This means once again answering a slew of questions about our home life, and my wife’s pregnancy, and my son’s development, questions which got me thinking about how, from the beginning, we had a sense that Felix was different from other kids in ways both wonderful and challenging. Then I began to wonder: after five years of staying home with my son, what have I learned about dealing with a kid who has special needs? Am I better equipped and prepared to handle his tantrums and outbursts now then I was years ago?
I think so, yes. Because not only have I learned about my son, I’ve learned a few things about myself and about how I can best deal with his sometimes extreme personality. For example:
1. It’s not always your fault.
Especially in the early days, I dealt with feelings of guilt and negativity about Felix’s behavior. While only I am responsible for my emotions, I found other people sometimes tossed seeds of doubt and insecurity my way, which I would stupidly water with worry and allow to take root. You should try this or that method of parenting, they’d suggest. Be harder, more authoritarian. Or be softer, more accommodating. Whatever the case, I took this to mean that my son’s difficult personality must lay with me, with something I was doing or not doing right.
This turned out not to be the case. While certain adults handled him better than others, every adult found him a challenging child, one who required near constant supervision and help. I was alone with him for eight hours a day, five days a week, so of course I felt this more acutely and took it personally, but it wasn’t me.
2. Sometimes you make mistakes, and you have to forgive yourself.
That said, there were times when I lost my patience, when I became angry with him, when I lost it and said mean things, or scared him — when I wasn’t the best parent I could be. It never feels good to fail, or not hit the mark you’ve set for yourself, and it feels even worse to mishandle the thing you love most dearly. All you can do is apologize to your child, and then brush yourself off, trying to learn from those mistakes. Don’t become mired in remorse, and don’t beat yourself up for your missteps. We all make them, and parents of special needs kids may make them more since their children push them harder and require what can sometimes feel like impossible amounts of patience and kindness and coolness under fire.
3. It’s OK to make unusual allowances for kids with special needs.
One frequent mistake I used to make was trying to pretend that my son didn’t have special needs. I’d try to fool myself into thinking that he could, for example, go to a playground and find other kids to play with or engage in imaginative games alone instead of needing me to help him interact with his peers or structure his games. Other times we’d take him to a birthday party and watch as the combination of unstructured playtime and sugary snacks revved him so high that he couldn’t contain himself, and he’d tear around hitting and scratching kids.
Now we’re clearer with ourselves and with other people: he’s becoming more independent, but still needs a lot of help. So when a parent suggests we get together and chat while the kids play, I make clear that won’t work for my son, or it might only work for 20 minutes or so. When we go to birthday parties, I (or my wife) stick close by him and help him manage his excitement, even though I might be the only parent holding his child’s hand during the activities. When my son shows people his room, we own the fact that I sleep in a bed next to him, so that he can crawl in with me when his night terrors have him up and bothered. And now it’s even clearer: he’ll be in a classroom with two teachers next year, where other kids, like him, have an Individual Education Plan.
Don’t feel ashamed by this! If it’s what your kid needs to have a good time and be with others, either at leisure or in a classroom, then that’s fine. Measure yourself by how well you meet your child’s needs, not by how well you fit in with the group or meet the expectations of others.
4. Find a support team of people who really see your child and recognize his/her issues.
When Felix’s teachers first approached us about his problems in the classroom, my wife and I felt isolated and somewhat lost, full of questions about whether we were providing him the help he needed. Then I began talking about these problems with my therapist, and we initiated the process that eventually led to forming our son’s education plan, and working with a special education teacher, and finding him a therapist. So when we sat down to discuss the assistance he’ll need transitioning to kindergarten, we were not alone, we had a team of people there who all knew Felix, and how wonderfully bright and creative he is, and also how his emotions can be challenging for him to control. The conversation we had was productive and, more importantly, formed from multiple, informed perspectives. We feel more confident that a good plan is in place for his future, and we don’t feel nearly as alone in helping him.
5. Know when to retreat, refresh, and recharge.
This comes in two flavors: first, when you’re in the heat of the moment and about to lose it — tag out. Call your partner and excuse yourself. Of course, for us stay-at-home parents that’s not always possible, so get some digital help instead. Flip on the TV. Hand out the smartphone or iPad. Then go to another room and close a door for a few minutes. Find some way to grab at least a couple of minutes to breathe deep and calm down.
In regards to the bigger picture, make sure you’re taking time to treat yourself, as well. It is exhausting taking care of any child, but especially one with special needs. Go out a night a week with a friend. Schedule a date night with your partner. Exercise, or at least just take a walk. Do something fun! And whatever it is, try not to stay focused on your child the whole time. Grab a magazine and find something silly to talk about, or go someplace where you can do some good people-watching. Make space for yourself to be something other than just a parent, because when you’re raising a kid who takes a lot of your time and energy, it can be easy to forget that you once had another life. Taking a break from the parenting duties means you come back with a fresh perspective and renewed enthusiasm, so this isn’t just for you, it’s for your child’s good, as well.