Tuesday, December 18, 2012

We just received a diagnosis for our son Noah

This is my first entry.  I am starting this blog for a few reasons.... to help me process my feelings related to this journey. To document my son's progress and recovery. To meet others that are going through this situation as well.

My 19 month old son Noah was diagnosed with autism spectrum disorder on December 11th, 2012. We have been concerned for quite some time. Last week the doctor confirmed our worst fear. Looking back, I had a gut feeling something wasn't quite right. As time went on I could see the differences between him and other children his age. His cousin, who is two months older, was always very interactive/social. When they spent time together I could see a huge difference in their behaviors. I tried to dismiss my feelings- telling myself that Noah had his own personality and quirks.

Here are some of the behaviors we noticed early on:

9-12 months- lack of eye contact. more interest in objects than people. loved spinning items. closing/opening doors. started daydreaming a lot/"zoning out". paid a lot of attention to details on toys (textures, specific parts). would often stare at lights, fans. shaking his head left to right (like he was saying no)-he would do this at bedtime but we were assured that this was normal.

When Noah was 15 months old,  my mother happened to mention that she was concerned that he wasn't making eye contact with her and that this wasn't normal for a child this age. I immediately went online to do a search on google- up popped all of this information on autism. He had many of the red flag symptoms...

We immediately went to the pediatrician who made a referral to a developmental pediatrician. We were put on a 4 month waiting list and then referred to the early intervention program. He has been receiving one hour of occupational therapy since that time.

Some of the behaviors we see now at 19 months:

eye contact is sporadic
doesn't respond to his name often
stimming behaviors: shaking his head left to right, pacing, hand flapping when excited, spinning wheels, walking on toes from time to time
high anxiety around other children/social groups
does not point or wave
food aversions
delayed speech- says a few words but not purposeful words (doesn't say mama or dada or baba)
zones out

So what is next??? I am trying desperately to get him additional therapy and services. I thought it would be easier now with a diagnosis but I was dead wrong. I am running into brick walls. Waiting lists for 4 to 6 months. Financial limits, no insurance coverage for ABA. No parental training while we wait.

It is just so frustrating---- It is hard enough to receive this diagnosis, and it is made even worse when you can't get him the help he needs. I have purchased books, videos and will educate myself and family until I find training and help. I will keep calling and seeking help. I will keep trying for him. I don't have another choice.

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