat this weekend (packed a lunch for Tyler) and we realize it's getting increasingly difficult to go out in public with Tyler, difficult to keep him regulated. I am going to start plan more outtings to unfamiliar places but for short durations to really work on his behavior. He was very resistant to putting on his caot when we left the restaurant. Well there were a lot of things that were difficult but they were all tolerable and just part of the process. We packed a familiar lunch for Tyler so he'd be comfortable eating, we brought lots of toys, some stimmy some not to keep him entertained and then we sat in a booth so that he'd be somewhat enclosed by not strapped in (lots of planning involved. Tyler was very overactive, never sat down (maybe we try the booster chair next time and see if that helps) and was in a constant stage of pushing on me. You'll get that with kids on the spectrum, some can't stand to be touched at all or have anything near them and some long for that deep pressure/touch. Tyler is a mixture of both, some places he needs lots of touch and some places he hates to be touched. But as a parent, it can get very annoyign to have someone constantly pushing into you, walking on you. Until you see it, it's hard to explain. Proper response is to work to give him more deep pressure and teach him a way to request it rather than walking all over us to get it. And to not squeeze him after walking or suddenly he's being reinforced to walk all over you to get what he wants. So much to think about with every aspect of his life.
12/8/08
PLEASE HELP!
AUTISM INSURANCE LEGISLATION
ACTION ALERT
We need YOUR help!Contact House Speaker, Andy Dillon
Andy Dillon,
House Speaker
Contact Information
Phone
(888) 737-3455
or
(517) 373-0857
Fax
(517) 373-5976
E-Mail
andydillon@house.mi.gov
Website
http://house.gov.mi/adillon
Address
166 Capitol Building
PO Box 30014
Lansing, MI 48909
Please Call!
Your one phone call could change the lives of thousands!
In the eyes of House Speaker Andy Dillon your phone call represents 500 people, your written letter represents 200 people, and your e-mail represents 100 people.
Please help us make a difference and take the time to make one phone call!
Sign up to receive updates!
Click the link below to be added to our mailing list.
Greetings!
We need your help! The next step in our fight to get Michigan insurance companies mandated to cover Autism therapy is to have the bills voted on in the House of Representatives.
Please contact House Speaker, Andy Dillon TODAY (Monday, December 8,2008)! He needs to hear that you care about this legislation. Tell him that you want House Bills 5527 & 5529 put to a committee and floor vote immediately!
What do I say when I call?
Above all else, it is important for Andy Dillon to know why this bill is so important to YOU! Besides that, here are some main points you can discuss: 1. The autism community has a cost projection that shows this legislation will likely cost about .50% or less in premiums for policy holders. 2.Individuals with autism are the only group that have no coverage from any source. 3.There is no coverage, not even for the most evidence-based treatments. 4.Individuals with autism get excluded from virtually all insurance policies and the insurance industry has been able to perpetrate this discrimination without repercussion. It is time for this discrimination to stop! 5. Remember to stress why and how this bill will effect your life and the lives of your friends and family! 6.Tell him you want HB 5527 and 5529 to be voted on immediately!
7. Forward to your friends and family asking them to also take action.
"The future depends on what we do in the present."
~Mahatma Gandhi~
Thank you in advance for your support. Please foward this on to your friends and family members and ask them to make a phone call that could really make a difference!
Sincerely,
Autism Insurance in Michigan Committee
AUTISM INSURANCE LEGISLATION
ACTION ALERT
We need YOUR help!Contact House Speaker, Andy Dillon
Andy Dillon,
House Speaker
Contact Information
Phone
(888) 737-3455
or
(517) 373-0857
Fax
(517) 373-5976
andydillon@house.mi.gov
Website
http://house.gov.mi/adillon
Address
166 Capitol Building
PO Box 30014
Lansing, MI 48909
Please Call!
Your one phone call could change the lives of thousands!
In the eyes of House Speaker Andy Dillon your phone call represents 500 people, your written letter represents 200 people, and your e-mail represents 100 people.
Please help us make a difference and take the time to make one phone call!
Sign up to receive updates!
Click the link below to be added to our mailing list.
Greetings!
We need your help! The next step in our fight to get Michigan insurance companies mandated to cover Autism therapy is to have the bills voted on in the House of Representatives.
Please contact House Speaker, Andy Dillon TODAY (Monday, December 8,2008)! He needs to hear that you care about this legislation. Tell him that you want House Bills 5527 & 5529 put to a committee and floor vote immediately!
What do I say when I call?
Above all else, it is important for Andy Dillon to know why this bill is so important to YOU! Besides that, here are some main points you can discuss: 1. The autism community has a cost projection that shows this legislation will likely cost about .50% or less in premiums for policy holders. 2.Individuals with autism are the only group that have no coverage from any source. 3.There is no coverage, not even for the most evidence-based treatments. 4.Individuals with autism get excluded from virtually all insurance policies and the insurance industry has been able to perpetrate this discrimination without repercussion. It is time for this discrimination to stop! 5. Remember to stress why and how this bill will effect your life and the lives of your friends and family! 6.Tell him you want HB 5527 and 5529 to be voted on immediately!
7. Forward to your friends and family asking them to also take action.
"The future depends on what we do in the present."
~Mahatma Gandhi~
Thank you in advance for your support. Please foward this on to your friends and family members and ask them to make a phone call that could really make a difference!
Sincerely,
Autism Insurance in Michigan Committee
Friday, December 5, 2008
12/5/08
They work quickly...preschool has already given us a video of Tyler eating at school so we'll be able to review that and determine what's going on at school vs. home.
And wonderful news in the world of autism insurance..a nother state has joined on board... Illinois now has coverage for autism, Indiana already had a plan in place, hopefully Michigani s not far behind.
Senate Bill 934: Sponsored by Senator James A. DeLeo and Representative Karen May
Requires a group or individual health insurance policy, or managed care plan to provide coverage for the diagnosis and treatment of autism spectrum disorders
Coverage will be provided for a treatment for an autism spectrum disorder will include care prescribed, provided, or ordered for an individual with an autism spectrum disorder by a licensed physician, licenses psychologist, or certified registered nurse practitioner if the care is determined to be medically necessary. Including:
Psychiatric care
Psychological care
Rehabilitative care
Therapeutic care, including speech, occupational, and physical therapy
Pharmacy care
Applied behavior analysis therapy
Any care, treatment, intervention, service or item for individuals with an autism spectrum disorder which is determined by the Department of Health Care and Family Services, based upon its review of best practices or evidenced-based research, to be medically necessary.
Coverage must be provided for an eligible beneficiary under the age of 21
Coverage must be provided up to a maximum benefit of $36,000 per year (will be adjusted for inflation after December 30, 2009)
Coverage is not subject to limits on the number of visits to an autism service provider
And wonderful news in the world of autism insurance..a nother state has joined on board... Illinois now has coverage for autism, Indiana already had a plan in place, hopefully Michigani s not far behind.
Senate Bill 934: Sponsored by Senator James A. DeLeo and Representative Karen May
Requires a group or individual health insurance policy, or managed care plan to provide coverage for the diagnosis and treatment of autism spectrum disorders
Coverage will be provided for a treatment for an autism spectrum disorder will include care prescribed, provided, or ordered for an individual with an autism spectrum disorder by a licensed physician, licenses psychologist, or certified registered nurse practitioner if the care is determined to be medically necessary. Including:
Psychiatric care
Psychological care
Rehabilitative care
Therapeutic care, including speech, occupational, and physical therapy
Pharmacy care
Applied behavior analysis therapy
Any care, treatment, intervention, service or item for individuals with an autism spectrum disorder which is determined by the Department of Health Care and Family Services, based upon its review of best practices or evidenced-based research, to be medically necessary.
Coverage must be provided for an eligible beneficiary under the age of 21
Coverage must be provided up to a maximum benefit of $36,000 per year (will be adjusted for inflation after December 30, 2009)
Coverage is not subject to limits on the number of visits to an autism service provider
Wednesday, December 3, 2008
120308 Update
Yeah, Steve was able to get video of Tyler playing with the Thomas computer so now we just need to get it downloaded and then upload it here, it's so fun to see! He raelly likes it and holds still while he plays it and chooses to sit at a table during playtime without prompting (like a typical preschooler would). So we like that it helps promote appropriate body positining, etc. We have decided to get both the boys Leapsters for Christmas, as there are some games I really think Tyler would enjoy and once he catches on it will likely allow us to get out in public more with both boys and one parent. It's still quite tough to do as Tyler can get overwhelmed and break down easily, he requires a lot of support which leaves Ben just kind of hanging around adn then competing for that attention so it's tough to accomplish whatever it is that you set out to accomplish. Right now we try to keep tyler happy with play phones, remotes, etc. but it would be great for him to have something for him to focus on that also promotes learning and not stimmy behavior so we are really excited!
Tyler had a great day at school yesterday, but we are getting concerned at his lack of interest of eating at school. he is still a bit under the weather (I'll talk about health later) so I'm not sure how much of an influence that is having but since he goes to school every day and not just once or twice a week, it's important to me that he's getting the proper nutrition, he's such a little guy. I've asked that they videotape him eating at school so we can look at it and help trouble shoot or help give them tips of things we do to keep him eating. They allow parents to come in and watch whenever you'd like but that can often distract the kids adn I know I would be a distractor for Tyler so they also offer videotaping in lieu of being there in person.
We completed his IEP. Just wanted to let everyone in on a few of his goals for the year, I'm really really excited. First let me give you some of the informatino that was listed in his IEP as a summary of his current state.. kind of hard to see on paper even though we know it's true. "Tyler often appears to avoid sensory input in the classroom, decreasing his ability to get all the informatino he needs to participate in activities. The combination of needing additional input yet actively avoiding the input makes programming for Tyler more challenging when finding the balance of what he needs and what he will accept without being overwhelmed with input. In summary, Tyler's low registration and tendancy to avoid input, impact his ability to consistently attend to and participate in learning activities." Now keep in mind that these observations were made witin the first 30 days of school and it takes usually closer to 2 months for skills to generalize so they have since noticed some great immitation skills and such from Tyler but in general, this is his overall struggle. Ok, on to some of the goals.. the IEP is many pages long so i won't list everything.
1) Tyler will use two hands to complete tasks (currently uses 1 hand for most activities).
2) Tyler will complete 3 tasks independently, i.e. put blocks in, then move to puzzle, them move to some other activity. This will also help us at home if we set up systems/routines of activities to do while we are cooking or something (he often tries to pull our hand to help him play while we try to complete normal household stuff). If he has a routine to follow and complete then he can go about those activities (independently) while we complete our tasks.
3) Tyler will eat 10 bites of lunch independently. We are really excited about this one because it would be great if he was an indpendent eater by the time he was 3! It's a big goal though since we already don't think he's eating enough at school, we also had them add in that we want him touching his food more, he avoids contact with it, doesn't mind utensils but not fond of food being on him. In fact, if some food is hanging out of hsi mouth or on his chin, he'll use his teeth, lips, tongue and anything else he can to try to get it in his mouth without having to touch it with his hands.. it's kind of funny to watch.
4) They will start him on the potty training program. This is a long processing following a U of M expert and her program. I haven't read the book yet to fully understand it all but it has to do with charting his wet diapers and getting him used to setting on the toilet.
5) Tyler will follow 10 instructional directions given verbal prompts and pictures, ex: stand up, sit down, come here, stop and throw away. Stop is huge for us in regards to safety concerns and being out in public with both boys as if Tyler was running out in front of a car, and we yelled "stop" right now he would not stop.
6) Tyler will learn 20 new signs for desired objects and will sign for at least 10 desired objects in his sight. He is really enjoying signing and watching us sign for objects, he often requests us to sign for him and no longer resists us doing hand over hand prompting for him to sign. We are working on the alphabet now, he's really doing great and very interested so I'm excited about this goal.
Ok, that's a few of the goals that we are going to be working on in the next year. As we work on goals at school and home, we'll keep everyone in the loop as to the signs, routines, etc. so Tyler will have support in all areas of his life in meeting these goals, i.e. which signs, which toys, proper play, eating skills, etc. Thanks for supporting this and in general when you play with Tyler, always be thinking of ways to promote communication. Example: the boys love it when Steve plays" jump" with them on the bed. I asked Steve to give the game a name so that he can consistenty say do you wanna play "x" and then Tyler can get familiar with the name and hopefuly start to request it or an approximation anyway. Anyway, he has these certain jumpbs he does where he basically throws the boys on the bed and they love it. So this is a great opportunity to get Tyler to make requests because it's very reinforcing. So when he went to do the jump for the third time yesterday with Tyler I said.. pause and wait for Tyler to say "up" which he'll do if you wait for it. Every part of Tylers play or day can be made into a learning opportunity, you just have to constantly be thinking that way.
On to health.. we are all STILL under the weather. Ben was healthy thi sweekend but woke up stuffy today, Tyler and I were the ones that got re-sick last Friday and both of us now have it moving down into our chests so we have coughs. Steve got sick on Sunday and seems to already be getting better.. sigh, is winter over yet?
Ok, that's about all from me. Take care!
Tyler had a great day at school yesterday, but we are getting concerned at his lack of interest of eating at school. he is still a bit under the weather (I'll talk about health later) so I'm not sure how much of an influence that is having but since he goes to school every day and not just once or twice a week, it's important to me that he's getting the proper nutrition, he's such a little guy. I've asked that they videotape him eating at school so we can look at it and help trouble shoot or help give them tips of things we do to keep him eating. They allow parents to come in and watch whenever you'd like but that can often distract the kids adn I know I would be a distractor for Tyler so they also offer videotaping in lieu of being there in person.
We completed his IEP. Just wanted to let everyone in on a few of his goals for the year, I'm really really excited. First let me give you some of the informatino that was listed in his IEP as a summary of his current state.. kind of hard to see on paper even though we know it's true. "Tyler often appears to avoid sensory input in the classroom, decreasing his ability to get all the informatino he needs to participate in activities. The combination of needing additional input yet actively avoiding the input makes programming for Tyler more challenging when finding the balance of what he needs and what he will accept without being overwhelmed with input. In summary, Tyler's low registration and tendancy to avoid input, impact his ability to consistently attend to and participate in learning activities." Now keep in mind that these observations were made witin the first 30 days of school and it takes usually closer to 2 months for skills to generalize so they have since noticed some great immitation skills and such from Tyler but in general, this is his overall struggle. Ok, on to some of the goals.. the IEP is many pages long so i won't list everything.
1) Tyler will use two hands to complete tasks (currently uses 1 hand for most activities).
2) Tyler will complete 3 tasks independently, i.e. put blocks in, then move to puzzle, them move to some other activity. This will also help us at home if we set up systems/routines of activities to do while we are cooking or something (he often tries to pull our hand to help him play while we try to complete normal household stuff). If he has a routine to follow and complete then he can go about those activities (independently) while we complete our tasks.
3) Tyler will eat 10 bites of lunch independently. We are really excited about this one because it would be great if he was an indpendent eater by the time he was 3! It's a big goal though since we already don't think he's eating enough at school, we also had them add in that we want him touching his food more, he avoids contact with it, doesn't mind utensils but not fond of food being on him. In fact, if some food is hanging out of hsi mouth or on his chin, he'll use his teeth, lips, tongue and anything else he can to try to get it in his mouth without having to touch it with his hands.. it's kind of funny to watch.
4) They will start him on the potty training program. This is a long processing following a U of M expert and her program. I haven't read the book yet to fully understand it all but it has to do with charting his wet diapers and getting him used to setting on the toilet.
5) Tyler will follow 10 instructional directions given verbal prompts and pictures, ex: stand up, sit down, come here, stop and throw away. Stop is huge for us in regards to safety concerns and being out in public with both boys as if Tyler was running out in front of a car, and we yelled "stop" right now he would not stop.
6) Tyler will learn 20 new signs for desired objects and will sign for at least 10 desired objects in his sight. He is really enjoying signing and watching us sign for objects, he often requests us to sign for him and no longer resists us doing hand over hand prompting for him to sign. We are working on the alphabet now, he's really doing great and very interested so I'm excited about this goal.
Ok, that's a few of the goals that we are going to be working on in the next year. As we work on goals at school and home, we'll keep everyone in the loop as to the signs, routines, etc. so Tyler will have support in all areas of his life in meeting these goals, i.e. which signs, which toys, proper play, eating skills, etc. Thanks for supporting this and in general when you play with Tyler, always be thinking of ways to promote communication. Example: the boys love it when Steve plays" jump" with them on the bed. I asked Steve to give the game a name so that he can consistenty say do you wanna play "x" and then Tyler can get familiar with the name and hopefuly start to request it or an approximation anyway. Anyway, he has these certain jumpbs he does where he basically throws the boys on the bed and they love it. So this is a great opportunity to get Tyler to make requests because it's very reinforcing. So when he went to do the jump for the third time yesterday with Tyler I said.. pause and wait for Tyler to say "up" which he'll do if you wait for it. Every part of Tylers play or day can be made into a learning opportunity, you just have to constantly be thinking that way.
On to health.. we are all STILL under the weather. Ben was healthy thi sweekend but woke up stuffy today, Tyler and I were the ones that got re-sick last Friday and both of us now have it moving down into our chests so we have coughs. Steve got sick on Sunday and seems to already be getting better.. sigh, is winter over yet?
Ok, that's about all from me. Take care!
Monday, December 1, 2008
12/1/08
Hope everyone had a great Thanksgiving. Ours was fantastic but then Friday, both Tyler and I seemed to take a downward turn on our recovery from our illness that just keeps going on and on and on. So hopefully now we are back on the road to recovery.
On a good note, Tyler was great this weekend! We started teaching him letter signs this weekend and he really really likes it! He asked me to do it repeatedly and the first time I showed him, he was engaged with me for 4 rounds. Also, I sang wheels on the bus to him and I was sitting on the bed and he was just standing on the floor. When I got to the doors open and shut, he signed it all on his own the first time through without prompting. Yeah. Also, Ben got a Thomas the tank engine laptop game last Christmas. There are many activities you can choose in the game. One of them is to find capital or small letters. Tyler was doing this all weekend long. It would say, find the capital letter "a" and Tyler would push A. First I would repeat the question and then I stopped to see if he could follow the computers instructions and he could! He also got a lot of joy out of me and the computer praising him. I love that he's reinforced with social praise, he did not used to be this way.
On another note, we are considering taking him off some of his supplements. We had added about 6 or so in the last 8 weeks and have not seen any improvements in that time. We'll take him off and see if there is any regression, if there is, then we know they were benefiting him, if there is not, we'll most likely leave him off for a while. We fully plan to keep him on the digestive enzymes, multi vitamin, B12 shots (which we've increased to every other day) and melatonin as it helps offset the insomnia that can occur with the B12, but the other stuff we may fade out for a while. It's a costly and it add significant stress trying to get it all in to him every day and sneaking it in food that we don't feel is necessary if it's not benefiting him at all.
Which brings me to another note. I signed up for google news alerts that sends me an email a couple of times a day with articles that have the word autism and recovery in the story. I got two interesting ones over the weekend, one was a blog from a mother. Read it if you have time.
http://mickiesprogress.blogspot.com/2008/11/autism-treatments-come-with-hefty-price.html
On a good note, Tyler was great this weekend! We started teaching him letter signs this weekend and he really really likes it! He asked me to do it repeatedly and the first time I showed him, he was engaged with me for 4 rounds. Also, I sang wheels on the bus to him and I was sitting on the bed and he was just standing on the floor. When I got to the doors open and shut, he signed it all on his own the first time through without prompting. Yeah. Also, Ben got a Thomas the tank engine laptop game last Christmas. There are many activities you can choose in the game. One of them is to find capital or small letters. Tyler was doing this all weekend long. It would say, find the capital letter "a" and Tyler would push A. First I would repeat the question and then I stopped to see if he could follow the computers instructions and he could! He also got a lot of joy out of me and the computer praising him. I love that he's reinforced with social praise, he did not used to be this way.
On another note, we are considering taking him off some of his supplements. We had added about 6 or so in the last 8 weeks and have not seen any improvements in that time. We'll take him off and see if there is any regression, if there is, then we know they were benefiting him, if there is not, we'll most likely leave him off for a while. We fully plan to keep him on the digestive enzymes, multi vitamin, B12 shots (which we've increased to every other day) and melatonin as it helps offset the insomnia that can occur with the B12, but the other stuff we may fade out for a while. It's a costly and it add significant stress trying to get it all in to him every day and sneaking it in food that we don't feel is necessary if it's not benefiting him at all.
Which brings me to another note. I signed up for google news alerts that sends me an email a couple of times a day with articles that have the word autism and recovery in the story. I got two interesting ones over the weekend, one was a blog from a mother. Read it if you have time.
http://mickiesprogress.blogspot.com/2008/11/autism-treatments-come-with-hefty-price.html
The mother of this story ends her blog with , "Recovery comes with a hefty price, so with lots of money it's a real possibility, but without it, it's just a dream."
This is unfortunately so true and one that I said I would never let stand in the way of our goals for Tyler but I realize sometimes that I have no choice. If I had an opportunity to do everything I wanted for Tyler, our picture would be quite different. We'd still have Tyler in preschool as I really believe in the group activities, structured environment, based on verbal behavior teachings. We'd also have a private speech therapist working with him at least 3 times a week, we'd hire a private ABA consultant to work with Tyler in the late afternoon before dinner and we'd do music therapy, HBOT (oxygen treatments), etc. on the weekends with the help of our live in au pair who is has experience with children with autism and wants to get a degree in this type of work. I would do and give every supplement as instructed by the DAN Protocol as long as it's not hurting Tyler, we'd have all of Tyler's food sent to us to make sure he's getting the proper amount of calories, fat, etc. I'd not work so that I could spend the most time with the boys as possible and make sure they both get the love and education that they need. Our basement would be finished and be set up in an environment that promotes social interaction and both fine and gross motor skills. If I had my way, that's what I'd do. I don't want money to stand in the way of his possible recovery and I believe we've made very smart decisions based upon what Tyler needs and what we can swing financially. But I wonder what if.. what if.. I could do everything my heart desired for Tyler, would that be enough? I'll just never know cause we certainly will never have enough to do all those things. I can tell you that there are times I seriously consider moving us to a state where insurance covers treatments (ours doesn't even cover speech until he's 5, no OT, no ABA) where maybe Steve could get a job making just a little more money and I could stay home and make sure everyone had what they needed adn drive Tyler from appt to appt. But for now I feel like we are doing as much as we are financially able to do so we'll see how the next year goes. Which brings me to the next news article.
WPVI-TV Philadelphia Study shows families' financial strain from autism Sunday, November 30, 2008 4:19 PM By LINDSEY TANNER AP Medical Writer CHICAGO (AP) - November 30, 2008 (WPVI) -- More than half a million U.S.children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show. Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids' health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found."This is the first national survey that looked at the impact on families of having kids with special health care needs," said lead author Michael Kogan,a researcher with the government's Maternal and Child Health Bureau.The results are from a nationally representative 2005-06 survey of nearly40,000 children with special health care needs. These children have a broad range of chronic conditions, including physical and mental illness,requiring more extensive than usual medical care.A total of 2,088 children with special health needs had autism, which translates to about 535,000 kids aged 3 to 17 nationwide, the study author said.The study appears in December's Pediatrics, being released Monday.Autism typically involves poor verbal communication, repetitive behaviors such as head-banging, and avoidance of physical or eye contact. Affected children often need many more types of treatment than kids with other chronic conditions, including speech and behavior therapy and sometimes medication. Kogan said that may explain the disproportionate strain on their families.Jacquie Mace, whose 12-year-old son, Austin, has autism, said the study presents a "very realistic" picture of the challenges affected familiesface.Mace said she spends "easily $15,000 to $20,000 out of pocket" yearly on supplies for behavior treatment she provides for her son. She's still working to pay off a $7,000 bill for dental work Austin had last year. He has to be sedated and hospitalized for dental care because he can't sit still in a chair, Mace explained. Austin's health insurance doesn't cover any of it, she said. Some states require insurers to cover certain autism treatment while similar proposed measures are pending in others, including Illinois. Mace hasn't had to quit her job helping local families find autism resources, but knows of many parents who've had to leave work to care for their autistic kids. She is divorced - another common casualty, she said, of the challenges of caring for autistic kids.
Tuesday, November 25, 2008
11/25/08
Godbless my guardian angel, Amy!! She sent me the most wonderful message yesterday just before Tyler's IEP appt. It went as follows:
"Set the vision that his IEP two years from now will be transitioning to join Ben in Kindergarten- I know a mom of twins in Manchester who told me the kids 'can't tell her boys apart' in class as they are identical twins...Avery started out as full affected ,nonverbal autistic and now he's fully included and indistinguishable...AMAZING and it CAN HAPPEN!! :0)"
Read that message again....and again....until you all believe in your heart of hearts this can happen for Tyler and our family. Believe when you are with Tyler with all your might that this is his destiny and then let your actions and interactions with Tyler reflect your thoughts. Believing is not enough, Tyler needs actions! If you are visitig with Tyler and you see him pushign a button on a toy repeatedly seeming to be getting lost in his own world, find a way to engage him. Find a way to force him into our world and keep him there as long as you can. I have many many suggestions and will do my best to share this knowledge with everyone who wants to interact with Tyler. Touch Tyler as often as you can, he loves to be tickled on his belly and arms and hands and legs. He also loves to rough house and play chase. It takes an incredible amount of energy to keep him in our world so we'd appreciate all the help we can get!
So anyway, that's how I went into the IEP meeting, with the mindset that Tyler can and very will may be in a regular kindergareden class right along side Ben! How amazing would it be to see those two really playing, laughing and talking together!!! I can't wait for that day, just can't wait. So we set some pretty high goals for Tyler, in some cases, increasing the goals to higher levels as we believe Tyler could meet some of the goals fairly soon so we wanted ot make sure we set goals that were appropriate for an annual basis. It generally takes 1 - 2 months for skills to generalize into new areas/surrondings. Tyler's only been in school for a month and for a week out of that month he was absent due to illness so they weren't fully aware of all of his skills yet. I'll get into more details as to his goals when we get our first feedback. They provide a report on amonthly basis as to where Tyler is on his goals. They also monitor his regression after each break, such a christmas and spring break, etc. and then track how long it takes to get him back at the level he was at.
The teacher commented yesterday how they do a monster game in class and she tries to get the students to imitate her by raising their hand which indicates they want a monster. Tyler had never raised his hand before, but yesterday, he was the first to raise his hand to get a monster. He's really beginning to follow the routines and we discussed ways to help keep him engaged and be more independent. He's also just beginnning to sign "bear" independently and seems pretty proud of himself for doing.
Last night I began fading back the video reinforcer during meals. I was alone for dinner with the boys so I was trying to find a way to make sure Ben was super happy and busy so taht if Tyler got upset that Ben wouldn't also act out for attention. So Ben watched Gadagascar while I worked on meal time with Tyler. He did great. He ate for about 5 - 6 mins without any support other than me talking to him and signing with him, etc. Then he started to get restless so we added in some books for supports and towards the end of the meal we did need to add his alphabet/music toy, however, he was very patient with me when I'd take the toy away and make him stab his own food and feed himself with the fork before he got the toy back. He didn't' get upset at all at this demand. So we are gonna keep this plan for a while.. put in a video that Tyler doesn't care about so that it's not a reinforcer but one that Ben really really likes so we can make sure Ben is happy and then slowly but surely fade out the other prompts we've used to keep Tyler sitting.....Who knew that it would have taken him nearly 3 years to feed himself but that's my goal. By age 3 Tyler will be sitting on the big table with the rest of the family, without any type of restraint, and he will be able to eat his meal entirely on his own with the only support begin family interaction, i.e. singing and signing.... :)
Friday, November 21, 2008
11/21/08
So a quick update on the study. The lead investigator asked that we continue with the monthly assessments and the full assessment battery at what would be the end of the study for him in May. They are being flexible working around days where Tyler doesn't have school to schedule this appointments, so we were happy to help out. So looks like we aren't going to fully drop out anyway.
So we are gearing up to complete Tyler's first IEP (individualized education plan) for preschool. We are so lucky to be in such a supportive and knowledgeable school district as many parents often complain about how grueling this process can be. all the parents I've spoken too have had wonderful experiences with AAPS. This basically sets the stage for educators, therapists, and parents to agree upon what educational services are appropriate for Tyler and what goals we'd like him to achieve within in a certain time frame. Obviously our main concerns are Tyler's lack of vocal communication, his inability to hold/sit still, and his texture issues which I believe is what prevents him from eating independently.
You all are probably more knowledgeable about autism than the general population, many people think that everyone with autism is like rain main which isn't true, each person is very very different and only a small part of the autism population are considered "savants".. however I do always find it fascinating, those who are thought to have had autism such as Einstein and Newton. Here's a video of brief overview of the connection between Einstein and autism. http://livingwithautism.magnify.net/video/Einstein-The-Autism-Connectio What I like hearing in here is that Einstein didn't' speak til he was 4, OK, i don't "like' hearing that, however, people always says to us, "is he talking yet?"... I say no and they look disappointed, but I'm not. I mean yeah, I really want him to talk but he's come so far in terms of communication, it's just hard to explain that to people who do not fully understand all the steps of communication that must occur before talking can occur. Mind you, Tyler can understand A LOT of words and phrases. If I say, Tyler pick up your blanket, he will. In the car yesterday, I handed him back a piece of cookie and said, "Tyler, want cookie" and he looked when I said his name and cookie and grabbed it. Before he never would have even looked when I talked to him, I'd have to keep touching him until I got his attention and then find a way to get his attention to my hand so he could see the food cause he didn't understand food words, now he does. I'm also still amazed at how quickly he learned colors, alphabet, and numbers. He's such a quick quick learner.. I can't wait for the day that he has better communication skills because I really think he has above average intelligence.
Here's a quick video of the boys playing with trains. Tyler is starting to like trains too.. yeah, parallel play. In fact, if you listen, it's Tyler who has the giggles... a far cry from the boy spinning wheels in the corner, emotion and expressionless!
So we are gearing up to complete Tyler's first IEP (individualized education plan) for preschool. We are so lucky to be in such a supportive and knowledgeable school district as many parents often complain about how grueling this process can be. all the parents I've spoken too have had wonderful experiences with AAPS. This basically sets the stage for educators, therapists, and parents to agree upon what educational services are appropriate for Tyler and what goals we'd like him to achieve within in a certain time frame. Obviously our main concerns are Tyler's lack of vocal communication, his inability to hold/sit still, and his texture issues which I believe is what prevents him from eating independently.
You all are probably more knowledgeable about autism than the general population, many people think that everyone with autism is like rain main which isn't true, each person is very very different and only a small part of the autism population are considered "savants".. however I do always find it fascinating, those who are thought to have had autism such as Einstein and Newton. Here's a video of brief overview of the connection between Einstein and autism. http://livingwithautism.magnify.net/video/Einstein-The-Autism-Connectio What I like hearing in here is that Einstein didn't' speak til he was 4, OK, i don't "like' hearing that, however, people always says to us, "is he talking yet?"... I say no and they look disappointed, but I'm not. I mean yeah, I really want him to talk but he's come so far in terms of communication, it's just hard to explain that to people who do not fully understand all the steps of communication that must occur before talking can occur. Mind you, Tyler can understand A LOT of words and phrases. If I say, Tyler pick up your blanket, he will. In the car yesterday, I handed him back a piece of cookie and said, "Tyler, want cookie" and he looked when I said his name and cookie and grabbed it. Before he never would have even looked when I talked to him, I'd have to keep touching him until I got his attention and then find a way to get his attention to my hand so he could see the food cause he didn't understand food words, now he does. I'm also still amazed at how quickly he learned colors, alphabet, and numbers. He's such a quick quick learner.. I can't wait for the day that he has better communication skills because I really think he has above average intelligence.
Here's a quick video of the boys playing with trains. Tyler is starting to like trains too.. yeah, parallel play. In fact, if you listen, it's Tyler who has the giggles... a far cry from the boy spinning wheels in the corner, emotion and expressionless!
Thursday, November 20, 2008
11/20/08
Well after much consideration, we've decided to drop out of the ESI Study at U of M. It was a hard decision. The first 9 months was so incredibly life changing for us and we are so thankful for everything that the University of Michigan Autism and Communication Center has done for us, it was a very difficult decision to drop out prior to the end of the study which was scheduled for May. The reason we dropped out is because I didn't feel that Tyler was benefiting at all from this portion of the study, in fact, I felt like he was missing out on good time at school, etc. as a result of the study and it was causing later work hours and lots of frustration on my part. So after talking with the study coordinator and making sure that they can use the data they have on us so far, we decided to no longer participate in it. We wanted to make sure that Tyler's data shows that the first 9 months, he made incredible progress so we'd be willing to stay in the study if that was gonna be lost because we believe in all of it. I just really wanted him to be in school. He missed Tues - Fri of last week due to illness and school schedules. Then he went on Monday and cried again when we dropped him off but on Tuesday, he was supposed to go playgroup for he study which would then put him at school at 11:30, so only 2 hours of learning time and then I would have had to work until 9:30 and I was incredibly sick that day and when I woke at 5:30 I wondered how on earth I was gonna make it that long. So that's just an example of how it's been impacting us. Now if he was benefiting from it or if others were benefiting from our participation or if we were gonna lose all that data then again, we would have stuck it out, but I felt I really just wanted Tyler to be at school right now.
So that's the biggest news in our lives right now. still kind of in survival mode due tio colds and coughs.. the boy sstill have a lingering cough and Tyler can really get running around when he's excited so we spend time just trying to keep him relatively still and complaincent so he doesn't give himself coughing fits. We are going away this weekend adn Aunt Susie will be taking the boys for us so we are getting the necessary food, dishes, cleaning supplies around for that trip. we literally haul everything but the kitchen sink when Tyler stays away from the house!
So that's the biggest news in our lives right now. still kind of in survival mode due tio colds and coughs.. the boy sstill have a lingering cough and Tyler can really get running around when he's excited so we spend time just trying to keep him relatively still and complaincent so he doesn't give himself coughing fits. We are going away this weekend adn Aunt Susie will be taking the boys for us so we are getting the necessary food, dishes, cleaning supplies around for that trip. we literally haul everything but the kitchen sink when Tyler stays away from the house!
Tuesday, November 18, 2008
11/19/08
I read an article on USA Today with the following headline: A class of steroid drugs used in premature babies and in pregnant women at risk for a preterm delivery have been found to cause irreversible damage to brain cells in animal studies, USA Today reports. '
I'm not sure if you all are aware but I received steroid injections when the boys were 26 weeks gestation. The length of my cervix had shortened considerably and they were nervous about preterm delivery so we had two rounds of steroid shots to develop their lungs as quick as possible and then immediate bed rest for the rest of the pregnancy. I was a paranoid pregnant person.. I didn't eat any of the foods that people tell you not to eat like hot dogs, lunch meant, artificial sugar, caffeine. I for some reason developed a very strong distaste for vegetables when I was pregnant but I forced myself to eat them as well as drinking milk which isn't my favorite. I wouldn't even chew any gum that had artificial sugar in it so I was pretty adamant about being a very good pregnant mama, so it's actually surprising to me that I wasn't at all worried about the steroids and the side effects it may have. Maybe because I was so worried the boys would be born and not live that any side effects they could have had from the steroids would have been worth it, I just wanted them to have a chance at life. And I'm not saying it wasn't worth it even if it did cause Tyler to have autism, I mean the problems the boys would/could have had if they were born at 26 weeks would have been substantial, it's just strange that it never occurred to me to question the side effects.
Which brings me to my next point about mothers intuition. I've thought about writing this but I'm pretty sure I've never put it in the blog so if I have, I'm so sorry. When I was pregnant, I had a dream that Tyler wasn't doing well. We knew how the boys were by their position in my belly. So we always knew Tyler was at the top. Anyway, I had a dream he wasn't thriving so in my dream they did a quick surgery to take him out (Ben stayed tucked away and cozy) so that Tyler could lay on my chest and I could him as they say that closeness between a mother and baby really helps to heal/improve health for the babies. Anyway, even before Tyler was born, I was worried about him. We also had a point right before we were put on bed rest where his growth rate had slowed a bit compared to Ben's, in fact we were worried that he was gonna be quite small when he was born and were pleasently surprised that he was over 5lbs! Also, we didnt' know it at the time but during delivery it was discovered that the cord had been wrapped around Tyler's neck and if we had went through with a natural birth we would have likely ran into a lot of problems during birth but who knows how restricted he was while he was still developing, I now wonder, was this the reason he stopped growing as quickly as Ben and then how did the shots effect his brain. Maybe the combination was just enough to cause him to be at risk for autism and then when you add in weaker immune systems, gut issues, environmental triggers such as vaccinatinos (he got one before he even left the hospital when eh was barely 5 lbs!!!) I just think no wonder.. that poor guy just didnt' stand a chance. I hope that someday all this ideas of mine aren't just ideas but they are facts on paper so everyone knows every single risk factor and maybe when too many risk factors are combined, parents can make informed decisions to get rid of some of the risks such as early vaccinations.
In my previous blog I did share a story about another mother and it's funny cause towards the end she talks about how she felt guilty about the other child she felt like she was leaving out. I just want to say that we make a very concentrated effort to not have this happen in our house. There are occasions, especially on longer public outtings where everyone will haev a much better time if I'm the one assigned to Tyler so to speak. But on weekends when we have shorter trips or other plans, we make sure that mom gets to spend with Ben. Although we were all sick this weekend, Ben went with mom to the grocery store while Tyler and Grandma took a smaller grocery trip to Whole Foods. Ben had a wonderful time as we spent about 30 mins in the toy section and he ended up getting a new train! Then he helped me shop. After shopping I took Ben out to eat at Arby's, he's never been there before and then we went home. On Sunday, I took Ben to see "Gadagascar 2" Ben's version of madagascar. It was his first trip to the movies. I had looked forward to it and contemplated not taking him since the earliest movie started very close to nap time and he was already a bit whiny from being ill but he did great! We made it through almost 90 mins of the movie. He really enjoyed his kid snack pack with popcorn and gummi bears. They didn't have juice (note to self bring juice box next time) so I got him a sprite, first time he's had carbonation and he did not lik eit. I felt so guilty cause not only was he eating popcorn but he had a bad cough. Anyway, he had a great time and I'm so happy we went. I think eh's just barely big enough to hold down teh seat. They still are both under 30 lbs. in fact Tyler got weightr hte other day and he wasn't quite 27 lbs yet. Skinny little dudes! So anyway, we really do all that we can to try to make sure Ben feels loved and gets quality mommy time. I'm sure every family struggles to give their children teh appropriate attention but with our unique situation, it's extra difficult. I'm sure we aren't far off from Ben being able to understand what's going on with Tyler and he'll be such a great helper. In fact, today he wanted to go help me wake up Tyler so we could get ready for school and he was saying "tickle tickle" as he reached in Tyler's cribs to give him tickles to wake him up. Ben is very very loving and all though he loves attention and will steal it any time he can, I know he's gonna be so nourchuring to Tyler.
I'm not sure if you all are aware but I received steroid injections when the boys were 26 weeks gestation. The length of my cervix had shortened considerably and they were nervous about preterm delivery so we had two rounds of steroid shots to develop their lungs as quick as possible and then immediate bed rest for the rest of the pregnancy. I was a paranoid pregnant person.. I didn't eat any of the foods that people tell you not to eat like hot dogs, lunch meant, artificial sugar, caffeine. I for some reason developed a very strong distaste for vegetables when I was pregnant but I forced myself to eat them as well as drinking milk which isn't my favorite. I wouldn't even chew any gum that had artificial sugar in it so I was pretty adamant about being a very good pregnant mama, so it's actually surprising to me that I wasn't at all worried about the steroids and the side effects it may have. Maybe because I was so worried the boys would be born and not live that any side effects they could have had from the steroids would have been worth it, I just wanted them to have a chance at life. And I'm not saying it wasn't worth it even if it did cause Tyler to have autism, I mean the problems the boys would/could have had if they were born at 26 weeks would have been substantial, it's just strange that it never occurred to me to question the side effects.
Which brings me to my next point about mothers intuition. I've thought about writing this but I'm pretty sure I've never put it in the blog so if I have, I'm so sorry. When I was pregnant, I had a dream that Tyler wasn't doing well. We knew how the boys were by their position in my belly. So we always knew Tyler was at the top. Anyway, I had a dream he wasn't thriving so in my dream they did a quick surgery to take him out (Ben stayed tucked away and cozy) so that Tyler could lay on my chest and I could him as they say that closeness between a mother and baby really helps to heal/improve health for the babies. Anyway, even before Tyler was born, I was worried about him. We also had a point right before we were put on bed rest where his growth rate had slowed a bit compared to Ben's, in fact we were worried that he was gonna be quite small when he was born and were pleasently surprised that he was over 5lbs! Also, we didnt' know it at the time but during delivery it was discovered that the cord had been wrapped around Tyler's neck and if we had went through with a natural birth we would have likely ran into a lot of problems during birth but who knows how restricted he was while he was still developing, I now wonder, was this the reason he stopped growing as quickly as Ben and then how did the shots effect his brain. Maybe the combination was just enough to cause him to be at risk for autism and then when you add in weaker immune systems, gut issues, environmental triggers such as vaccinatinos (he got one before he even left the hospital when eh was barely 5 lbs!!!) I just think no wonder.. that poor guy just didnt' stand a chance. I hope that someday all this ideas of mine aren't just ideas but they are facts on paper so everyone knows every single risk factor and maybe when too many risk factors are combined, parents can make informed decisions to get rid of some of the risks such as early vaccinations.
In my previous blog I did share a story about another mother and it's funny cause towards the end she talks about how she felt guilty about the other child she felt like she was leaving out. I just want to say that we make a very concentrated effort to not have this happen in our house. There are occasions, especially on longer public outtings where everyone will haev a much better time if I'm the one assigned to Tyler so to speak. But on weekends when we have shorter trips or other plans, we make sure that mom gets to spend with Ben. Although we were all sick this weekend, Ben went with mom to the grocery store while Tyler and Grandma took a smaller grocery trip to Whole Foods. Ben had a wonderful time as we spent about 30 mins in the toy section and he ended up getting a new train! Then he helped me shop. After shopping I took Ben out to eat at Arby's, he's never been there before and then we went home. On Sunday, I took Ben to see "Gadagascar 2" Ben's version of madagascar. It was his first trip to the movies. I had looked forward to it and contemplated not taking him since the earliest movie started very close to nap time and he was already a bit whiny from being ill but he did great! We made it through almost 90 mins of the movie. He really enjoyed his kid snack pack with popcorn and gummi bears. They didn't have juice (note to self bring juice box next time) so I got him a sprite, first time he's had carbonation and he did not lik eit. I felt so guilty cause not only was he eating popcorn but he had a bad cough. Anyway, he had a great time and I'm so happy we went. I think eh's just barely big enough to hold down teh seat. They still are both under 30 lbs. in fact Tyler got weightr hte other day and he wasn't quite 27 lbs yet. Skinny little dudes! So anyway, we really do all that we can to try to make sure Ben feels loved and gets quality mommy time. I'm sure every family struggles to give their children teh appropriate attention but with our unique situation, it's extra difficult. I'm sure we aren't far off from Ben being able to understand what's going on with Tyler and he'll be such a great helper. In fact, today he wanted to go help me wake up Tyler so we could get ready for school and he was saying "tickle tickle" as he reached in Tyler's cribs to give him tickles to wake him up. Ben is very very loving and all though he loves attention and will steal it any time he can, I know he's gonna be so nourchuring to Tyler.
11/18/08
Sorry there's been a delay, everyone's been sick, even the dog, so we haven't been moving forward on much lately. In fact, yesterday was Tyler's first day back at school since I picked him up sick last Tuesday! I did briefly speak to the OT today who said he's doing wonderful. We are working on a sensory profile for him so they can better plan therapy based upon his sensory needs.
The reason I'm writing today is to actually share someone else's blog. I love reading stories about people's children who are in recovery, it just helps keep me strong. This one also shares the medical side of recovery and it's good to know that they are looking at the brains of children who have recovered.
Paging through 176 MRI scans of my 9-year-old’s brain on my home computer, I discovered a button that let me play them as a movie. Gray swirls burst onto the screen, dissolving into one another and revealing a new set of patterns. Beams of light faded in and out, some curving and traveling around the different regions of his brain. I saw the squiggly folds of his cerebral cortex, the gray matter that is the center of human intelligence.
These scans, the most intimate pictures I had ever seen of my son, Leo, may help researchers understand what’s going on in his head — and relieve him of a diagnosis that I have devoted several years to helping him overcome.
Leo, identified as No. C1059, underwent the scans as part of a research study at the Olin Neuropsychiatry Research Center at Hartford Hospital in Connecticut. He was thrilled to earn $200 for taking part. I smiled along with him, because I could remember the days when he had a limited range of emotions, and pride was not one of them.
The study is examining 35 children, ranging in age from 8 to 17, who once had an autism-spectrum diagnosis but no longer do. Leo was invited to participate based on how I had described changes in his behavior and communication skills since he was given an autism diagnosis seven years ago. It is one of several studies underway to clarify the experiences of a growing number of children who are apparently emerging from autism and its related disorders to function almost indistinguishably from their peers; it aims to reveal whether it is indeed possible to recover from autism.
According to many experts, recovery from an autism spectrum disorder — a pervasive impairment in thinking, feeling, language development and the ability to relate to others that affects one child out of every 150 in the United States — is real. But the meaning of recovery differs from researcher to researcher as much as it does from parent to parent.
I know what recovery means for me: to have a conversation with Leo, especially about love and friendship, and to see him play a team sport. When Leo asked to join his school’s soccer team this fall, I thought back to the distressing days when he ran aimlessly around the back yard, clueless about the purpose of the two goals I had set up.
The idea that a child can recover from an autism spectrum disorder is controversial. Skeptics argue that recovery is impossible from a disorder they view as lifelong: more like being born with clubfoot than twisting your ankle. And if the condition is “cured,” they say, then it can’t have been autism to begin with. No one knows how many children have lost their diagnosis since there are no nationwide statistics accepted by the medical establishment.
“If I absolutely had to guess, I would think that the percent that are capable of recovery might be in the neighborhood of 20 percent,” said Deborah Fein, a professor of psychology at the University of Connecticut and lead researcher of the study my son participated in.
Some experts don’t like to talk about recovery, because it implies no detectable difficulties. “Sometimes parents want me to say their child is normal,” after improving so that they no longer meet the specific criteria for a diagnosis of autism, said Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and one of the world’s leading autism experts. “If by that you mean no detectable social troubles or oddities, that is uncommon,” he said. “It happens, but usually there are some problems that persist, even if they are minor.”
Those problems, Fein said, include other learning disabilities and psychiatric conditions, most often attention-deficit hyperactivity disorder. Social phobias may also persist. A child with a social phobia is capable of making friends but avoids big parties and being the center of attention.A Catch-All Diagnosis
My son was 2 years old when a behavioral evaluation labeled him autistic. The report said:
“Neurological examination revealed a self-directed, language-delayed boy who had pacing behavior.
“Imaginative play was infrequently seen . . . . The results for Leo using the CARS [Childhood Autism Rating Scale] were consistent with a diagnosis of autism.”
Leo had the three cardinal traits of autism: poor social interaction, lack of verbal and nonverbal communication, and funny mannerisms, more clinically described as odd and repetitive behavior and fixed interests. Three months later, he received a diagnosis from the Yale Child Study Center of PDD-NOS, or “pervasive developmental disorder — not otherwise specified.” It’s a catch-all diagnosis on the autism spectrum for people who are less likely than others to have intellectual impairment.
Words popped out of Leo’s mouth every now and then, and he repeated phrases from “Thomas the Tank Engine” videos without any context. It was a challenge for him to express a basic need, such as “more juice.” He ignored group activities and never broke out in a big smile to share an accomplishment. Under stress, he traced the floral design on our rug or paced as if he were trying to figure something out. At the beach, he pitched his forehead into the sand, scooping up wet handfuls to dribble them on either side of his temples. In the grocery store, he’d burst out crying for no apparent reason.Spooked Into Action
Leo’s diagnosis also had a profound impact on me. It spooked me into action.
The science of early human development tells us that the brain has breathtaking plasticity during the first three years of life. I was in a race against time to set him on a developmental path that would lead to independent living. The urgency to help him was almost primal.
I abandoned my writing career to manage an early intervention program that Yale and Leo’s special education teachers recommended. At its height, Leo’s program consisted of up to 35 hours a week of seven different therapies, and I was always on the lookout for anything else that might help him.
We settled on those with the most scientifically proven strengths. They included an approach to behavior modification that didn’t include repetitive instruction, a form of play therapy, social skills groups, occupational therapy and speech therapy. We tried but stopped several alternative therapies: music therapy and auditory integration therapy, which supposedly re-teaches the ear to listen, and neurofeedback, which supposedly retrains the brain to focus more.
It was an incredible juggling act as I struggled to prioritize treatments that experts recommended. I also fretted about ignoring Leo’s older brother while engaging in battles with the D.C. school system and my health insurer over payment for his special education and therapies and monitoring his progress to adjust the program as he progressed. I led this life for four years, while my husband paid the family bills.
Seven years after the initial diagnosis, Leo has achieved significant gains in areas thought to be unattainable by even high-functioning children with autism spectrum disorders.
He attends a regular school and is socially engaged, articulate, creative and performing at grade level with a tutor for reading and handwriting. He understands and can express complex and abstract thoughts. He can empathize. And he has friends he cares about and who care about him.
I won’t say that all the traits that led to Leo’s diagnosis have disappeared. But the ones that remain are not unique to children with autism spectrum disorders.
For all his achievements, he is a spirited little boy with hair-trigger emotions that can overtake him when he cannot bend the world to his will. His behavior is sometimes compulsive. In Freudian terms, he is all id.
As for me, I became the socially isolated person I worked so hard to keep Leo from becoming. My social network disintegrated in the years that I immersed myself in Leo’s recovery.The Jury Is Still Out
Fein and her team in Hartford will either validate my belief that Leo has moved off the autism spectrum or tell me he is still on it. We’re waiting to hear.
Their testing over two days was comprehensive. An examiner evaluated Leo’s IQ, language and social skills, and his behavior and interests. She asked him questions such as “What is footwear?” and “What does ‘find fault’ mean?” Leo said, footwear “is something you put on your feet to keep them from getting dirty.” He said “find fault” is a “way of saying that you are not the person who, for example, broke your mom’s favorite vase.”
To test his reasoning skills, he had to solve mathematical games such as the Tower of Hanoi puzzle, moving a stack of disks from one rod to another without putting a larger disk on top of a smaller one.
The brain scans that I found so mesmerizing were intended to give researchers more understanding about how his brain behaves by showing which regions lighted up when he responded to certain statements. Some were designed to evoke a visual image (”The letter ‘J’ looks like an umbrella handle”); others either stated, or misstated, facts (”Elephants can breathe underwater”).
I answered hours of questions focused on Leo’s ability to make and keep friends. I said Leo had friends, even a best friend, and asked for play dates without prodding from me. That’s key: While many children with autism spectrum disorders have friends, according to Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, they don’t seek out peer relationships. “Having an aunt or a music teacher as a friend doesn’t count,” she said.
Hope for Parents
Researchers today credit earlier diagnosis and treatment for creating more positive outcomes like my son’s, but early intervention isn’t the whole story.
In 1980, when autism was added to the Diagnostic and Statistical Manual of Mental Health Disorders (DSM), the bible for psychiatric disorders, the diagnosis focused on mental retardation. Studies showed that up to two-thirds required residential care or hospitalization in adulthood. About 2 percent achieved moderate to high levels of independence and had some friends but worked menial jobs in factories and office buildings.
In 1994, the fourth revision of the DSM broadened the criteria for autism to include individuals who were more cognitively able. Since then, not surprisingly, studies have shown rosier outcomes for more children.
In 2007, Wendy Stone, a professor of pediatrics and psychology at Vanderbilt University, compared her own study of a group of children age 2 to 4 who had been given an autism diagnosis with the results of similar studies. Children received various types and amounts of intervention. But the number of therapy hours they received did not predict their outcome. What did? Age at diagnosis, symptom severity and cognitive skills.
“I don’t know that the children ‘recovered,’ though they did improve . . . to the extent that they no longer met the diagnostic criteria,” Stone said. “Almost all continued to have some form of developmental disorder.”
“I think the most hopeful message we need to give parents,” said Geraldine Dawson, chief science officer of the nonprofit group Autism Speaks, “is that all children with autism are capable of learning and developing new skills with the help of early intervention.”
And that’s just what my now affectionate and fun-loving son, Leo, has done, whatever the results of the Hartford testing ultimately show.
The reason I'm writing today is to actually share someone else's blog. I love reading stories about people's children who are in recovery, it just helps keep me strong. This one also shares the medical side of recovery and it's good to know that they are looking at the brains of children who have recovered.
Paging through 176 MRI scans of my 9-year-old’s brain on my home computer, I discovered a button that let me play them as a movie. Gray swirls burst onto the screen, dissolving into one another and revealing a new set of patterns. Beams of light faded in and out, some curving and traveling around the different regions of his brain. I saw the squiggly folds of his cerebral cortex, the gray matter that is the center of human intelligence.
These scans, the most intimate pictures I had ever seen of my son, Leo, may help researchers understand what’s going on in his head — and relieve him of a diagnosis that I have devoted several years to helping him overcome.
Leo, identified as No. C1059, underwent the scans as part of a research study at the Olin Neuropsychiatry Research Center at Hartford Hospital in Connecticut. He was thrilled to earn $200 for taking part. I smiled along with him, because I could remember the days when he had a limited range of emotions, and pride was not one of them.
The study is examining 35 children, ranging in age from 8 to 17, who once had an autism-spectrum diagnosis but no longer do. Leo was invited to participate based on how I had described changes in his behavior and communication skills since he was given an autism diagnosis seven years ago. It is one of several studies underway to clarify the experiences of a growing number of children who are apparently emerging from autism and its related disorders to function almost indistinguishably from their peers; it aims to reveal whether it is indeed possible to recover from autism.
According to many experts, recovery from an autism spectrum disorder — a pervasive impairment in thinking, feeling, language development and the ability to relate to others that affects one child out of every 150 in the United States — is real. But the meaning of recovery differs from researcher to researcher as much as it does from parent to parent.
I know what recovery means for me: to have a conversation with Leo, especially about love and friendship, and to see him play a team sport. When Leo asked to join his school’s soccer team this fall, I thought back to the distressing days when he ran aimlessly around the back yard, clueless about the purpose of the two goals I had set up.
The idea that a child can recover from an autism spectrum disorder is controversial. Skeptics argue that recovery is impossible from a disorder they view as lifelong: more like being born with clubfoot than twisting your ankle. And if the condition is “cured,” they say, then it can’t have been autism to begin with. No one knows how many children have lost their diagnosis since there are no nationwide statistics accepted by the medical establishment.
“If I absolutely had to guess, I would think that the percent that are capable of recovery might be in the neighborhood of 20 percent,” said Deborah Fein, a professor of psychology at the University of Connecticut and lead researcher of the study my son participated in.
Some experts don’t like to talk about recovery, because it implies no detectable difficulties. “Sometimes parents want me to say their child is normal,” after improving so that they no longer meet the specific criteria for a diagnosis of autism, said Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and one of the world’s leading autism experts. “If by that you mean no detectable social troubles or oddities, that is uncommon,” he said. “It happens, but usually there are some problems that persist, even if they are minor.”
Those problems, Fein said, include other learning disabilities and psychiatric conditions, most often attention-deficit hyperactivity disorder. Social phobias may also persist. A child with a social phobia is capable of making friends but avoids big parties and being the center of attention.A Catch-All Diagnosis
My son was 2 years old when a behavioral evaluation labeled him autistic. The report said:
“Neurological examination revealed a self-directed, language-delayed boy who had pacing behavior.
“Imaginative play was infrequently seen . . . . The results for Leo using the CARS [Childhood Autism Rating Scale] were consistent with a diagnosis of autism.”
Leo had the three cardinal traits of autism: poor social interaction, lack of verbal and nonverbal communication, and funny mannerisms, more clinically described as odd and repetitive behavior and fixed interests. Three months later, he received a diagnosis from the Yale Child Study Center of PDD-NOS, or “pervasive developmental disorder — not otherwise specified.” It’s a catch-all diagnosis on the autism spectrum for people who are less likely than others to have intellectual impairment.
Words popped out of Leo’s mouth every now and then, and he repeated phrases from “Thomas the Tank Engine” videos without any context. It was a challenge for him to express a basic need, such as “more juice.” He ignored group activities and never broke out in a big smile to share an accomplishment. Under stress, he traced the floral design on our rug or paced as if he were trying to figure something out. At the beach, he pitched his forehead into the sand, scooping up wet handfuls to dribble them on either side of his temples. In the grocery store, he’d burst out crying for no apparent reason.Spooked Into Action
Leo’s diagnosis also had a profound impact on me. It spooked me into action.
The science of early human development tells us that the brain has breathtaking plasticity during the first three years of life. I was in a race against time to set him on a developmental path that would lead to independent living. The urgency to help him was almost primal.
I abandoned my writing career to manage an early intervention program that Yale and Leo’s special education teachers recommended. At its height, Leo’s program consisted of up to 35 hours a week of seven different therapies, and I was always on the lookout for anything else that might help him.
We settled on those with the most scientifically proven strengths. They included an approach to behavior modification that didn’t include repetitive instruction, a form of play therapy, social skills groups, occupational therapy and speech therapy. We tried but stopped several alternative therapies: music therapy and auditory integration therapy, which supposedly re-teaches the ear to listen, and neurofeedback, which supposedly retrains the brain to focus more.
It was an incredible juggling act as I struggled to prioritize treatments that experts recommended. I also fretted about ignoring Leo’s older brother while engaging in battles with the D.C. school system and my health insurer over payment for his special education and therapies and monitoring his progress to adjust the program as he progressed. I led this life for four years, while my husband paid the family bills.
Seven years after the initial diagnosis, Leo has achieved significant gains in areas thought to be unattainable by even high-functioning children with autism spectrum disorders.
He attends a regular school and is socially engaged, articulate, creative and performing at grade level with a tutor for reading and handwriting. He understands and can express complex and abstract thoughts. He can empathize. And he has friends he cares about and who care about him.
I won’t say that all the traits that led to Leo’s diagnosis have disappeared. But the ones that remain are not unique to children with autism spectrum disorders.
For all his achievements, he is a spirited little boy with hair-trigger emotions that can overtake him when he cannot bend the world to his will. His behavior is sometimes compulsive. In Freudian terms, he is all id.
As for me, I became the socially isolated person I worked so hard to keep Leo from becoming. My social network disintegrated in the years that I immersed myself in Leo’s recovery.The Jury Is Still Out
Fein and her team in Hartford will either validate my belief that Leo has moved off the autism spectrum or tell me he is still on it. We’re waiting to hear.
Their testing over two days was comprehensive. An examiner evaluated Leo’s IQ, language and social skills, and his behavior and interests. She asked him questions such as “What is footwear?” and “What does ‘find fault’ mean?” Leo said, footwear “is something you put on your feet to keep them from getting dirty.” He said “find fault” is a “way of saying that you are not the person who, for example, broke your mom’s favorite vase.”
To test his reasoning skills, he had to solve mathematical games such as the Tower of Hanoi puzzle, moving a stack of disks from one rod to another without putting a larger disk on top of a smaller one.
The brain scans that I found so mesmerizing were intended to give researchers more understanding about how his brain behaves by showing which regions lighted up when he responded to certain statements. Some were designed to evoke a visual image (”The letter ‘J’ looks like an umbrella handle”); others either stated, or misstated, facts (”Elephants can breathe underwater”).
I answered hours of questions focused on Leo’s ability to make and keep friends. I said Leo had friends, even a best friend, and asked for play dates without prodding from me. That’s key: While many children with autism spectrum disorders have friends, according to Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, they don’t seek out peer relationships. “Having an aunt or a music teacher as a friend doesn’t count,” she said.
Hope for Parents
Researchers today credit earlier diagnosis and treatment for creating more positive outcomes like my son’s, but early intervention isn’t the whole story.
In 1980, when autism was added to the Diagnostic and Statistical Manual of Mental Health Disorders (DSM), the bible for psychiatric disorders, the diagnosis focused on mental retardation. Studies showed that up to two-thirds required residential care or hospitalization in adulthood. About 2 percent achieved moderate to high levels of independence and had some friends but worked menial jobs in factories and office buildings.
In 1994, the fourth revision of the DSM broadened the criteria for autism to include individuals who were more cognitively able. Since then, not surprisingly, studies have shown rosier outcomes for more children.
In 2007, Wendy Stone, a professor of pediatrics and psychology at Vanderbilt University, compared her own study of a group of children age 2 to 4 who had been given an autism diagnosis with the results of similar studies. Children received various types and amounts of intervention. But the number of therapy hours they received did not predict their outcome. What did? Age at diagnosis, symptom severity and cognitive skills.
“I don’t know that the children ‘recovered,’ though they did improve . . . to the extent that they no longer met the diagnostic criteria,” Stone said. “Almost all continued to have some form of developmental disorder.”
“I think the most hopeful message we need to give parents,” said Geraldine Dawson, chief science officer of the nonprofit group Autism Speaks, “is that all children with autism are capable of learning and developing new skills with the help of early intervention.”
And that’s just what my now affectionate and fun-loving son, Leo, has done, whatever the results of the Hartford testing ultimately show.
Tuesday, November 11, 2008
11/11/08 ugh...winter
I knew I was forgetting some exciting things in the last blog. The first is that Tyler is beginning to use his fork all on his own. We used to stab the food for him and hand it to him or sit it down for him to grab, now he's grabbing the fork on his own and attempting to spear his own food. He also is grabbing finger food off his plate to eat, there was a time he would avoid at all costs, touching any of his food. We can finally put a dish of something or a bag of something in his hands or lap whiel in the car and he will eat out of it. Used to be we'd have to reach back in teh car and tab his leg to get his attention and hand him a piece at a time. We are super super excited about these new schools. Once Tyler is eating well on his own, we can give Ben more attention during dinner as Ben occasionally acts out seeing how much attention Tyler gets.
So this morning was supposed to be the start of a great day. Holiday for me so Ben was going to daycare and Tler had preschool. I was gonna get in a long run, clean the house, finish up laundry and have a few minutes of peace today before heading off to the parent eductation class tonight for the study. I dropped Ben off at daycare and then once we pulled into the preschool parking lot Tyler started crying. I figured he just was acting like he usually does with me and he didn't want me to leave. So we went in and changed his diaper in the bathroom (still tears), we caught the teacher on the way out so she helped us to class, I said goodbye and left him crying know that they always say he's fine as soon as I'm gone. I had just gotten back home and the teacher called saying that Tyler had been crying a lot so they took his temp and it was over 101. Okie dokie.. on my way back to get him. Dad picked him up and I met them to do the exchange. I gave him some motrin and juice and we headed back home. About 3 mintues later Tyler started gagging and then vomited. So we pulled into someones driveway, got him cleaned up and headed for home. Tyler tends to have a weak stomach when he has a fever so I gave himt ylenol when we got home and waited a bit on any fluids. The dog seems to have a keen sense when the kids are sick and joins in the fun (always on mom duty!!!) he vomited all over the carpet, lovely. Tyler seems run down a bit and a bit more cuddly than normal but overall doing ok and fever is around 100 and he's with dad now. Got a call from daycare (forgot to tell her we whouldn't be bringing Tyler by after school... oooppsss) and found out Ben is also not feeling well but no fever yet.
Let the winter season begin.... I despise winter as its aways one illness after another at our house and we are always in survival mode rather than progressing. We had big plans this weekend.. heard of a cool portrait studio that works well with kids with autism and since we've only had the kids pictures taken once and itw as horrible, we were gonna try to get that done this weekend (in time for the holidays). I also wanted to take Ben to see Madagascar 2 cause he loves that book and then since Grandma is gonna be here we were gonna take the boys to java jungle so she could watch them play, it's so fun there. Hopefully everyone is feeling better by the weekend. Tyler has his monthly assessment for the study on Friday and a well visit at the peditricans which he needed for his 30day placement at school which is next week so like always, thi sisn't the best week to get sick. We also had a scheduled parent video today which luckily I had already rescheduled to next week. We are suppsoed to meet with the DAN doctor on Monday but in order to do that we have to start the antifungal medication which we can't do with Tyler being sick. So I'm not sure how that's all gonna work, I'll leave that one up to dad since he handles those appts.
Anyway, hopefully this is just a minor bug and we can' t get back to moving forward with school, doctors, supplements, etc. can't believe it's almost mid-November!
Love to all
So this morning was supposed to be the start of a great day. Holiday for me so Ben was going to daycare and Tler had preschool. I was gonna get in a long run, clean the house, finish up laundry and have a few minutes of peace today before heading off to the parent eductation class tonight for the study. I dropped Ben off at daycare and then once we pulled into the preschool parking lot Tyler started crying. I figured he just was acting like he usually does with me and he didn't want me to leave. So we went in and changed his diaper in the bathroom (still tears), we caught the teacher on the way out so she helped us to class, I said goodbye and left him crying know that they always say he's fine as soon as I'm gone. I had just gotten back home and the teacher called saying that Tyler had been crying a lot so they took his temp and it was over 101. Okie dokie.. on my way back to get him. Dad picked him up and I met them to do the exchange. I gave him some motrin and juice and we headed back home. About 3 mintues later Tyler started gagging and then vomited. So we pulled into someones driveway, got him cleaned up and headed for home. Tyler tends to have a weak stomach when he has a fever so I gave himt ylenol when we got home and waited a bit on any fluids. The dog seems to have a keen sense when the kids are sick and joins in the fun (always on mom duty!!!) he vomited all over the carpet, lovely. Tyler seems run down a bit and a bit more cuddly than normal but overall doing ok and fever is around 100 and he's with dad now. Got a call from daycare (forgot to tell her we whouldn't be bringing Tyler by after school... oooppsss) and found out Ben is also not feeling well but no fever yet.
Let the winter season begin.... I despise winter as its aways one illness after another at our house and we are always in survival mode rather than progressing. We had big plans this weekend.. heard of a cool portrait studio that works well with kids with autism and since we've only had the kids pictures taken once and itw as horrible, we were gonna try to get that done this weekend (in time for the holidays). I also wanted to take Ben to see Madagascar 2 cause he loves that book and then since Grandma is gonna be here we were gonna take the boys to java jungle so she could watch them play, it's so fun there. Hopefully everyone is feeling better by the weekend. Tyler has his monthly assessment for the study on Friday and a well visit at the peditricans which he needed for his 30day placement at school which is next week so like always, thi sisn't the best week to get sick. We also had a scheduled parent video today which luckily I had already rescheduled to next week. We are suppsoed to meet with the DAN doctor on Monday but in order to do that we have to start the antifungal medication which we can't do with Tyler being sick. So I'm not sure how that's all gonna work, I'll leave that one up to dad since he handles those appts.
Anyway, hopefully this is just a minor bug and we can' t get back to moving forward with school, doctors, supplements, etc. can't believe it's almost mid-November!
Love to all
Monday, November 10, 2008
11/10/08
Since Ben was away this weekend, Steve and I were able to spend a lot of time working with Tyler. It's the first time that he and I have both been alone with Tyler, so we really took advantage of the time which allowed me to really show Steve how to interact with Tyler on many levels and how to help support him through transitions and changes.
Tyler was very chatty this weekend. We got him to approximate bye bye and wave to daycare as we were leaving on Friday. He also said bye bye no two different occasions on Saturday as well as "bubb" for bubbles. YEAH! He was really into his B's and P's this weekend so we tried to take advantage of that by playing with items or objects that started with B's and P's. I had bought the boys slinky's on Friday and so we tried to play with Tyler with them on Friday night. Luckily one of the slinky's I bought the boys recently was purple so it went right along with Tyler's "P" sound! Tyler really enjoyed the slinky's. In fact, it only took two times of me pushing the slinky down the stairs for Tyler to catch on to what he was supposed to do and immitate me. We were impressed with how long he was interseted in the slinky's becuase they don't really have an exciting cause and effect reactino like lights or music or sounds or anything, just our reaction and he did great.
Tyler also did very well with signing this weekend. Tyler and I play row row your boat in the bathtub where he acts like the boat and I slide him back and forth. I started singing row your boat with the "polar bear" option since we are trying to work on the bear sign and he then signed for lion so I changed the song per his request to sing the lion version instead, I was very excited! Also during bathtime, I sang wheels on the bus and when it was time for the doors to go open and shut (which I sign on for him) he signed open all on his own without prompting, pauses, or anything :) We used to use the "on" sound for him to requeset to turn the water on in the tub, now we are taking it a bit further and having him sign water while he makes the on sound so it's more of a water on request. He seems to be doing this very well with a bit of help, no resistance though which is great.
Dad and Tyler really enjoyed the jungle java. I stayed home to clean the house so I didn't get to see everything but Steve said there were at least 25 kids in there and Tyler didn't get overstimulated or anything and was really having a great time. We also found out the hotdogs they carry, Tyler can eat, yeah! So we are thinkign seriously that this may be a good place for the boys to have their next birthday party.
We expanded Tyler's diet to include mustard and he seemed to really like it. We are trying to cut out the ketchup due to the sugar in ketchup and he can have some types of mustard so we thought that would be a good alternative. We are also looking for new things for him to try so we can build upon his limited preferred food items
Tyler was very chatty this weekend. We got him to approximate bye bye and wave to daycare as we were leaving on Friday. He also said bye bye no two different occasions on Saturday as well as "bubb" for bubbles. YEAH! He was really into his B's and P's this weekend so we tried to take advantage of that by playing with items or objects that started with B's and P's. I had bought the boys slinky's on Friday and so we tried to play with Tyler with them on Friday night. Luckily one of the slinky's I bought the boys recently was purple so it went right along with Tyler's "P" sound! Tyler really enjoyed the slinky's. In fact, it only took two times of me pushing the slinky down the stairs for Tyler to catch on to what he was supposed to do and immitate me. We were impressed with how long he was interseted in the slinky's becuase they don't really have an exciting cause and effect reactino like lights or music or sounds or anything, just our reaction and he did great.
Tyler also did very well with signing this weekend. Tyler and I play row row your boat in the bathtub where he acts like the boat and I slide him back and forth. I started singing row your boat with the "polar bear" option since we are trying to work on the bear sign and he then signed for lion so I changed the song per his request to sing the lion version instead, I was very excited! Also during bathtime, I sang wheels on the bus and when it was time for the doors to go open and shut (which I sign on for him) he signed open all on his own without prompting, pauses, or anything :) We used to use the "on" sound for him to requeset to turn the water on in the tub, now we are taking it a bit further and having him sign water while he makes the on sound so it's more of a water on request. He seems to be doing this very well with a bit of help, no resistance though which is great.
Dad and Tyler really enjoyed the jungle java. I stayed home to clean the house so I didn't get to see everything but Steve said there were at least 25 kids in there and Tyler didn't get overstimulated or anything and was really having a great time. We also found out the hotdogs they carry, Tyler can eat, yeah! So we are thinkign seriously that this may be a good place for the boys to have their next birthday party.
We expanded Tyler's diet to include mustard and he seemed to really like it. We are trying to cut out the ketchup due to the sugar in ketchup and he can have some types of mustard so we thought that would be a good alternative. We are also looking for new things for him to try so we can build upon his limited preferred food items
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