I wrote this a few years back, but I feel it still captures my sentiments towards Autism Awareness Day.
Today we celebrate an important day in my household, my daughter’s birthday. It is also World Autism Awareness Day or as we call it in my home, today. Allow me to ramble a little on the topic.
I have written a great deal about RDSPs (Registered Disability Savings Plans) and how key they are for parents of children with Autism, to help plan for their child’s future, and in there I have also written a few snippets about the life of a Parent with a child on the Autism Spectrum, but let me touch on a few more things to maybe help some folks have a better understanding of the challenges, for parents of kids on the spectrum (enhancing your autism awareness day).
I wrote a while ago about Giving Advice to parents of kids on the spectrum, and while that article was a little raw, it does sum up some of the problems Parents have (and I’d like to point out not just for parents of kids with Autism, parents of kids with disabilities (visible or not) and some parents, in general, have the same issues). I try to offer advice to parents I speak with, only if asked, but I must admit that sometimes I feel the need to share my “wisdom” on the subject a bit too much (so the finger points at me as well). All parents are trying as hard as they can, just try to support them, and you are helping.
Rhys is our last child, and I think that was a good thing, in that, we learned a great deal from our 3 daughters in terms of parenting skills, and a fair amount has been transferable to Rhys. All three girls were “gifted” in different ways, so we learned a great deal about how to deal with the educational system, and the problems getting smart kids a good education in the public system (also from my late Mother-in-Law who was in charge of the Learning Disabilities Association of Halton, and from my parents, as my eldest brother has disabilities as well).
From these experiences, and after talking to the local public schools, we decided to take on the extra financial burden of putting Rhys in a private school, because Rhys is unique in that he is very high functioning and thus doesn’t really fit into the “Classic” autism programs, but nor does he fit into the regular school programs. I wrote about getting Rhys’ school fees as a medical expense, so we get a little help, but Mrs. C8j went back to work mostly to help out in this area as well (no one is complaining here, just explaining).
Keep in mind that marriages that have children on the spectrum have a higher risk of divorce (but I suspect this is also true for parents of kids with all disabilities), and at times there is stress in all relationships, but I think Mrs. C8j and I are doing fine in that aspect (another fun fact for Autism Awareness Day).
Do I want my son “cured”? I am really not sure what “cured” would mean? He is an amazingly complex boy, with an ability to surprise you constantly, what am I curing him of?
- Do I wish he could deal with social interactions better? Yes, but I was an incredibly awkward kid socially, it is just that I was ludicrously extraverted (and obnoxious). Rhys is learning slowly about social interactions, I don’t know where this will lead.
- Would I love to see him be able to go to “regular” school? Maybe, I don’t really know, “regular” school never did me any big favours, it was only when I went to University that I started to realize my own gifts.
- Is the world a better place with my son in it? Absolutely, Yes
So why would I want him “cured”? Please remember we are lucky that Rhys is high functioning, in that he talks, and walks and if you saw him you really wouldn’t notice anything (except that he is only 10 but the size of a 14-year-old, but I suspect that is genetics). I have friends and have met folks who have children with Severe Autism, and I think they would give anything to have a child-like Rhys, and their definition of “cured” is different from mine.
My Conclusions
In my life, I have been blessed with many things, and my children are my biggest blessing (and my wife, family and friends as well).
Yeah, what about what autistic people want? When caregivers want to cure those of us with a lot of support needs, what they really want is to be “cured” of having to take care of us all the time.
Functioning labels do so much harm, it says some of us are useful to society and throws the ones deemed “useless” away as hopeless. Autistic people with a lot of support needs are not less worthy of respect than independent autistic people.
Saying our parents would want to cure us because we can’t talk or look neurotypical is damaging to all autistic people.
Also, Autism Speaks is a really bad charity. They look good because they’re well known, but they don’t speak for autistic people and the way they use more money on research and marketing and salaries instead of buying iPads and communication devices and respite care for autistic people who need them now says a lot about how little they care about the autistic community or what it wants.
If you seriously want to help autistic people, talk to autistic people!!!
Agreed. We need to talk to those on the Spectrum. I try to talk to my son every day, sometimes he tells me things that I smack my head for not realizing how I was upsetting him. If you don’t listen to those on the spectrum, you will never understand them.
Wonderful post. Similar situation but ~5 years behind. Get lots of value from your wisdom on this topic – thank you for being so generous with it.
RH