My son started occupational therapy when he was 4-year-old for sensory processing disorder (SPD). It was one floor up from where we took him that previous year for parent-child interactive therapy (PCIT). Even though it was only one floor up from where we’d spent weekly appointments learning how to interact with him in a more constructive way, we were about to approach a whole new world and a whole new way of doing things. When the elevator door opened, the first thing I saw was the autism sign. I thought we had the wrong floor. I learned to do a few things differently after that first day of receiving my son’s diagnosis.
1. Labels don’t matter to you, but they matter to me.
There has always been a huge difference between my husband and I when it comes to our son’s special need diagnoses. I am someone who likes to have a name. I need to have a name to what my son has so that I can research it, dissect it and take some control over it. My husband on the other hand, couldn’t care less. It’s not important to him, and he’d rather spend his time “fixing” it than naming it. This could be you and your partner. If it is, identify how you each feel. It’s important to understand where the other person is coming from, even if you disagree.
2. Don’t use the diagnosis as a defining moment but more of a stepping stone.
Use this nugget of knowledge to take you to the next level (therapy, medication if needed, programs, support groups and so on). Now that you have a name for the behavior, use it to your advantage and squeeze the life out of it. It’s not so much about telling people my son has this or my son has that, but it is about seeking professional help so that you can set your child up for success with whatever diagnosis he has been given.
3. Be careful if you decide, how you decide and when you decide to tell your child about the diagnosis.
I was standing at the kitchen sink washing dishes when I decided to tell my son he had attention deficit hyperactive disorder (ADHD). We had been searching for a name for what he had for years. After several misdiagnoses we were confident that this was what he had. I debated whether or not to tell him but decided I would. I looked up from the sink to see him playing at the kitchen table and it was then that I told him he had ADHD. Our conversation lasted for just a few minutes. I kept it short and simple. He was 5 years old at the time and well into kindergarten. We’d been taking him to therapists and doctors for several years on and off, so I knew he was well aware of there being something about him that was slightly different from his siblings. He asked a few questions like I thought he would. I answered them honestly and that was that. If this is the season of life you find yourself in, think about how you want to handle it and go from there.
4. Set your child up for success in every situation and environment as much as possible.
Each diagnosis comes with specific ways on how to manage it. Before my son’s diagnosis of ADHD, I would be quick to discipline him for not listening to me when I would rattle off a list of things for him to do. After his diagnosis, I am more intentional about giving him one task at a time and then telling him to come right back to me so that I can give him his next task. This setup works a million times better than what I was doing before. When you know better, you do better. I learned this technique from doing my own research on the disorder.
5. Be your child’s biggest cheerleader.
Sure, there are going to be days (probably lots of them) when all you want to do is curl up in a ball under the covers. But think about what it’s like for your child. Think about how difficult things must be for him. Put yourself in his shoes when kids don’t want to play with him because they think he’s weird. If you’re not the one standing up for him, who will? Your child has to know that he has at least one person in his corner who will never stop cheering him on. That needs to be you. And he needs to know that no matter what, you will be there supporting him, loving him and helping him as best you can.
6. Set boundaries.
This one will be hard for you to put into place with loved ones and friends. Boundaries are meant to protect those we love and to keep those who have the power to hurt at a far enough distance that we can stop the situation before it ever has the ability to reach us. This might look like you setting a boundary when it comes to play dates. For a very long time, I would not allow my son to play at anyone else’s house if I wasn’t there with him. He could invite friends over to our house, but until I felt comfortable enough that a friend’s parents could confidently watch my son and not get frustrated when he wouldn’t listen or when he was super loud, I just didn’t allow it. That was an unspoken boundary for myself. I didn’t need to tell anyone else that — I only needed to set that boundary for a temporary time in our lives when the diagnosis was new and I wasn’t quite sure how it was all going to play out.
7. Go to therapy.
If you can, I encourage you to get therapy for yourself. Getting a diagnosis for your child can feel like a step in the right direction and it is, but it also comes with some sadness. It comes with allowing yourself to let go of the dreams you may have had for your child and envisioning new dreams, setting new goals and being more realistic about what he can and can’t do. I went to therapy shortly after we received my son’s diagnosis and something my therapist told me really helped me. She told me it was OK to grieve. She told me it was OK to allow myself to be sad and to cry if I needed to. She told me not to feel bad about it and that everything I was feeling was completely normal in the midst of so many abnormal things. Sometimes we just need permission to come undone. Even if it’s only for an hour in your therapist’s office.
Our son has received several other related diagnoses along with ADHD. It has been a long road. It has been really hard on my marriage and the dream I had of being a mom has played out so differently than I could have ever imagined. But I believe that good things can come out of hard places which is why I started a group for moms, “Overwhelmed to In Control.” It’s a safe place to come and talk about whatever it is that you’re facing in your life. It can be about a diagnosis or something completely unrelated to that. We all go through overwhelming times in our lives and this group has become a place where you can ask questions, get support and meet other moms who might be going through a similar situation. Search “Overwhelmed to In Control” on Facebook for more information.