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.... :)

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!

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!

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.

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.

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

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

11/6/08

I'm feeling particularly negative today so I apologize if I seem overly critical or judgemental of other people in this blog, but I just have to get a few things off my chest so here goes.

The past 5 days or so have been particularly hard in our household for many reasons. One of them is because we focused on doing a lot of fun things for Ben last weekend so it was just kinda my job to help Tyler get through it all so my time wasn't necessarily spent enjoying the "family" side of it all but more helping Tyler in situations out of the norm which is really exhausting both physically and emotionally. Another part of the reason it's tough is that Ben is acting out a bit at home and at daycare, I'm convinced it's likely him vying for attention and we are doing things to help, ie. had a Ben morning today (will explain later in blog) but still it makes situations very difficult, almost comical sometimes if you look back at it all. Sometimes i wish our life was videotaped, so it could capture the insanity of it at all times.

I took the morning off to spend it with Ben. It was my morning to drop Tyler at school and then I figured Ben and I could go do fun things together so he could get some one on one mom time. I was really looking forward to it. We went to Starbucks where he had his first hot chocolate (and didn't like it) and a cookie. Then we went to the bookstore and he got a dinosaur book(his new favorite thing is dinosaurs) and a Thomas book. Then we went to a new indoor play center I had heard about. It was really really cool, in fact we are hoping to take Tyler there this weekend. Anyway, there were a group of mom's there talking while their kids played. I was kind of walking around watching Ben, he was having a ball. At one point, Ben wanted to go into the Toddler area where the other moms and kids were hanging out now. It was impossible not to overhear their conversation, but I found myself thinking "give me a break" to most of their discussions. At that moment, I had wished I had a 24 hour highlight video to show them of our life. Not that I want every one's life to be tough, i don't, I'm certain that some of my negative attitude was jealousy at the ease of normal problems vs. what we face. One of the conversations was about breastfeeding and how the baby was a big eater and it took 40 mins and she didn't have the time to do that so she stopped. I remembered back to breastfeeding the boys and how it was a full hour if not more by the time we got the breast/bottle/pump cycle completed and there were two babies. I was also significantly annoyed with the fact that their kids were walking around eating and leaving crumbs everywhere in the play area and was causing me to wonder whether or not bringing Tyler would be a great idea. I know this will happen all of Tyler's life but we work SO hard to keep him to his diet and I had already checked with the manager about their food supply and if there was anything Tyler could eat since you technically cannot bring your own food so to know that they can go to the counter, get their kids anything they want to eat and then leave a trail all over the floor, well, I found it to be highly irritating! I was also bothered by their lack of involvement with their children, I'm sure they meet there routinely and it's their mom time while the kids play, in fact, that's the punchline for the place, but I was just thinking how much they take for granted that their kids are normal and socialize and play when we have to teach Tyler every part of all of that and sometimes no matter how hard we try to engage him, we can still be unsuccessful at times. Of course I rarely have an opportunity to be with just Ben and give him my full attention so I was gonna get all I could :)

So I had wondered how their morning went with their kids compared to mine. Here's how mine went: Ben woke up at 3:30 cause he was cold so i covered him up and struggled to go back to sleep cause I had a massive headache so it was 5:00 before I finally fell asleep and then I got up at 5:30. Tyler woke up at 5:45 so I was fresh out of the shower and not nearly ready and trying to figure out what to do cause you can't leave him alone. We've started giving Tyler a snack before school so we can get some of the supplements into him that he doesn't necessarily get at school, i.e. just cause we send food (premixed with supplements) doesn't mean he eats it all or if any at school and so we try to get breakfast supplements in at home to minimize what he has to have at school in case he doesn't eat something that we needed him toe at. So he sits at his table and watches a video while we give him yogurt laced with multivitamins, calcium, b6, and... I can't even remember what the other one was I put in this morning. we've just added more and are working on a good system since we are coming and going so often so we know who does what, oh and he needs the digestive enzyme with each meal so we had that in his a.m. milk. So we give him that while he watches his video which he's been doing great at but not today, today he didn't want to sit, he didn't' want to eat, he was just not interested. Ben woke up in the middle of all this. He was cute, said he was "very shivers".. he gets cold when he sleeps. So I got Ben hooked up in the chair so I could go back to Tyler and Ben said his milk was too cold (teeth are sensitive since he hit them on teh floor a few weeks ago, oh and we went back to dentist today to have that checked). So I go warm Ben's milk and come back to Tyler and cycle between no bites, stopping video, screams/flailing/throwing self down/pinching me (all the while praising Ben for being calm and good since usually he'll scream when Tyler is cause he sees Tyler getting attention for it) and then obviously Ben was also watching the video that I've stopped to get Tyler to act the way I want so I can start the video again. That was just one out of about 5 of the issues we had getting out the door this morning. Anyway... I just wanted to say to those woman, you have no idea how good you have it, stop complaining and play with your damn kids!

Ok, on to other things. Tyler is still doing very well at school, he did cry a bit today when we went in but things were a bit abnormal since Ben was with us so he may not have realized that we were still going to school (even though I told him) but once we got in and I walked him into class he was great. They said he had a great day when Steve picked him up. We are going to start the anti fungal medicine soon now that we've finally got a plan in place to get all of the supplements into Tyler that we needed, I think we need one more prescription to be filled. We get to spend some good one on one time with Tyler this weekend since Ben is going to stay at his aunts for the weekend. We are going to see about getting Tyler a few new toys to help find new things to engage him with when playing downstairs. We are also going to work on more signing this weekend so Dad and Tyler can begin signing more together.

Also just wanted to send another reminder, as I feel sometimes people forget, that we barely have time to pay bills, let alone make phone calls or special trips to the store to pick up birthday cards, we struggled to find time to get Ben back to the dentist cause our schedule is so tight. We certainly never intend to forget anyone, however, it is taking all of the resources we have to get through each day and we just don't have a lot left to give at this time. Which brings me to the holidays, please remember that although most of you associate family togetherness/happiness with the holidays, to us, the holidays are pure hell, they have been ever since the boys were born. First year was screaming babies and waiting for test results for Tyler, second year, were colds and major meltdowns/messed up trips. At our house, we keep the lights and decorations to a minimum and will likely open presents throughout the week rather than have all the crazy on one day, we certainly don't expect anyone to make these changes for us at their own homes, but please be understanding that we will likely limit our travels this holiday season as it's an extremely difficult time for Tyler anyway and then add in his diet this year (wasn't on it last year) and that we'd have to bring all his food/dishes/cleaning supplies/etc. and then a million other support items to help him get throughout the day at a time when our family is already emotional drained... well... I just am not sure we are strong enough to deal with it all right now, so please don't have any expectations of us or I'm afraid we'll likely let you down.

11/1/08

Halloween night was pretty successful. We went into it with a really good game plan and had supports in place for when they were needed and it all went very well. Tyler went to a good 8 or so houses before he had any issues. He didn't take the candy from people or reach in and get candy but he did willingly walk up to all the houses and had no problem walking up to them and walking away even with all the other commotion and kids around so we were really impressed. We worked on signing for candy and signing thank you and once he had started to show signs of overstimmulation we got out his tricycle so he could ride around with Dad and grandma while Ben trick or treated to get a little bit more exposure to everything without having to full participate. It went great, and Ben had a fantastic time. Ben hit nearly every house in our neighborhood and was out for almost an hour and 45 minutes! He loved it and keeps asking if we can go trick or treating. A big thanks to Grandma for coming to help with Halloween, we could not have done it w/o her, at least not successfully!

Saturday morning we took the boys to the zoo. Ben has literally been asking every day when pick him up from daycare if we can go to the zoo so we took advantage of the warmer temperatures to get one more visit in this year. After much discission, we decided to go as a family (Tyler's not much interested in the zoo yet) and that Dad and Grandma would walk around with Ben and have fun and my role would be to ensure that Tyler stays regulated and trying to get him engaged if possible. Tyler did require quite a bit of support at he zoo but it was expected. In terms of support I mean bouncing, lifting, toy distractors, warning about leaving an area in a certain amount of seconds, signing what we are coming to next and what to expect, but it all worked cause we never had any major meltdowns, I think there was only one time that he kind of put his head down on the ground and I had to protect him. Other than that it was just a lot of bouncing him around and warnings. He even enjoyed the sloth bear, this was a great opportunity for us to practice our bear signing! Oh, Tyler is independently singing for lion. If you point to a picture of a lion and say what's this or if you say what says roar or if you say lion' he'll sign for it' yeah! So we are hoping since he liked the bear so much that we can get him signing bear on his own soon as well. Overall we tried to have a weekend of things Ben wanted to do so I was kind of assigned to Tyler for most of those activities.

WE went on a "bike" ride Sunday morning which is really just Ben pushing his tricycle and then Tyler rides on his while I push him, however Tyler didnt' want to have any part of this activity. We spent a good two minutes iwth his head on the concrete (my hand underneath it) while he got rhough his frustration. I gave him a choice between walking or riding the bike and eventually convinced him that walking was a better option than having our head on the ground. So we alternated between running, walking, and me carrying him. Of course I made sure not ot carry him if I had asked him to walk> once you place a demand you have to follow through with the demands, but to help keep him regulaated I periodically carried him and then Steve helped me "swing" Tyler through the difficult areas on the walk. He doesn't always have trouble with these areas but since the walk started out so rough I figured he needed the extra support. The weekend in general was a lot of stimulation for him with halloween and the zoo so by Sunday I just knew he needed a little extra help. Plus with the changes in school and we've added additional supplements, he's just going through a lot of changes.

But this weekend did bring a lot of concerns for me. I was hoping after the first part of the study ended, I could spend a little more time with Ben, however, since I'm the one trained to work with Tyler and help him through situations it makes the most sense for me to be with Tyler so as a mom, this weekend was tough for me. Torn between the one child that needs you most and the one you feel you are missing out on is very hard. So I'm going to continue my plan to find ways to spend time with just Ben, we just may have to do it outside the house. When I'm home, Tyler very clearly prefers mom and sometimes it's hard for me to even cook. When we try to separate Tyler from me so that it can be easier for me to spend time with Ben alone,T yler doesn't easily forget where I am and sometimes won't even let go of my hand. So again we are dealing with those things, helping him transition to go play with dad even if mom is home. WE are also working to have Dad learn new ways to help get Tyler engaged and of course it would help if we got some new toys to play with so Christmas will be coming at a good time for everyone. But for now, it seems to go best if Ben and I leave the house to go do something together so we are gonna stick with that plan. Oh, Ben said the cutest thing this weekend. I was changing his diaper yesterday and he pointed at my toes and said, "Where's the color?"... ha ha ha. he's used to my toes being painted but Ihaven' thad time and apparently he noticed.

Well I think that's about all for now. Tyler happily went into school today adn they are very happy about his progress.