You Are It.

Have you ever watched those people who chain themselves to a tree, or glue their hands to the pavement when they believe in something? I used to laugh at those people. Now I am one of them (or I should say my wife is one of them and I am along for the ride).

 

One of the early lessons we learned in the journey of parenting kids with autism is that your children’s future is in your hands. 

 

The social workers will guide you, the school system will help you with placement, and the therapists will show you how to care for them, but YOU are where the buck stops. This was why I have always talked about being alone in this because your responsibilities are tenfold.

 

In a normal scenario, your children attend school, participate in sports, get a job, and their trajectory is highly influenced by themselves and their work ethic. How does a child who cannot speak, communicate, or understand the system ever make those jumps? 

 

Quite frankly, they don’t. 

 

My wife and I have seen this time and time again, children with special needs are often left behind by the system. We have been contacted numerous times by friends and other families that just “need to talk” and “don’t know where to start”. 

 

You are the only one who is going to advocate for your children at the level you want. 

 

This is why I have always found it so critical to move through the “denial” stage as quickly as possible in the best interest of your children. The longer you fight against the system, the longer the system will fight against your child. This is not something I came up with, I learned this through my wife and her experience being a teacher in the special needs system. 

 

As a parent, how you prepare, how you do things within the system, and how you document things are the most important factors of success. And even then, we have had to fight and have had losses within education.

 

We have binders and binders of information above our desk area in the main living room. I am pretty sure if I looked hard enough you would see our initial diagnosis sheets. This is where you should start taking notes. The lesson of the day is to keep everything, document everything, test everything, and use all services even if you don’t believe they will benefit you. 

 

It’s a crappy, but the worse your child looks on paper, the better the services and education they will receive in the system. Even if it comes to money and grants available. The more work you do on documenting your children’s shortfalls, the more money is available for their education, therapies, and home care.

 

I can honestly say that 50% of the tests we have put our boys through were not required or were just downright useless. I can remember one where they wanted Trystan to sit at a desk and build things with blocks. I honestly laughed from behind the two-way glass because I knew how this was going to go. After five seconds, he threw the blocks, pushed the therapist away, got up and started running around the room. At the time I couldn’t even get him to cuddle with me for more than five seconds at a time, and the professional thought he would sit and do the task. This was a clear indication of getting a written report for the school system from a test that was never going to work. Welcome to our lives.

 

Why is advocating important when it comes to your children? Won’t the school system, the medical system, or every other system just place them in the best place possible? 

 

I love our country, but in terms of medicine and education, at times we might as well be third-world. Our boys have been constantly moved through the school’s system to different types of classrooms based on what the “professionals” thought was right. 

 

Ashton’s first school thought he could integrate with the normal children in a classroom. He spent six months walking the halls with an EA before we got him moved to somewhere that cared. This is why advocating is important, your children will get lost in the system.

 

Medically we have more doctors than I can even name. Pediatrician, neurologist, gastro-something, and the list goes on and on. The reason for this is that my wife does not take the word “no” lightly. This probably saved our oldest child numerous times in the hospital. I remember them trying to discharge us, and Amy standing in the room and saying we weren’t leaving. This inadvertently probably saved Ashton’s life as he had scurvy at the time and the doctors didn’t figure it out. Again, you are the only advocate they have.

 

Whether it be through keeping documents, or unlimited tests, we always say nothing is too small. 

 

Every report we get from one agency, or another gets forwarded to every person that is around our boys and gets documented everywhere. That way, when people who have the power to make decisions, get together to discuss our children, they have seen the reports and know the boys. It also helps that Amy makes a point of networking with every person in power in the school system possible. She is a bulldog (please never tell her I called her this).