Friday, June 11, 2010


I think sometimes the autism community - parents and caregivers of autism - can become so internally focused on their own struggles that they can miss the far worse struggles of others.

Autism is an expensive disability, yet it is the only disability in many jurisdictions where so much financial support is provided.  Without a child having the "autism" label, much of the same supports, such as physiotherapy (or physical therapy), occupational therapy and speech/language therapy are harder to obtain.  Perhaps some of this is due to the cost of ABA which is targeted at children with autism.  However, I say that people with intellectual disability would also benefit from ABA.

This is polydactyly - an extra digit on the hand.  It is apparently common in children with trisomy 13, or Patau's Syndrome.  Some dear friends of ours have discovered their child yet to be born has this syndrome.  She will not likely live more than a few days.  How devastating for them - I cannot even imagine the grief they are feeling and have yet to feel.  I don't think it will even come close to the feeling I had in the pit of my stomach when I knew Alanna had autism.  It is like comparing a bee sting to heart failure. 

So the next time you despair over your loved one with autism, remember they are living with you and remember the hope that keeps you going - and then remember the people who have none.  It will ground you a little.

1 comment: