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Asperger’s assessment: day one

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Today was a long day.  We went into Langley to see the PED’s specialist, Dr. Bamber for the first part of Trace’s Asperger’s assessment, which was just tons of fun.

Trace was in rare form, bored out of his tree and making us all aware of it as the doctor asked him what kinds of things he liked doing in school.  He told her video games, the DSi and the iPhone and his Hot Wheels were among his favorite things to play with.  He told her he got bored in school and was bored to be in her office – LOL

He was very honest.

Then she asked me some questions about his birth.  I explained to her how when Trace was born, he sat lodged in my uterus for 20 minutes without oxygen and was born not breathing because the hospital didn’t want to breach protocol, by popping my water without the doctor present.

I told her how Trace had to be intubated, in order to get him breathing.  How he was born Group B Strep positive and not treated, to which she replied (OH we don’t usually treat babies for Strep-B if they are born healthy) and I held my breath, cringing so I wouldn’t become a foul mouthed trucker to her lackadaisical reply to this mishap.

Funny how my oldest was born with Group B Strep but was treated and had no health issues really, but then the child I had not treated (although they knew) and still did nothing, has had nothing but problems.

Early-onset GBS infection

If a baby develops GBS infection less than seven days after birth, it’s known as early-onset GBS infection. Most babies who become infected develop symptoms within 12 hours of birth. Symptoms include:

  • being floppy and unresponsive
  • not feeding well
  • grunting
  • high or low temperature
  • fast or slow heart rates
  • fast or slow breathing rates
  • irritability

Trace got the infection which was not treated, which all women know can lead to serious health issues, including Cerebral Palsy which Trace was born with. That’s what led us to move from Kelowna to Abbotsford in the first place, to get him the care he needed at Children’s and find out why he was so unresponsive and small and not thriving.  It took us a long time before discovering that was what was wrong. Child Development always hinted at Asperger’s and on the waiting list we went.  Until now…

Tomorrow Trace goes for his first appointment with the Autism specialist. I am going to try to be calm. I’m very emotional right now. Whether Trace gets a diagnosis or not, it won’t change anything. Not how I feel about him. It will just give me some closure I think, and perhaps aid me in helping my son more.

I am going to try to be positive. I am going to try not to get angry. It’s hard though, having to explain everything all over again, and yes I am bitter, still at our mis-treatment at the hospital my son was born in, and other doctors who just didn’t care enough to do anything to help us. Getting angry solves nothing I know.  And I am my son’s only advocate. So I need to be calm and remind myself. This is for Trace.

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5 Comments

  • Reply Julie

    While my kiddo has cerebral palsy not autism, the long days at the doctors office waiting for answers can be emotionally draining for all. Strength to you as you go through the "what now" meetings.

    May 7, 2012 at 1:09 pm
  • Reply Tarasview

    the days of assessments are so hard Jodi- I remember them well. For us it was a relief to get my son's Autism diagnosis because it finally got us access to the services we needed- I hope it will be the same for you in time.

    It is such an emotionally exhausting experience to go through – hoping it goes smoothly for you all.

    *hugs*

    May 5, 2012 at 9:44 am
    • Reply Jodi Shaw

      Thanks Tara, we do too I just want it over with, so many thoughts enter your mind as you go through it 🙂

      May 6, 2012 at 11:29 am
  • Reply Jen

    5 years is a long time to go without the proper diagnosis. I bet on one hand you must be relieved to have this official and know for certain what is going on and then on the other hand a fear that he doesn't get a diagnosis and being back at square one. Hugs to you I know it's not easy but you can do this!

    May 5, 2012 at 7:49 am
    • Reply Jodi Shaw

      Thanks babe, I know you understand more than anyone <<<<< hugs >>>>

      May 6, 2012 at 11:29 am

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