One of the major decisions we had to make when the boys were little was to decide just how much credence and involvement we were going to allow social workers and government authority. The following are two interesting incidences that basically helped us make up our minds:
We had, on the recommendation of our school disability director, contacted the county disability office to find after school activities for Mr.GS (he was 5 years-old at the time). After having chosen a sports class for children with ADHD, I called the local county department to have him registered. They put me through to the county social worker who ran the course. Interestingly the first question out of her mouth was whether Mr. GS had pdd-nos. I told her yes he did. Her response was, "You parents think that by putting your children in a class with normal kids, your kid will be fine. Well they won't." Then she hung up on me. She didn't ask his functioning level. She didn't ask his IQ. She made an ignorant decision based upon some knowledge that she thought she had about autism.
I did call the disability director back and told him what happened. He recommended a different class that was geared towards children with autism. I signed Mr. GS up. It was a lovely program with arts and crafts and swimming, at the local community college. He did have a nice time. One Saturday when we went to pick him up the support staff was all-a-twitter. Apparently there had been a little boy who was very upset and was crying. Mr. GS had spent several minutes trying to comfort the other boy by patting his back and telling him "OK" "OK." I reminded them that I had told them that my son was a very empathetic child and that he felt other people's emotions. Obviously they didn't believe me, and just chalked up my knowledge of my son as "wishful thinking parent."
It was after these two incidents, early on in Mr. GS' development, that we came to the decision that we were absolutely never ever going to put our children into the hands of the government. We would find a way to get our boys the help they needed without government interference. The government in general was never going to have a say in our children's future ever. We didn't trust them with our children's health records and information. (A little ironic now in the age of Obamacare.)
On the other hand, we did, upon recommendation of the disability office in our district, look into state government supports for adults with autism when MR.GS went to college. (Apparently there had been a support program that was being developed for college-bound aspergeans.) But the state wanted all his health information (of course) and the entire process was extraordinarily antediluvian. Hence, we kept to our original decision to stay as far away from government as possible. Plus it's more about confidentiality and whether the state, or a "well-connected" employer, could use this private information against the boys at some time in the future. No we do not trust that our government has our best interests at heart. Perhaps those in government should think about the fact that the people they are hired to serve, do not trust them. (One only has to look at the IRS scandal to know that there can be dishonest and immoral people in powerful positions and that they can use that power to hurt the average person.)
Yes, we used government sponsored Early Intervention for CM2 (unfortunately by the time anyone had diagnosed Mr. GS he was 5 and too old for early intervention). Luckily our county contracts out to service providers and we always asked the local school district about anyone that was sent before we allowed them to work with our son. In fact when CM2 transitioned from Early Intervention into School District control we did keep the same service providers that the government had sent until he went to kindergarten. They were exceptional at what they did and had a really nice relationship with him. In fact these service providers called for years to check up on CM2 and see how he was doing.
Of course we used the local school district for their education. We were very lucky though that those in our school district viewed disabilities and their job as teachers in the same way as we did. That their job is to help the child learn to deal with their disability while at the same time allowing the child to be the best that they can be. No preconceived notions of functioning. No preconceived notions of what and who the child will be based upon their disability. They created an educational plan based upon who the boys were as human beings.
In the end, however, we never allowed a state or county government social worker or psychiatrist or anyone else associated with the government near our children after that first year when Mr. GS was diagnosed. In fact we have actually fired all manner of private service providers too, who decided to view our children as their disability first before they were seen as people with the right to chose their own future. Yes, this attitude is an across the board problem, but at least when you deal privately with someone you have control over who works or doesn't with your child. You need to remember that your rights as a parent are greatly restricted when the government has the final say-so about your child's care, not to mention your absolute lack of authority vis-a-vis the government once your child becomes an adult. So think very carefully just how much help you really need in raising your child and whether you can support your child on your own. For many parents there is no choice. Their children need more than they can give them and these parents need help and support. But for those of us who are lucky enough to have children with high functioning forms of autism, think clearly and carefully who you want to let into your home.
Now, one of the most insidious avenues that government or those in the psychiatric/social worker community do to our children is to use language that dehumanizes them and infantilizes them. Read a father, Mark Neary's, take on the jargon used by the NHS in England to describe his autistic son. HERE
He writes: One manager explained to me once that everything learning disabled people do must have a value
- not too bad until you realize that someone else is setting the value
and its parameters are very narrow. Who on high decreed that everything
we do must have some value?
Even though we live in the USA, I recognize so much of the jargon in this article. I can say that there were many times that I have used some of these terms to describe things the boys have done, and that these terms were in their IEP as well. Yes, we need to find a way to measure our children's accomplishments. It is the only way we know if they are progressing and learning and developing. But the question then becomes: what words do we use to measure the development of a typically developing child and why can't we use the same language for those with disabilities?
As example: I am wondering if there is not a better way to talk about simple things like transitioning without taking from our children their humanity? I know that when I use such a term it is to describe ways to help the boys accomplish their goal of "transitioning" without meltdowns and anxiety. But does the word itself bring along a connotation of deficit? I know educators discuss transitioning in general for all children. Yet do educators talk about transitioning in the same way for our children as they do for non-special-needs children? What are the underlying themes when our children are discussed? Perhaps its not even the words that are used but the attitude that the Neary's receive(d), or we receive(d), from those who have decided that they know better what our children need then we do.
Reading this article I couldn't help but feel for this father and his son. Those who have power over his child's day-today life seemingly have no respect for this youngman's humanity. It is beyond frustrating. The father's anger is real and so is his despair. When the government has total control over your offspring and their future what as a parent can you do? I think that is something we in the USA had better start thinking about, and thinking about quickly, as our healthcare comes under more and more government control.
Other posts on this similar subject:
Infantilization and School Supports
Destructiveness of Entitlements
A Rose By Any Other Name: The Right to Define Oneself
Apologizing for Accepting Your Child?
The Hero's Journey: Autism and Your Child