By Jennifer Linde
The Mom of No
First, a warning. The Mom of No is about to become The Mom of Making a Political Blog Post. If this troubles you, avert your eyes and read no further.
April is Autism Awareness Month, and April 2 was Autism Awareness Day. This post is actually derived from a post I made on my personal Facebook wall, but people wanted to share it, and I am the Mom of Extreme Security Settings, so I am adapting it here. If you know me, you know that my posts related to autism awareness tend to be outliers. This one won’t be any different.
Several months ago, I was talking to someone about The Son of Never Stop’s Eating’s life planning, and she advised me to get a diagnosis of intellectual disability (ID) added to his diagnoses of autism and speech impairment.
The reason is that a diagnosis of autism itself is evidently not good enough to guarantee access to services as an adult. The ID isn’t either, but combined, you have a better chance. I took this advice. Long story short, the school diagnostician agreed to test him, and lo and behold, I have the ID diagnosis.
Think about that for a moment. I need not one, not two, but three different disability labels to give my adolescent a chance to qualify for adult services.
The Dad of No and I have spent substantial time and resources doing our best to ensure that our son will be secure for the rest of his life, but unfortunately, even as a middle class family, we lack the means to completely meet his needs. Therefore, he will be dependent, to some extent, on the “safety net” of government funded services.
I don’t do blue ribbons, or puzzle pieces. I long ago reached the point where I don’t think awareness is enough. Even my state representative is aware — or claims to be — but my son and many others still far enough down on the poorly funded waiver wait lists that he won’t get to the top until he’s in his mid–20s. He was placed on the lists in 2009.
What adult services there are for people with autism or ID or both often have long wait lists, or they are private pay. Imagine paying private college tuition out of pocket not just for four years, but for the rest of your child’s life. Being the parent of someone on the autism spectrum can be exhausting. Every day is a fight– for school, for therapies, for caregiver respite, for recreational opportunities, even, for many families, access to a community of faith that will accept them. The struggles don’t end when the child turns 18.
Once a special needs child exits from the public school system, the challenges continue.
I have come to the conclusion that as long as we are talking about cute little kids, people want to help, at least superficially. When we are talking about adults, people who will require the use of the societal safety net we seem to be willfully dismantling thread by thread, we care enough to give awareness our lip service but we don’t care enough to put any skin in the game by committing actual resources to ensure that other people can have their basic needs met.
I’ll be clear about this: assisting people with developmental disabilities is not a federal priority. It is not a state priority. It is not an American priority. I live in a state and in a country where my son needs three disability labels to increase his chances of having access to the services he needs to live life in the community. This is a country in which people are appalled when a child with a disability has no one show up to a birthday party, but they are absolutely fine with their elected officials cutting services for that child or adult to the bone.
Read more memoirs and musings from The Mom of No at themomofno.blogspot.com.