Tuesday, February 17, 2015

Autism... Funny how strange this word sounds, even though we have known all along.

My poor oldest child has had struggles since the day he was born.  My water broke at 30 weeks, I was on bed rest in hospital until 34 weeks, where labor was induced because water levels were too low to let him stay put any longer.

He spent a little less than 2 weeks in NICU and then my tiny little bundle of joy came home.This crazy little monkey was an all or nothing kid from day one.  There were so many days when I swear he was in control and not us.

He was always crying, had trouble eating and feeding, constantly sick with chest infections, and would never let mommy put him down.

When he turned 15 months old, I took him to the Stollery emergency finally sick of all the chronic chest infections.  And that is where our life changed.  For the first time since he was born, a doctor listened, referred him to a specialist pediatrician and within a short 3 months it was discovered my son suffered from dysphagia and had to be completely taken off solid foods for the next year and a half.

Feeding was never the same again.

With the pediatrician referral also came referrals to OT and SLP.  We had weekly visits from Behavioural Interventionists as we tried to figure out the cause of our child's difficulties. 

Referrals were in place for further testing and....

We moved.  New  province, new city and so many many more problems.

Our son was referred for support shortly after we moved and we have lived the emotional roller coaster that is the provincial health system since.

Our family was told my son had CDBC (basically FASD, but they could not attribute the issue to drugs or alcohol). They said he was too social, knowledgable of social norms and behaviours and could look them in the eye during the assessment.  I have been told that the social components of Asperger's are usually not easily identifiable until children are older, espeically in children with high IQs.  This is because the child can use scripted or memorized phrases to express their needs and adults in general can infer what the child is trying to say.  As a child ages, the scripted phrases are more difficult and usually are not reflective of the child's age making the disfunction that much more obvious.  That being said, if you do the research FASD can be even more complicated than ASD. The only problem is there is no funding or supports for children with FASD after the age of 6. I should know my son was diagnosed at age 6 and we have been on our own pretty much since the date of his diagnosis.

We have had 6 years of advocating and then finally the public service health care plan increased the coverage for psychological services to $2000.  We took a risk and had our son reassessed.  This time he was 11, and his social deficiencies were glaringly obvious. The psychologist told us in the closing meeting that he could not react to common signs of disinterest or ignoring him, did not know what a friend was, could not carry on a back and forth conversation and although he could still use appropriate scripted phrases for descriptions of social settings, when pressed further it was determined that he did not know what they meant. 

Let me just tell you, my son is diagnosed ASD now.

Where do we go from here.. Honestly I do not know.  I just know that the next battle is on the horizon and this time it appears we will be armed with some funding and supports to help us through.