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Last year was the inaugural SE Michigan walk now for Autism, held at the Detroit Zoo. Although it may seem like an eternity, at this time last year Tyler had not yet been officially diagnosed with autism. In fact, this Sunday, Walk Day, October 12, will mark the 1 year anniversary of Tyler's diagnosis. I cannot think of anything I'd rather be doing on that day than supporting autism speaks and all the other families and children in this battle against autism. You all saw the presentation and the dramatic changes in our son in the past year. I believe the diagnosis was a blessing, without it, Tyler would not be where he is today. He wouldn't have been accepted into the ESI study that helped us build a foundation for learning and training that will stay with me/us for a lifetime. I know it seems hard to believe, but at this time last year I did not know anything about biomedical treatment. Crazy as I feel our life pretty much revolves around it now but until I read Jenny McCarthy's book sometime last fall, we didn't even know what a DAN Doctor was, never heard of them. Wow.. I just had to take a moment to appreciate it all. As Tyler's Angels embarks on a very important journey on a very important day, I'd like to thank all of the angels that have gotten us to where we are. Some of you may not know the order of how everything played out so here it is
6 Months Old - Talk seriously to pediatrician about concerns
9 months old - Pediatrician tests for genetic disorders at Christmas (full 2 weeks to get results)
10 months old - Pediatrician refers us to U of M (behavioral pediatrician)for more testing as well as early on for develompent delay assessment. Pediatrician puts a diagnosis on paper of microcephaly which if you look this up online, it's quite worrisome!
12 Months - Tyler is very small for age, only eating two types of baby food and vomits at sight of bottle. Early on refers us to a speech pathologist. Chris Dowd gets our son to eat, she was a godsend.
15 Months - Tyler is evaluated at U of M and scheduled for MRI, hearing test, and basic neurological tests. We are referred to the University of Michigan Autism and Communication center for their First Words/Toddler Project. Which would provide us with free standardized autism testing as apart of the study.
16 Months - U of M autism and communication center gives us a report at basically said everything we already knew but did not diagnose him one way or the other. MRI and hearing and neurological tests all normal. We are begging someone to tell us where to go to help start to treat our son. We are referred to Early on which we were already doing and the Play Project. The Play Project was gonna cost around $4000 which would be a 1 x per month consultation/training to show us how to work with Tyler.
17 months - Developmental Pediatrician is concerned Tyler hasn't gained any weight in 2 months and asks that we start adding oil, extra milk/formula, etc to his diet. We raise $4000 for Autism Speaks walk. Less than one week after walk and one week before having to pay for the Play Project, we are referred to a new study at U of M which would provide in home training at no cost and they would occur 3 x per week vs 1 time per month! The study was sponsored by Autism Speaks.
18 Months - U of M officially diagnoses Tyler with autism and we get enrolled int he Early Social Interaction study based on the SCERTS model of therapy. This saved us $4000 and opened another door for Tyler. We hear about a book by Jenny McCarthy talking about her son recovering from autism which we did not know what possible. i get the book right away. We find a DAN doctor right away.
19 Months - we start B12 injections and see improvements and are really beginning to believe in the whole idea of biomedical therapy.
21 Months - we see significant progress in Tyler thanks the study. Carrie was truly a blessing in our lives for both Tyler and Ben.
Most of you know the rest of the story as this is about the time I started the blog. But as you can see, one thing lead to another and lead to another and got us to where we are today. Please, everyone that reads this, please cross your fingers and toes and send us all your well wishes that the next year will prove to have just as much of a positive impact on our lives as last year. We truly need all of your positive energy as we embark on new journeys, struggles and triumphs.
On another note, we got good feedback today from the speech pathologist so I thought I'd share...
Tyler did lots of “talking” today. He really liked the cookie jar activity I brought. It is a cookie jar with plastic cookies that have numbers on one side and colored m & ms on the other side to count. He loved the numbers so I had him sign “cookie” each time to get a cookie from me. He did this repeatedly because he wanted them all! He vocalized each time as well. Some of the vocalizations were even an “o” type sound rather than “uh”. He continues to love the feather activity. I now hold up 2 different colored feathers to have him choose one. I will say “do you want blue or green?” He will then vocalize a vowel sound and I give him that colored feather. He is looking at me and looking at the feather he wants and his vowel-vocalizations are sounding differentiated so I can tell he’s trying to say even hard words like “yellow” if it is just the “eh” part. This is neat to do with him.
