The Price of Advocacy

Being a parent is hard. Being a special needs parent is extremely hard.

This is a resounding fact you’ll read about in probably every blog post from us; but we say it often because it’s the truth.

Fighting for Hudson is probably one of the hardest things we’ve had to do… and up until last year, Matt and I thought we were advocating for Hudson, but really we had no idea how to actually be an advocate until push came to shove. And we’ve learned that sometimes being the advocate makes you “the bad guy” in the situation.

Matt has become the best advocate I could ever ask for for Hudson. He’s a deeply passionate person who wants nothing more than the best for his family and those he loves (the man bought me Taylor Swift tickets for Christmas last year, people! That’s love!). He has taken on this immense role almost completely on his own. He went through the grueling process of getting Hudson certified for OPWWD (that alone is a huge thing, IFYKYK), and has also reached out to the University of Rochester for help and training for us as parents. Not only that, but he does doctor appointments and handles all the school emails and calls. He also makes every single IEP meeting.

His working from home helps makes this possible but it also takes a huge chunk of time out of his days. Everything he has taken on could be an entire full time job in itself. Yet he still works his job and has time to help around the house and play with our boys.

I personally struggle with advocating. I’m a people pleaser and I work in the district where Hudson attends school, which often times makes for a very awkward situation as I have to separate my role from educator to parent.

However, being an advocate has come at a price for Matt. When you fight for your child it is not always done in a friendly format and it can paint you as a villain. Unfortunately, sometimes you have to get nasty to get things done. We have never wanted it to get to that point, but sadly it has at times and people have been hurt in the process.

What I wish everyone knew is how hard my husband works to be the advocate he is. He is not a bad person, but an incredibly passionate parent who wants nothing more than to see their child succeed. We have received so much more help in the last year. We now have parent training and an actual autism advocate working with us, and a pediatric psychologist. Before that, we had nothing other than us relying solely on the school for help. Matt’s passion to help his family is inspiring and although he may come off harsh, he has nothing but the best intentions for Hudson.

I am proud to be married to someone like Matt. Perceived bad guy or not, I could never make it through this autism journey without him.