Why do parents of special needs children need to advocate for them? Because we have to. If we don’t, who will? There are those who will help, but nobody understands your child more than you. I see it as my moral responsibility to advocate for my own special needs child when something is wrong. When something doesn’t add up. To say his battle has been long and tough would be an understatement. When the pieces of the puzzle don’t fit neatly together at a school, a church, an extracurricular activity, or anything your child does, you have to look at the whole picture. If those pieces don’t fit or some are missing, get loud. Expose and find out the truth. Because even if you may not get what you wanted for your own child, it could help another child down the road.
I see special needs parents go ballistic when a restaurant or some type of amusement activity discriminates against disabled children. But I don’t see this with a lot of schools or churches. Why? Our child has just as much right to be some place as someone else. If you tell me you don’t want my child somewhere, you better have a damn good reason for it. As well, you better know damn well what you are talking about and be able to back up that talk with cold hard facts. If it is a place that has already given certain promises or expectations, and those suddenly shift, you have every right to find out why AND go public about it.
If you feel your child has been treated harshly without some form of due process or a valid reason, you need to call them out on it. If the institution has not done what they said they would do, you have EVERY RIGHT TO ADVOCATE FOR YOUR CHILD. People hate to get named or called out. They get scared. They don’t like seeing their name in public. Why? Because that could tarnish what they believe is their good reputation. If, after you have reached that point of no return, name them. Expose them. Let others know the grass isn’t that green. Because if you don’t, you are saying it is okay. You are saying it is okay for someone to discriminate against special needs children. You are saying it is okay for other children to not be given a sense of justice and fair treatment.
I always ask these basic question when it comes to special education. Would an adult tell a child who is blind that they need to see? Would they tell a child in a wheelchair they need to walk? Would they tell a deaf child to listen up? Of course not. So why would they tell our children with the disabilities they have, when those disabilities are medically documented facts, that they cannot provide for your child when they already agreed to it? It is their responsibility to understand that disability. When a parent provides documentation for their child to a school, it is incumbent on the school to actually read and understand that information. A “cursory glance” is not acceptable and it should not be tolerated. If you notice your child is having escalating behavior issues when they weren’t in the past, is that the fault of the student with disabilities if the school has not bothered to accommodate the child? I would challenge any school that has not done its due diligence for that unique child to say they did. Special education is NOT a one size fits all. And if you are a private school with a program designed exclusively for students with disabilities, then you cannot deny a child services when you have done nothing to understand that disability.
Parents have to fight for their child. It is their legal right.
Jon’s loving father,
First thanks for creating this blog. I typically do not partake in blogging for a variety of reasons, but since this one is focused on my primary area of advocacy have decided to join in when appropriate.
Since I am posting, I need to state that I am posting as an individual volunteer advocate and parent of a child with a complex disability, and that am not posting as a member, officer or any other capacity or are my comments officially representing the position of any of the multitude of advocacy organizations at the local, state and national levels that I volunteer for.
It was great to read Kathy’s story, and in many aspects mirrors my own.
It does bring up a question as to why all the special education advocates in Delaware to a significant extent work in silos. Yes we may not agree on every item of every issue, but we do agree that our children’s needs are not being met, and that the long term lost opportunity and damage to chidren because of this can to be allowed to continue.
So I will ask, who wants to get together this summer in a SPED advocates summit?