26-3-2009 - Hunters ASD Diagnosis

My mood while writing this blog: Ok

Tx for reading my blog ~ I often have moms and dads ask me how I was able to get Hunter DX's so early. I am always open to sharing our story :) If I can help someone out there facing the same struggles that I did than it was all worth it.

Hunter is my 3rd and I've been doing childcare with infants and tots for 13 years. So at 4.5 months I new something was wrong when he couldnt open his mouth well enough to eat solids. I tried for 2 months and it didnt change. Feeding was hard. My MIL who has many grandkids was also struggling and feeling something wasnt right. After 2 months he should have been able to anticipate food coming, gum what was there and open when he was about to eat. Instead I often just touched his lip to facilitate to open or he sucked it like a straw never really opening. We had ruled out him disliking the taste or not being hungry so we knew it wasnt that. It got very frustrating. Food would often just sit there sometimes for half hour so at his 6 months check I mentioned it to his doc and he immediately said call Early Intervention and get an evaluation. I thought I'd give it one more month and that is when I began caring for two other infants (not at same times, lol) and I was then aware of how hard it was for them, they were 2 months behind him and they were doing so much more then him. I called EI and they came and evaluated him. They found there was more then I had known. He was having struggles like oral dyspraxia. He was also delayed in fine and gross motor skills 33 plus %. They set him up for PT and speech at our home and as the time progressed to the present time his concerns became very evident. Cognitive he was always fine but he remained 25 % plus delayed. Still cant self feed very well at times and struggles with motor planning, sensory integration, speech and communication. To drink a bottle even now he has to lay almost fully reclined onfloor to holdit, he cant lift his arms up high enough and long enough to lift the bottle to drink it. Blank stares, eye contact not there at times, not coming to us or looking at us when we called his name etc. (Doesnt happen always but kids with ASD have times where they appear "normal" and other times they dont.) Even now he still has yet to bring me a toy or book he wants me to engage with him on. He is ASD but very mild. Often he is fine, other times not so fine. All therapists and docs have said that having caught it very early helped him so much.

Many dont even start seeing a problem til after 2-3 years old but we saw it early. Early signs can be misunderstood as normal delays or toddler behaviors and it will vary day to day. The symptoms dont occur all the time. Which can be confusing. Took me just knowing my son and a good doc who knew what was right and wrong. Because of the early intervention he has had enough for them to watch him grow and develop to be able to diagnose him, many dont even know til this age or later there is a concern. Or a parent thought something was off but the doc just brushed it off as a normal delay. Had we just started with docs the DX may not have occured yet. The developmental ped who gave him the ASD dx had enough documented date from 7 plus months to go by, plus 3 therapists. :)

My advice to any parent now that thinks there is something not quite right is to get an evaluation from the county Early intervention, maybe it will be nothing ~ wouldnt that be great ~ but would if there is a problem and they didnt go. Worth just to rule it out :) If you speak to your doc and you just dont agree with it being a normal delay, DONT let it go there, push to get a 2nd opinion from EI. A parent knows their child SO much better then any amazing doc since you are with them 24/7. It wasnt that long ago when only classic autism was recognized making it hard to diagnose ASD's and all levels on the spectrum. So not everyone is up to speed on it. I am reading two books now. Autism Spectrum Disorders by Chantal Sicile-Kira and The Out of Sync Child ~ they really are amazing. (()) No 2 kids with ASD are alike. If you've met one child with autism you've met ONE child with it. So best to never compare your child to another child with it to see if the puzzle fits ~ :) (()) hugs ~