Advocacy: Special Needs Parent's Primary Job

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I am a special needs parent, advocacy is my primary job.

All parents are in the position of caring for and watching out for their kids, but parents of special needs kids have unique duties. Dictionary.com defines the word advocate as follows:

We speak on our child’s behalf.

We run interference between our child and friends, therapists, teachers, schools, and other “professionals” who may know a lot. But they don’t know my son. My child can do some self-advocation. We have taught him how to speak up when he needs to. Maybe yours can’t. Mine couldn’t always, and there are times even now as a high school Junior when he is not able to. This is my primary job as his mother.

Advocacy takes different forms depending on the situation, the age of the child, and the timing.

We had a situation a couple of years back where we had to make a tough decision and close out a friendship for our son based on the fact that we couldn’t entirely trust the parents of a friend to look after his best interests. If someone questions my child’s innocent motives overlayed with adult assumptions, and it will bring out the Momma Bear in me. We make decisions for our kids that are hard but necessary.

Advocacy can also take the form of teaching others about our children.

Kids ask questions. Sometimes lots of them. When a child genuinely wanted to know why D1’s speech is stilted, I told him. When a mother in our co-op asked about his writing ability, I explained what needed to happen so he could be successful. Educating others is part of acting on behalf of our kids. “Why does he talk that way?”, “What’s that thing in his neck?” (example re: child with a tracheostomy tube), “Why does he go to the doctor so much?” Kids will ask those questions because they are genuinely curious or concerned. There is nothing wrong with answering them.

When we advocate for our kids we may be seen as helicopter parents.

Recently, while D1 (15) was just starting in the Beginning Engineering summer program at a local STEM school, I explained to his instructor, “I don’t want to be a helicopter parent, but you need to understand that he needs a lot of structure and help to get through his work.” He laughed and thanked me for being aware of what a helicopter parent is and my desire to not be one. He then helped my son set up an organizational system for flagging incomplete assignments so he could prioritize what needed to be done first, next, etc. We then put the responsibility back on my son’s shoulders.

Successful advocacy is not micromanaging.

I refuse to micromanage any of my kids. I have been there, done that. It doesn’t work and certainly doesn’t teach them how to be responsible! Assistance, structure, and accountability are frameworks we use to keep him moving forward so that he can be successful. If I hadn’t met with his teacher and explained what was needed, he would not have passed the program. He would have floundered without having his needs met simply because he isn’t able to prioritize things.

When the time comes, it is our responsibility to teach our kids to self-advocate.

This is one of the biggest hurdles, because in so doing I am putting off some of my fears and handing him his diagnosis– his struggles– and saying “This is you. You need to speak for yourself and make your needs known.” That was hard, explaining to him that he has Autism, and that it doesn’t mean he is broken or that something is wrong necessarily, but that he thinks and learns and operates differently than other people. It took him a while to accept this fully.

Now he looks at his Autism as a strength. He knows what parts of it help him (hello, Science Brain!) and which ones don’t (disorganization, ADHD, writing struggles), and he is pretty good about speaking up when something is over his head or out of bounds as far as understanding. He is even able to come up with solutions sometimes. He isn’t fully into this yet, but he is improving all the time. Until he’s ready, this is still my job.