Teenage Years and Special Needs

If you are a parent of a child with a disability, likely you know how long and hard this road can be. Add teenage years into it. . . And it can be a nightmare. Be it trying to find the right doctors, getting schools to listen to you, treatments, medications, behaviors, illness. . . It’s a lot. And my family has gone through our fair share of all of this.

So many times over the years, I have had parents of older disabled children tell me that it will get better. Our son will pull out of the behaviors that have been rampant for years. We will be able to find solutions to medical problems. He will be able to eventually live on his own and support himself.

I’ve held on tightly to this flicker of hope. Because sometimes, it was all I had left.

But I never really believed it would actually happen. And sometimes I hated those parents just a little because I was so jealous. They were where where I desperately wanted to be.

I’d become so worn down and worn out. My hopes were dashed SO many times. No more than clinging to that little shimmer of hope was all my psyche could handle.

Our son’s sleeping issues (he has a non-specified sleeping disorder where he may sleep up to 20 hours a day) became exceptionally bad over this past summer. He was sleeping all but a couple hours a day, every day. Behaviors were off the charts when he was awake. In August we started year 4 of refusal to do any school work. It’s also his first year of High School. We were having IEP meetings every few weeks to try to find some way to fix things, with no improvement. He’s in his teenage years, and we couldn’t make him do anything.

I had little left to cling to.

I decided that we had to try stimulant medications again. We had tried everything for his sleep disorder but stimulant medication. I had hesitated to try stimulants for his sleep disorder as we had tried them when he was very young for his ADHD and they tended to make him violent or have strange or rare side affects. We had to do something. He couldn’t sleep through the rest of his life.

Because he has a sensitivity to a lot of psychiatric medications, his doctor recommended getting genetic testing done to see which medications would be better suited for his genetic makeup rather than just going at it blind. I wish this had been around years before. It could have saved us a lot of headaches.

We started seeing immediate improvement after we started the stimulant. He was able to stay awake longer and he was way less impulsive and better able to have control over himself. We did have to change to a long acting version to keep him awake longer and make sure that we gave it to him first thing when he woke up or he will sleep through his first class.

This change also reminded me just how real ADHD is.

For those who truly have it, it can be very difficult to manage. In some cases you can manage without medication. But for us, that has never been the case.

For the first time in YEARS, he is staying awake all during class. He is participating, getting his work done, and coming home and asking to do his homework. (Seriously, who is this kid?!!!) Every day he comes home with a list of chores he wants to do that day so he can have some screen time. We haven’t had any major or small meltdowns as long as he gets all his medications and he is much more willing to discuss and understand when we have to tell him no.

Our home is peaceful and happy, and I am scared to death that this is going to end, because it hasn’t been this good since he was about one or two.

I’m writing this to tell you, don’t give up, especially during the hard teenage years.

I can’t tell you how many times I wanted to.

Or how many times I felt like I couldn’t keep going on forever like this.

I’m joining those Mom’s who said, don’t give up. Things will get better. They may not stay that way forever. And you can hate me just a little too.

Teenage years usually turn everything on it’s head one way or another due to hormones and it can be a real crap shoot.

I’m giving whole-hearted thanks to God, that after so many years, we have finally found a mixture of things that work for our son and work for us. It isn’t perfect. We still have issues we are working on, but they are SO much better. And I’m praying that you too will be able to find the answers and help you need to allow you to keep stepping forward as a parent of a child that is valued and needed no matter what society tells us.