07-31-08 - Sad Day

Well today is a sad day. We had to say good-bye to Carrie. I can't believe how fast those 9 months went by! I took a few tips from Tyler today and avoided eye contact with Carrie when saying good bye so I wouldn't burst out into tears. She's changed our lives in so many ways and opened up so many doors, we can never repay her. As much as I wish Carrie could be with us forever, we are looking forward to the next chapter in Tyler's progress.

On another sad note, Ben caught "the fever" too. I left work early yesterday to pick up Ben from daycare cause he was not feeling well. He was still running a high fever last night and it finally broke right before bed time. He was good this morning just extra whiny but no fever. We had speech therapy at our house this morning as well as our last visit with Carrie. The oldest daughter from day carecame over to play with Ben while I worked with Tyler during Carrie's visit and she's staying with him the rest of the day. We've missed so much work lately (Steve was out yesterday morning for Tyler's DAN doctor appt and then i was out in the afternoon to care for Ben) and then with vacation last week and another group of appts next week, we just couldn't take another day off, so thanks Ashley for taking care of our little guy today!

Ok, back to Tyler. He has been extremely chatty lately. A few days before we left on vacation, we started him on new supplements. One day I'll update the blog with supplement names and what they do but for now let's just say we added 2 new things. Anyway, his chattiness seemed to start a few days after we started the supplements. He's really really talking a lot now, even when we are getting close the next shot day. I.e. he gets a B12 shot every 3 days and typically on that day he's supposed to get the shot, you can tell that he's needing it (not talkative or making good eye contact). Tyler has been saying "horse" for a stuffed horse head he has. If you push it's ear, it makes horse sounds. So we make him say "horse" before we push the button it's ear. It's working great. He had excellent eye contact during Tuesday's session and today's session. He also was very consistently saying the "sh" sound for push to push the cars. There was about a 4 - 5 week period where I felt I was really struggling to get him to make sounds, but now he's really making a lot and many new sounds. Speech commented today about how hard he's trying to talk right now. If you want to compare it to a typically developing child, think about all the sounds they make when they begin babbling, that's what Tyler's doing right now and he's beginning to link different sound together which is fantastic.

His receptive language is still going very strong! Today he demonstrated for Carrie that he knew the names of the people on the cover of a photo book. We have a photo book on our sofa table that Tyler likes to pull down and look at. He likes the cover which just has one picture of Steve's brothers and sisters. He likes to point and have us label the names. I will say "Tyler touch Chuck" and he'll touch Chuck's picture or Tyler touch Daddy and he'll touch daddy's picture. When Carrie saw this today she was amazed. She said that it takes a very very long time to train children with autism in face recognition. The face is very very hard for them to look at due to all that goes on in the face and that it usually takes a long time for this skill to come into fruition. Yeah, Tyler!

He also, on his own free will, became interested in a non-sound making puzzle today which is the first. although he did get easily frustrated with the puzzle, we put in a lot of positive supports to make sure he stayed regulated and moved him on to something new when we realized he had enough.

Carrie is working with another family in Jackson right now who has a daughter who is 2 and on the spectrum. She just visited the same DAN doctor we have and was feeling overwhelmed with the protocol so Carrie asked if it would be ok for her to contact us and of course I said yes. That mom had called me yesterday while I was driving to pick sick Ben up from daycare. I basically just did a quick run down of what we've done so far, where we are now, what results we've seen, the cost, etc. I also gave her a piece of advice that we follow religiously. I said, don't look ahead in the protocol, just know what you are supposed to do today and tomorrow and learn the next steps when you get there. No reason to be overwhelmed by an entire protocol, when you do everything step by step anyway. Which brings me to the update on Tyler's appt with the DAN doctor yesterday...

I didn't have a lot of time to talk to Steve about the details or a lot of time to do the necessary research yet, however, here is what I do know. Tyler's urine results were high in yeast and bacteria. The doctor wants us to put him on an anti-fungal that will remove yeast from his system, something that will help combat the bacteria, probiotics and nystatin. We also need to put him on a yeast free diet. All of that may not sound overwhelming to you however he already takes a lot of supplements and since he's not old enough to swallow capsules we hide it in his food and drinks which can get tricky because he's totally on to us :) The doctor also mentioned that as the yeast is being removed from his body, we may see some regression which could last as long as two weeks and it may make him sick as well. Here's a link to a website that explains the biology of yeast removal from a child with autism .http://www.nutritioninstitute.com/Autism.html and here is a link to general biomedical treatment information and what it all means http://www.autism.com/treatable/adams_biomed_summary.pdf. Since we run the risk of another illness, we are decided to wait a month before we make any changes or administer the medication. We want to be fully up to speed on all dietary restrictions and make sure we have found replacements where applicable for any of his favorite foods and make sure he still has enough choices for food because obviously want him to continue eating ;) This will also allow us some time to accrue more time off since we seem to be burning a lot lately and get everyone back to normal before the next step. Plus I'd like to start the new phase of the study on a good note :)

So the the DAN protocol can indeed be overwhelming but we have faith in it. All of the children we know that have recovered have followed the DAN protocol at least to some degree. We also know that we've seen improvements in Tyler with each step we've taken so we trust that we'll continue to see improvements as we move forward. Our mindset has always been, we will do whatever we need to do to help Tyler as long as it's not causing him harm. After a while, you kind of just become numb to the cost of everything. We could be giving Tyler a chance to go to have a relationship with his brother, to go to mainstream school, to play sports, to have friends, to have a family one day... you can't put a value on that.

07-28-08

So I have so much to say since it's been a while since I've updated the blog. I'll start by giving a huge thanks to Aunt Susie, Uncle Kurt and Justin as well as anyone else that helped care for the boys this past week while Steve and I took a much needed vacation. There was a lot of preparation involved in regards to packing for Tyler because we needed to include not only the normal items but also his food, medicine, dishes, soap, sponge, etc. Literally everything but the kitchen sink :) However, the boys both did fantastic. Everyone commented on what a difference there is in Tyler between last fall and now, almost unbelievable they say. Thank goodness.. That kind of feedback is music to my ears because by no means is any of it easy.. which brings me to my next point. Remember when I quoted a saying a few weeks ago about the rainbows along the way of tough journeys.

My last blog mentioned the fact that I hurt my back a couple of weekends ago. It's still not 100% but getting better each day and I'm very conscience about the way I move around, however, having 2 2 year old's and one that requires a lot of physical support can be very hard on someones recovering back. So vacation was great. We picked up the boys and had a long weekend to spend together as a family. It seems that life wanted to send us a sharp reminder of just how difficult our journey can be at any given moment. Somehow mom caught a cold while on vacation but wasn't slowing me down much. Ben had a runny nose and other than being a bit on the whiny side (which he can tend to me anyway) he was doing ok. Tyler was acting different, however, we anticipated some regression since we had been away and he was in a strange place and we weren't around. we tried to set up as much supports as possible (i.e. prepare him with pictures, talks, familiar items) but we knew it would be an adjustment getting back into real life so we decided not to push him to far this weekend.

Sharp Reminder #1: We went for a walk as a family on Friday night. we've done this often and we take Clifford with us. There are a few areas that Tyler sometimes struggles with so we have supports in place to get through those areas and in general he does pretty good. This night though, no one was all that enthused about going for a walk except for Clifford! we got to the end of the driveway and Tyler was refusing to walk, he does this kick up his feet as to fall to the ground on his knees. If you let him then he will bang his head forward on the concrete which obviously I can't let happen. So we used all of our tips to get him moving.. bouncing him up and down (ouch back), stopping and taking a break and counting, swinging him between parents. Stopping and actually playing on the sidewalk with a ball for a break. All this happened within the first 20 feet of the walk. we were stopping about every 5 feet to give him a break from moving forward.. again (ouch back) because there are continual lift ups, lift downs, putting my hand down to prevent him from banging his head, lots of happy praises when he's doing well. Poor Ben was standing with Daddy and Clifford and wondering why on earth he had to come on this walk that he didn't want to go on, if we weren't actually going to walk. I'm sure Clifford was thinking the same thing, they were so patient. A neighbor had a guest arrived who comment on our "picnic" in the middle of the sidewalk. I began to think to myself...if they only knew.. If they only knew that if we didn't do all these things, my son would very likely hit his head so hard on the concrete that it would split open. If they only knew... I'm sure even in all that they know about autism, they have no idea the supports that you have to put into day to day life just get through it safely. Anyway, we shortened our walk to the small circle and about half way through Tyler was hysterically screaming, I was being very patient and waiting with him talking to him about his feelings and knowing that the neighbors must be wondering what on gods green earth is wrong with that child. I realized that no matter what I did to support Tyler he just wasn't wanting any part of the walk so I picked him up and swung him around in circles the rest of the way home which managed to get some giggles out of him. Once we got home we got some juice which is what Ben wanted the entire walk and then we went upstairs to play which I think is what Tyler wanted before we went outside and what caused his resistance to the walk in the first place.

Sharp Reminder #2: We took the boys to MacDonald's late morning one day so they could play in the playland. We had packed a lunch for Tyler and had brought in a few supports in case he wasn't happy about play time. Ben had been there before so he knew right where to go and what to do. Tyler hadn't been there before but it's similar to the tree house that he has frequented. Oddly enough, Tyler climbed right into the highchair so I figured he must be hungry (he never wants to eat!!) so I fed him his lunch a little early while Ben and Dad played. Then Dad and I ate while Tyler was climbing around the playland with other kids, yeah! Ben also decided it was time to eat his nuggets, it was kind of nice getting them to eat in shifts. There came a point that Tyler kept trying to leave the room so we got out some of his balls to play with, Ben was still eating at this point. Some girls wanted to play with the balls and Tyler and dad was supervising and said he didn't think it was a good idea as Tyler wasn't interested in sharing. Soon after Steve and I talked about ways he could have incorporated the girls into Tyler's play which would have helped Tyler too. The girls were old enough to understand Tyler was different. In fact, it didn't take long and I'm sure most of the parents in there realized Tyler was different. One couple was shocked to hear they were twins since I was hand feeding Tyler (lots of support eating in a new place) and he doesn't talk at all where Ben is running around speaking in sentences and feeding himself, playing with kids, etc. There came a point where the balls were frustrating Tyler so he went to bang his head on the floor so we dove forward to stop him and talked him through it but everyone for sure knew at that point that something was going on. We had been having trouble with diaper changes since vacation so we decided to change the boys in the van so it would be more familiar than MacDonald's and it was time to leave. Ben and dad went out first to put the seat down in the van. You can't go outside with Tyler and not have both hands available to make sur ehe doesn't run in front of a car. So then Tyler and I left and diaper change was awful. Again, we put all supports in place, we gave him toys, we sang, we let him up to give him breaks, etc. and he was very resistant to it, screaming and writhing with the strength of a 200 lb man. we got Ben into dad's car, mom was leaving after to do grocery shopping while boys go home to nap, and we both worked on Tyler and after about 5 minutes we finally got him changed..lots of tears and sweat! Then I went to get him in the car seat and give Ben and a kiss and poor Ben was crying because he seat belt was bothering him. when I got to the store I read a story about a mom who was having to institutionalize her son because he was just getting violent with family members, including little ones. It broke my heart and I will admit I cried. I had just had a 10 minute struggle with a 25 lb 2 year old, I can't imagine that struggle with him as a teenager. I just wouldn't be able to physically do it. So I hoped beyond hope that we are making all the right choices and that Tyler would never have such strong behaviors and that I would never be in a situation to have to make such choices.

Sharp Reminder #3: Sunday late afternoon we decided to take a drive. I needed gas and wanted to show Steve where the running trail was in case I ever decided to do the long run again. we did those things and when we got home, Steve sat Tyler down and I was about to go make dinner (which we had cooked many meals in advance while the boys were napping that day) so by making dinner I really mean just heating up. Anyway, Tyler reached is arms up and just looked sick. So I picked him up and sat in the chair and held him, he was very hot and lethargic and wouldn't even sit up. I told Steve he was going to have to handle dinner and Ben because Tyler just needed to be held. Steve was great, he actually hand fed me my dinner, awe.. So anyway, he and Ben went to take Clifford for a walk I was going to make some phone calls about Tyler's appts. today. Tyler could very well have his own calendar. This is a very busy week for him. Today was the standard speech therapy at 8:30 and then Occupational therapy at10:15. So i left a message that we'd be cancelling and then left a message with work that I would not be in the morning. I had previously asked Steve to get me a bowl in case Tyler vomits...like father like son, Tyler has a very weak stomach when he's ill. Ben later decided to play with the bowl. Tyler stayed on my lap watching videos until they came back. I told Steve I needed to change his diaper and then we needed to take his temperature. Taking his temperature takes 2 people because he hates his ears to be touched, but with the way diaper change was going, I didn't dare take a rectal reading. So that didn't go so well when Steve and I were "discussing" that it didn't work, Tyler vomited all over my himself and me. So he and I went to the bathroom stripped off our clothes, I washed his hands and face, etc. Steve took the dog outside becuase he was trying to eat the vomit and kept Ben occupied while he cleaned up. I took Tyler upstairs to get new clothes and change my shirt and sat in the chair with him until dad put Ben to bed. Steve double layered Tyler's bed in case he vomited again so we could just strip off the bedding. I rocked him to sleep and we laid him down and hoped that he'd sleep and feel better. Then we discussed how on earth we were going to accomplish everything this week. For immediate reasons we decided we'd split Monday and each take 1/2 day so we could care for him. Oh, and the dog decided to vomit on my shift, lovely! why is it always the moms who get puked on!

Tyler had the missed appts. from today which would be impossible to make up. He has his normal appt. with Carrie on Tuesday and then our parent fidelity taping right after. Normally it wouldn't be a big deal to reschedule but we missed all of last week because of vacation, the previous week because of my back and this is the last week of the study so we have to do a taping this week. But even if Tyler was feeling better, he certainly would not be 100% and I didn't want that to be the last taping they have of him plus he needs to rest and not be pushed too much. So Carrie and I talked and she's gonna do more of a general consult/discussion this week and we moved the videotaping to Saturday which is perfect because Ben is going to the zoo at Grandma's with dad and grandma so Tyler and I will have the place to ourselves. Wednesday Tyler has an appt. with the DAN doctor to review the results of his urine test and discuss current supplments and next steps. After that meeting I'll update you with all that supplements he's on now since I know we'll be adding more. Thursday he has his normal speech therapy and then the community visit with Carrie and then Friday he is doing that ADOS-T training session at U of M to help everyone learn how to administer the ADOS-T which is an amazing new tool in the autism community and will help standardize testing in toddlers to allow for earlier diagnosis and access to treatment. Anyway, as you can tell, not the best week for him to be sick let alone for us to miss more work since we were both on vacation last week.

Which brings me to the rainbows. Yes the journey is a struggle and I will never try to sugarcoat it and make it sound glorious or easy because it isn't. However, in the midst of the crazy weekend, Tyler has been amazingly talkative. He's verbalizing a lot and really concentrating on your mouth when you talk to him. He approximated words for Horse and Swing to me this weekend. He also signed swing and all done which he doesn' t usually do on a routine basis. He came up to Ben and hugged him all on his own when Ben was upset. His receptive language is amazing. He showed me he knew his colors this weekend as I would ask him to touch a certain color on the ball. I also do this to the animals on his book that he doesn't have me label for him(he has certain favorites) so I know he's retaining a lot since I rarely tell him the names of those animals. He's feeling much better today and since Ben wanted to shower with Daddy I had a chance to work with Tyler one on one in the bathtub and we've added more complex tasks to that routine as well. we've begun to label is bathtub letters and shapes, we practices putting toys in and out of the boat and sang new songs to get him clapping. There was maybe a total of 2 minutes that he wasn't engaged with me out of all of bath time which is very very good for him. I usually struggle to compete with the water.

And I can't even begin to tell you how amazing Ben is. Let's see.. this weekend he told daddy to "finish your lunch" "wake up daddy" "I missed you mommy and daddy". He also told me he needed to go on the potty chair and we sang "plop, plop, fizz, fizz" while he went pee like a big boy on the chair. He's getting really good at going potty like a big boy. There were a million other adorable things that makes you want to squeeze and love on him forever. we had lots of snuggle time tonight after bath/shower time.

Although life throws many harsh reminders our way as to just how stressful the journey can be, it also blesses us with rainbows along the way to gently remind us that we are doing all the right things and have two beautiful boys and a group of people who support us through it all. Next week starts a new chapter in our life, new medicine from the DAN protocol, a new segment of the study and hopefully new breakthroughs.

Love to everyone!

07-15-08

The weekend did not go at all as planned. Somehow I pulled a muscle or two in my back picking Tyler up out of his crib on Saturday morning which meant that I spent the rest of the weekend and Monday resting my back. Thankgoodness it was a grandma weekend because both Steve and Grandma stepped up to the plate and got everything done around the house and even the shopping. Today's session also had to be cancelled because of the physical requirements. If you've never seen a session, there is quite a bit of physical work involved, lots of lifing and bounch Tyler especially when he's unhappy about something and I can barely life myself at this point :)


Both Speech and OT gave me some good news about yesterday's sessions (which occur at daycare) so I thought I'd share those with you. We are now doing speech twice a week once on Monday and then again on Thursday before we see Carrie.

Speech: Tyler did a nice job today. He is still testing and trying not to do what he knows we want him to do. But it was easy to gently persist until he complied. He made lots of sounds again and engaged in the activity with the “Kaufman characters”. He labeled the dada and said mmm. He also said go when we played with cars. Oh and he signed all done very plainly with a verbal cue “are you all done”. He was a pretty happy little guy this morning.


Occupational Therapy: He was in a good mood, had good eye contact and smiled often! We did finger plays and movement, popped packing bubbles to “pop goes the weasel” * he could do more of this at home to improve his pinch and hand strength.
We put balls in various toys, blocks in and emphasized “open/close” the door. I brought an air table and he really liked to put the various parts “on” and “on top” as well as turn the button on/off. We put pegs on/off and stacked small blocks. He did some pointing and guiding me to what he wanted.


That's about all from our end. We started more supplements last night so we'll see what changes they bring, and Tyler goes back to the DAN doctor in two weeks and we'll be adding more at that point, so I'll keep you all updated on those things.

Mom and dad will be going on a much needed vacation soon so I apologize if the blog is not kept up to date.

7/11/08 - Recovery Stories

Mother writes of son's autism
Posted by Lisa Carolin The Livingston Community News July 11, 2008 00:00AM
Categories: Features
BY LISA CAROLINThe Livingston Community News
A life-changing experience and an opportunity to write a book about it now have Kristi Chrysler touring the country talking about her son's autism.Chrysler, who is originally from Brighton Township and now lives in Howell, has five children: Chloe, 16, Heather, 14, Richie, 11, John, 9, and Kyle, 8, all of whom she home schools. Her book focuses on Richie, and it's called "Autism: Recovery Against All Odds."
"It's the chronicle of my son's journey through autism, from severe and being told to institutionalize him to a full recovery five years later," says Chrysler. "It was not a miracle but was five intensive years of prayers and diligent work by many, which brought him to recovery."
"Autism - Recovery Against All Odds" details the struggles of one local family faced with this childhood disorder.

Chrysler says Richie was developing normally until what she calls outside triggers compromised his immune system and he developed autism. The family used a biomedical approach plus therapy to help him.
Richie was diagnosed with autism at the age of 5 and began seeing psychologists, a psychiatrist and pediatric neurologists. The family used treatment that included eliminating such food ingredients as gluten and the dairy protein casein along with numerous other foods that Richie was allergic to. He also took a variety of supplements.
Richie's physician is Dr. Sidney Baker. He is a co-founder of Defeat Autism Now, a project of the Autism Research Institute of San Diego to foster a dialogue among parents, practitioners and researchers concerning the treatment of children diagnosed with autism. Baker, whose practice is based in New York, also co-authored "Autism: Effective Biomedical Treatments."
"Someone can recover from autism when the right combination of factors come together," says Baker. "The fundamental issues in autism are problems in detoxification chemistry, problems in oxidative stress and problems characterized by inflammation, of the gut and brain, for example."
Baker says the treatments used for those problems include avoiding toxins, allergenic foods and correcting imbalances in the population of germs in the digestive tract where antibiotics disturb the balance, using certain nutritional supplements, medicines and other measures to remove toxins from the body.
While the removal of gluten and casein is a popular dietary treatment for symptoms of autism, it is based on the hypothesis, not yet scientifically validated, that those proteins are absorbed differently in children with autism spectrum disorders and act like false opiate-like chemicals in the brain.
Chrysler says her son also received speech therapy, occupational therapy, physical therapy, sensory integration therapy, auditory integration therapy and a form of applied behavior analysis therapy.
"The story is one to encourage people to persevere as they run the race set before them in life by overcoming obstacles along the way," says Chrysler. "I share how my faith in Christ was a huge reason I did not give up the hope to keep my son out of an institution while I pursued avenues of treatment for him that led to his recovery."
Chrysler says she lists ideas at the end of each chapter in the book to help people with such challenges.
"The feedback I've received from readers is that the word 'autism' in the title could be replaced by any other word: Cancer, gifted child, life and more," says Chrysler.
She says she never planned to write this kind of a book. A year and a half ago she was at a writer's conference in Tennessee with her oldest daughter and was asked to share something she'd written with a publisher from New York, who took interest in the subject and encouraged her to write the book.
Chrysler says all of her children played valuable roles in Richie's recovery, and the family has started a nonprofit foundation called Kristi & Kids Inc. to share their story, encourage and educate others.
"Some of the activities Richie has now been able to participate in include all kinds of sports, Young Marines, choir, riding bikes and motorcycles and helping to baby-sit," says Chrysler. "The child who was once so violent we could never leave him alone with anyone is now the most gentle, kindhearted young man, who loves to help other children. Getting the word out that autism is treatable and often recoverable is truly our goal."
Local author
What: A new book called "Autism: Recovery Against All Odds."
Who: Author Kristi Chrysler.
Subject: Chrysler's son's recovery from autism.










There Are Days
Journal entry dated 25 April, 2007. It had been nearly a year since our daughter was diagnosed, and she had been on the DAN! Protocol for about 3½ months.“While my life is not nearly as wacky and difficult as depicted in some stories about autism, there are days. There are days when it seems like no one "gets it". Like, trying to convince her Pediatrician that she really does have a problem and I am not an overly neurotic mother creating problems where there are none. That her screaming and panic at the sound of a vacuum is NOT an attempt to get my attention and that her self-limited diet is not because I haven’t offered her a dozen other foods a bazillion times.Or, like trying to convince the County that she really does have processing issues. That she doesn't get it if I say, "Get dressed." but she understands when I say "Put your clothes on." That if you get her going on her own topic, she’s fine, but try to teach her something, and sometimes you just get a blank stare, drifting or screeching. And if you listen carefully, the tenses, pronouns and words are just plain wrong and out of order. And, feeling like I have to always explain her behavior to well-meaning friends and neighbors. That she can’t just come over and play because I still have to ‘trail along on the sidelines.’ That her manic running around is just that. Manic. This is not an excited child running around playing WITH other children, she’s totally out of control and if I don’t keep a lid on it, she’ll give you quite a show when it’s time to leave."[But, it wasn’t just about others not getting it…it was also about me, and the never-ending questioning, second-guessing and guilt that was my constant companion.]"Not really knowing whether having friends is something she wants, likes, needs, misses or doesn’t care about. Further isolating myself by bucking the overwhelming pressure to enroll my child in extra-curricular activities.That having autism spectrum disorder: Pervasive Developmental Disorder/Aspergers, Anxiety, ADHD, Receptive/Expressive Language Disorder and Sensory Integration Disorder, doesn’t mean she isn’t cute, adorable, pretty or smart.That even though I’m grateful my child is high functioning, I am still disappointed.That no matter how much I confront the sadness and discomfort, and feel like I’m handling it and dealing with it, I am sidelined by an innocent event, observation or comment and feel like I have to grieve it all over again.The guilt over knowing that if I’d done something sooner, we’d be that much further ahead.Now that she is diagnosed gluten and casein intolerant, the needs of a special diet have added to the strain. It isn’t just as simple as going out when I’m tired and don’t want to cook. I still have to prep her meal.”By this date, she had been 4 months into biomedical. It was frought with ups and downs and I was trying so hard to understand our ‘new’ child. So much information was coming at me all at once and I had no idea how I was going to keep track of it all and worse, I was very afraid I was going to make a mistake. I remember staying up until the early morning hours researching, trying to make sense of it all. I got over that hump, like I’ve gotten over many ‘humps’ after that. Biomedical has given us our daughter back, but it has come at a price. A price certainly in monetary terms, as well as costly both physically and emotionally for me. As I like to say: “The apple hasn’t fallen far from the tree.” Meaning, like many parents of these children, I too suffer from body imbalance. And like many of the caretakers of these children, my health has taken a hit for the burden is great and I, too, have benefited from a variant of the DAN! protocol.But health isn’t the only thing that takes a hit. Relationships do too. Whether married or partnered, the relationship is a dance. Adding a child, and special-needs one at that, takes things to a whole different dimension. If the relationship is on unsettled ground to begin with, there is little foundation to see it through when the demands of a special needs child comes barreling in. Add to that the differences of opinion when it comes to treatment, and it becomes a lighted fuse. Divorce rates are high in families with special-needs children and I’m not surprised. It requires both parents to be adults and shoulder responsibility. There is no place for blame, ignorance, childish behavior, selfishness, denial or rationalization. My husband and I have had our moments, but we each bring something to the table in her recovery and I think we’d both agree that we’re grateful we have the other person to do this with.And, I was angry. Angry that I let the pediatrician talk me out of my concerns; that I let him make me feel like a fool; that I didn’t do something sooner. Angry that it was so hard to raise her, and I resented it being so hard, and I was angry and guilty for feeling that way and that I couldn’t just ‘get over it.’ Angry that I’d heard whisperings about the immunizations but never bothered to educate myself. …That the only way out was forward.But here we are; and here I am, now, 18 months later: No more night wakings nightmares or night terrors. She’s potty trained, eats a balanced and varied diet, is conversant, writing, reading above grade level, loving, interacting, learning about feelings and empathy, curious and asking questions, and she’s being mainstreamed. Bit by bit I can see the real person emerge. Wow. What a remarkable and hard-won journey.

7/11/08 - Big News

There is huge news in the Autism Insurance world...hopefully Michigan can soon follow suit!

NEW YORK, NY (July 9, 2008) -- Autism Speaks today commended Pennsylvania Governor Ed Rendell for signing into law the most comprehensive autism insurance bill in the nation. The new law provides $36,000 a year for Applied Behavior Analysis (ABA) and other necessary treatments, and goes beyond many state insurance reform measures by mandating coverage up to age 21 with no lifetime cap. It also creates, for the first time under Pennsylvania law, an expedited appeals procedure for denied claims as a safeguard to ensure compliance by insurance providers. Private insurers will be required to provide coverage beginning in July 2009.
In addition, the legislation turns the existing state welfare program for autism into a statutory requirement, ensuring that those who receive government-provided services can continue to do so. It also allows for the development of a private sector delivery system with insurance reimbursement, offering families an alternative to coverage through Medicaid.

Research News: http://cosmos.bcst.yahoo.com/up/player/popup/?cl=8763620 if for some reason this doesn't work go to http://www.yahoo.com/ where there is a video link regarding new research regarding the genetics of autism.

Tyler Update: Tyler is now getting speech therapy twice a week. So we had speech as well as our session with Carrie on Thursday. Ben was home with us for both sessions. For the session with Carrie we worked on outdoor play in the front yard (i.e. outside teh safety zone of fences). We were able to successfully engage Tyler in activities that kept him within the boundaries we wanted. Here's how we did it. I set up two blankets next to eachother as a "play area" to help Tyler identify where he's supposed to be, plus he's not super fond of the feeling of grass! We also brought out some of his favorite toys from inside to the blankets, but he was not easily engaged in these activities and kept wanting to wander off down the sidewalk. So we got out his bin of beans which he really really likes and that kept him contained. We occasionally would slip out the beans and read a book for a minute or two but then he'd quickly request the beans again and we'd give htem back. The beans are great for keeping him entertained, however, they are hard to engage with him in so we don't want that to be the only thing he'll play with outside. Once he learns the boundaries of front yard play, we'll be able to hopefully play with the other toys longer. Ben did great, he used sidewalk chalk and colored.

Then we all went for a walk (minus Clifford). Carrie gave some good tips for getting through the areas that Tyler typically struggles. She suggested not avoiding them (unless we have to) but instead getting trhough them very quickly with distracting techniques... If both steve and I are walking we can swing Tyler by the arms, if it's just one of us we can kind of bounce him quickly past the area. We did this yesterday and he did perfect. I am very happy with the amount of time we were able to spend outside w/o having to chase Tyler down the entire time. You may be wondering where he'll go if we didn't stop him.. he'll walk down the sidewalk, go in the street, go into peopls garages, go into water sources, he'll walk of cement steps, patios, etc. (he's still a bit clumsy at times), he just has to be watched 100% of the time to keep him safe as he doesn't have the normal fears and desire to be around caregivers as typical toddlers.

Grandma is coming this weekend, yeah! Steve and Grandma are going to take Ben somewhere fun tomorrow morning so mom can get one on one time with Tyler. We hope to take the boys to the spinkler fountains Saturday evening if the weather is nice and on Sunday we'll have more fun outdoor play since that went so well last weekend. Both boys really played and they both wanted to play with mom and dad.

On another note, not sure you remember or not, but the first study Tyler participated in at U of M was called the FIrst Words/Toddler study. This was basically just evaluations so it wasn't really benefiting Tyler other than us getting reliable data on Tyler's progress on a regular basis. One of the tools used to obtain this data is called the Autism Diagnostic Observation Schedule (ADOS). The ADOS is a semi-structured, standardized assessment of communication, social interaction, and play or imaginative use of materials for individuals who have been referred because of possible autism or an autistic spectrum disorders. The ADOS can be used to evaluate individuals at different developmental levels and chronological ages, from toddlers to adults, from individuals with no speech to those who are verbally fluent. What's really exciting is that they have finalized the ADOS-T which is a standardized test for toddlers. It's exciting because this new tool, when widely used, will allow professionals to diagnose toddlers at a younger age using a standardized tool. We all know the earlier the diagnosis adn intervention, the better chances for the kids success. Anyway,t hey are having a training day coming up to teach professionals throughout the US on how to administer the ADOS-T. Tyler is likely going to participate in this as being one of the kids they put throgh the test. He's been through it beforem and is familiar with the settings, etc. U of M has done so much for us that this is just one of the ways we can pay them back and also help the autism community, parents, kids and professionals.

Last but not least, here's an article recently published in wall street jounral talking about early autism diagnosis and costs of treatments, etc.
http://online.wsj.com/article/SB121545978096433273.html You'll see in here that parents pay up to $5000 just to get the autism diagnosis. Thanks to the First Words/Toddler Project at U of M, Tyler's diagnosis didn't cost us anything. Many doctors/school professionals, etc. are hestitant to diagnosis earlier than age 2 and many times do not diagnose before age 3, Tyler was able to get diagnosed at age 18 mos a result of the study and standardized tests and we didn' thave to pay a dime. The diagnosis opened up new doors for us so we are very appreciative.

070808 Update

Tyler said "no" yesterday at daycare at the appropriate time, yeah! He has shaken his head before to indicate no, but he also does that as a self stimmulating behavior so we were never quite sure when he used it appropriately, but yesterday he said no, when he was being offerred more food, great job buddy!

I have to say I was nervous about today's session and videotaping but everything went well. In fact this morning, before the sessino, Tyler signed "lion" on his own after pointing to a lion in his book and he also pointed to at least 5 animals when I asked him to by saying "tyler, touch fox... tyler, touch dog..." he did all 5 without mistake. His receptive language is really coming along. I know speech is also working with him on pictures.

He did well at coloring today too. I had taped blank pieces of paper to the table prior to Tyler sitting down which seemed to help since everything was already set up. he tolerated holding the crayons for long periods of time and we used the labelling of the color of the crayon as a reward for him coloring. We had initially had blocks with the crayons as a support but we didn't need them today.

So I read an interesting article today about an Iraqi mother of 3, one of whom had autism and she knew she had to get out of the war torn country in order to get her son the help he needed. She now lives in Syria. What endeared me to the story was the way she feels about her situation. "She worries that she is not a good mother -- that she has not done enough for her children. She is wracked with guilt for her two other children, worried that she does not pay enough attention to them." It seems that no matter what country, nationality, religion, background, circumstances, if you are the parent of a child with autism, especially if you have another "typical" child, the worry is the same.

Carrie reminded me today that we only have 5 visits left with her, (we'll miss you so much Carrie!!) so we are going to use Thursday's "community" visit as a peer play time with Ben and work on playing outdoors, in the front yard, where there are no boundaries.

Grandma is coming this weekend so we are trying to plan something fun for the boys, pending weather of course, and we also have lost of preparing to do before vacation. Lots to be done.

7/7/08 Second Update

Today is one of those days that I needed some inspiration, something to give me hope. I found something that provided just the hope I needed.

So I thought I'd share what I found.
http://www.youtube.com/watch?v=QlBmh3Hqs-0

I'm blessed to have already heard Tyler say I love you!

“We may run, walk, stumble, drive, or fly, but let us never lost sight of the reason for the journey, or miss a chance to see a rainbow on the way.”

7/7/08

Hope everyone enjoyed their holiday weekend. The boys had an excellent weekend as the weather was perfect and we were able to spend a lot of time outdoors. Here is a video of me working with Tyler. It's just a short clip but there are a lot of positive things to say about it. Working with Tyler outdoors is tricky because there is so much going on outside, he's easily distracted and has a hard time paying attention to anything. Also, since this clip involves water play, it's also very tricky to get him to engage because he loves water so much, it's almost always more fun than mom. But in this instance, he actually kept coming to get me to come play with him. I was testing him and would play for a few mintues and then go sit down and he'd walk over and get me and bring me back to the ball. In the clip you'll see him touch the ball, he wants me to tell him the color that he's touching. He loves "labelling" so the first color I tell him. Then he hits a different color and I wait to label it until he looks at me (joint attention; eye gaze) and then I gave him the label. We were really excited because it's the first time he's sought me out to play with him during water play, usually I"m trying to insert myself into it and get him to want to play with me. Plus this comes at a time that we are really struggling with Tyler. The past 2 weeks have been tough as he's just not himself. He's more stimmy than usually, having trouble sitting still, shaking his head back and forth, etc. he hasn't had very many vocals. he's also still more aggressive/resistant than normal. Pulling his brothers hair, not wanting to take his dish to the table, not wanting to sit in his chair. Usually on our walks, there is one area he struggles with (wants to go a different direction) this weekend, we had quite a few areas that he did not want to want to go the direction we were going. Yesterday he was very resistant to go into his car seat which is really really rare. He was arching his back and pushing himself down to teh point I was struggling to ensure he didn't hang himself on the part I had already latched as he was almost completely out of the seat. You'd be amazed at how strong he can be when he's trying to resist. Anyway, that's what makes this video so special because he was really engaged and wanting to play.

7/3/08 - Have a great 4th of July

Tyler is still acting abnormal today. He's more resistant and aggressive than normal. He's been the same way at daycare. I had a hard time getting him to carry his plate to the table last night. Tyler has a tendancy to bend at the knees and drop to the ground when he doesn't want to move in the directino you want him too. It's especially tricky when you are trying to get him to carry his dinner plate. After about a 2 minute struggle, we made our way successfully to the table. Then we had a similar situation at bathtime when we had another emergency pooper where I had to quickly remove Tyler from the tub and he was not so happy about that. You'd be amazed at how strong a 25 lb little boy can be! I needed to lay him down so I could dry him or at least his feet so he wouldn't slip on teh ground but he did not want to lay down adn resisted quite heavily. I was also trying to make sure I was in a position to protect his head if he got mad enoguh to start banging it backwards against the ground. Since I only had 2 hands and needed about 4, I used my body core to help hold him down long enough to wrap a towel around him so I could pick him back up and he was fine after that. The key on all of these issues is to follow through with the demand you are placing on Tyler.

We had a community visit at daycare today and worked a lot on peer interaction. Again, Tyler isn't quite himself, very overregulated and aggressive so ti was tough to engage him for a long time but overall it went well. he did struggle with diaper change which he hasn't done in a long time so it was another sign to all of us that he's just having a rough couple of days. We worked on parachute, ring aruond the rosie and parallel play.

I talked a couple of days ago about Tyler's wandering and how it makes it difficult ot go anywhere. To put it in perspective, we have to put Tyler into his car seat first and take him out first because he'll take off. In fact, the other day when I dropped the boys at daycare, I had to get T yler out first because Ben didnt' have shoes on and I was going to carry Ben. I took maybe 8 seconds to get Ben out of his car seat and when I turned around i couldn't find Tyler anywhere, he just doesn't stay in the same spot. I witnessed something at daycare the other day that made me sad. The kids were outside playing baseball when Tyler and I arrived. As I was getting into my car I could hear the daycare provider saying ok, it's Ben's turn and as I was pulling away I saw her go up to help Ben hit the ball and then she had to stop and run after Tyler because he wanders away. He will wander anywhere without the normal fears/concerns kids have at that age about being away from familiar settings. So it made me sad because I know that the fun that the other kids were having was going to have to stop because Tyler was there and she'd have to concentrate on chasing Tyler. All of this is the reason we are really going to be targeting to get him to be able to be outside and learn to play in one area for a more extended period of time.

We are also going to continue to work on peer interaction and in order for it to be positive we have to find fun things that tyler can do or has for his peers and vice versa so that they want to interact with eachother. For example, Ty ler really really likes people to label numbers, letters, colors, and animals for him. So if he points to the number 5, he watns you to say 5. I'm going to start working with Ben and Tyler on this. Ben knows his colors, shapes, and animals so I think this would be a great way for Tyler to get some positive interaction with Ben. I'm still working on ways that Ben can see that Tyler is fun and has fun things to offer.

07/02/08

Here is a link to a video of a boy who performed on America's Got Talen last night, you can read his story below. So precious.
http://www.nbc.com/Americas_Got_Talent/video/index.shtml#mea=271761

"Little David, a boy whose autism left him mute for the first 3 years of his life, is now singing. . He is 9 years old and sings "Ben" and it is another really cute act. He's not as on-pitch as the 4 year-old girl from two weeks ago, but he's just so earnest. Piers asks him what he'll sing in the next round and he says, "I'm gonna have to think about that one." "

Autism speaks released their annual report in case anyone is interested in more information on the organization.

http://www.autismspeaks.org/docs/Autism_Speaks_Annual_Report_2007.pdf

7/1/08

Today was our first session with Carrie in over a week as she was on vacation. I spoke to her about some behavior concerns with have right now with Tyler. He's beginnign to once again be interested in the dog but he is far from gentle. He pulls on Clifford and jumps on him, etc. and Clifford is getting upset so we were fearful that Clifford may hurt him. Carrie worked with us today on that. She suggested leaving a CLifford's brush near by so whenever Tyler does go after Clifford we can have him hold the brush and show in the proper way to play with Clifford and it's also something Clifford likes. That is the plan for now.

we also introduced coloring. Tyler hasn't become intersted in coloring yet and we long to add this activity to his reportoire so that we can more easily go out to eat, go visit family, friends, etc. so he'd have something fun to do that he doesn't have to interact with people if he's uncomfortable. Carrie brought some triangle crayons and we plan to get some of our own for Tyler. Not only are these supposedly easier to handle but Tyler can't spin/roll them like he wants to do with normal crayons. We taped a blank piece of paper to the table (easier to see the colors than a coloring book) and then put out little blocks that matched the colors so we'd h elp him color for a few seconds and then label th block color or crayon color as his reward for coloring since he loves labelling.

Carrie also asked if there is anything we'd like to address this month since this is the last month we have her :( and I said yeah. We really need help getting TYler to stay in one place, again, so we can feel comfortable leaving the house, with one parent, and know we can keep both boys safe. Tyler wanders and we spend all the time away from home chasing him from one place to another which if there were only oen of us, Ben then is left alone, which we can't do so it leaves us unable to reallly go outside our comfort zone unless we have a helper. Carrie is going to help us, yeah! so hopefully by the end of the month Tyler will enjoy coloring and he will also be able to hold still or be able to stay in an area for at least 5 -10 minutes without having to be contained in some way.

Video went ok, Tyler wasn't really big into eating today, in fact he was a little strange last night and it carried over a bit into today. So I wasn' t able to push him too much but he did a very good job of demonstrating his pointer skills and is really enjoying some of the signs now. He likes to watch mommy make some of the signs like ball and he likes it when mommy helps him with hand over hadn signing for things such as gorilla, monkey, and duck. We have the first baby signing time video and plan to get the next 2 sets. Daycare enjoys the videos as well as it helps the other kids learn to communicate with Tyler too. So we are all ready to learn our next set of signs.

We are beginning to do speech twice a week now, YEAH! That will be the schedule for the next 6 weeks anyway. We all really like Lisa and she's doing a great job of incorporating Tyler's study goals with his speech goals.