This shares my thoughts exactly. As the parent of an Autistic child, you live in a state of “Am I doing this right? Will this screw my kid up forever? Will they hate me for this when they look back as an adult?”
The worse is, “Will this make things worse for them?”
The journey of a parent who has a DD child is a tough one. You look on yourself in a harsh way, because as a parent, all you want to do is make your kid’s life the best it can be. You question everything.
I have finally gotten to a place where I think I can be a better parent to my child. I can offer support, and acceptance. One of my favorite sayings to him is that everyone has things they struggle with. He has his struggles. I have mine. They don’t always go away. We just get better at learning how to handle them.
That, to me, is the difference. There is nothing wrong with me because I am nearly non-functioning when presented with math or logistics beyond the reach of a calculator. I just go through the problem one small step at a time, and digest it that way.
There is nothing wrong with my kid who doesn’t always see the social lines that connect us with others. Or that he doesn’t always understand them.
In helping him navigate a world that is not attuned to how he operates, I’ve learned to say, Does this really matter? In the grand scheme, so what if some social lines get stepped on? Or ignored? Or dismissed?
As long as no one is hurt, no laws are broken, and we respect others – then all is good.
To me, Autism Speaks does none of that. My son doesn’t need to be cured. He does need a little more help in navigating aspects of life – kind of like how I can’t do anything mathematical if you can’t work through it without a calculator. Anything more than that, and I need help.
I just don’t see Autism Speaks as helping in that fashion. I know there are those who have had good interactions with them. I’m glad. I don’t agree with their ideals in how to help my kid grow up and be a happy, healthy, productive adult.
That’s why I don’t support them.
When my daughter was diagnosed, we heard about Autism Speaks. Their message supported everything else we were reading and hearing about autism, so I didn’t spend much time thinking about what they were saying or who they were involved with or even what they were doing with all the money they received. In fact, we gave money to them during those early years. When friends and family asked who they should donate money to, I encouraged them to give to Autism Speaks.
“Autism Speaks has a long and continued pattern of exclusion of Autistic voices from its work on autism. As an organization without a single Autistic person on its board of directors, Autism Speaks is the last group our nation’s leaders should be entrusting with the creation of a “national plan to address autism”. ~ ASAN (Autistic Self Advocacy Network)
“No reasonable person would dare suggest that an organization…
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