The Year of Living Hopefully

No, I’m not going to give you any. Well, maybe a teeny bit.

If you are a parent of a special needs child, I’m sure you could write this blog post yourself. Actually, I bet all parents feel this way. But it’s especially applicable to us.

Notice to everyone: Your parenting knowledge doesn’t apply to us.

“Don’t let your child have so much screen time.”

I love the idea in theory, but Maddie actually needs to check out for a bit. It’s how her day will be OK. She also has a social life online that is hard for her to achieve in the real world. She actually has friends, and what’s cool is they’re from all over the world. She can be fully herself and isn’t judged or rejected. I suppose I could curtail it more than I do, but I’m doing my best and what works for our family.

“Make your child eat what you make. Don’t cater to picky eating habits.”

Maddie will literally not eat in that case. We love for her to try new things, but I have come to view her reluctance as actual fear. Because of her sensory issues, certain textures and strong tastes are unbearable for her. So I do the best I can within her limited range of acceptable foods. I hope someday she becomes more able to tolerate new sensations in her mouth.

“Kids just need blah blah blah. You just need to blah blah blah. Make a chart, take this away, give her that. You’re too accommodating, you need to be stricter, make charts, have a prize basket…”

My husband and I have heard it all. We’ve also tried it all. I don’t know that anybody really appreciates unsolicited parenting advice, but for parents of special needs, it can be particularly unhelpful. Can a car mechanic fix a plane engine? Maybe or maybe not. Cars and planes both have engines, but they don’t work the same way. So would you let a car mechanic tell you how to fix your plane? Probably not.

And not only do we have a plane, we have one that’s different from all the other planes out there. She requires a number of plane specialists to all advise her plane caretakers on what to do. And still much of the time that magic one-of-a-kind plane does her own thing and baffles us all.

Once a very close friend was trying to be helpful, making suggestions for how to discipline Maddie. It was during a particularly difficult time when Maddie’s difficulty understanding and expressing her own emotions resulted in some aggressive behavior, usually directed at me. I was exhausted, frustrated, defeated, demoralized, sad, and even traumatized. I know the advice came from a place of love, but what we needed more than advice was compassion.

Jake finally shut down that topic with one short statement, “We see a lot of professionals.” Yes we do! Psychiatrists, psychologists, social group facilitators, speech therapists, school counselors, school psychologists, special ed teachers, occupational therapists. Your kids look easy to us because if you follow all the advice in parenting books, your strategies might work! But we have a kid for whom there is no manual. If there WAS a manual we would have to read it over and over again because everything changes from one day to the next. Maybe it could be an “if this….then that” kind of a thing, an interactive book or a video game.

“Ooooooh!” we could all say. “THAT’S what we should do!”

I never offer parenting advice to other parents of special needs kids because I know our families are different and our kids are different. I do share my own experiences, though, in case somebody’s interested. I might pass on the name of the social thinking teacher because she’s so so wonderful and maybe you’re interested. I might say, “I wish I had gotten a full neuropsych evaluation instead of relying on the school to do it” because I do wish that. I might also say, “I wish I had done lots of boring stuff with my kids when they were little so they could go out and be bored and it wouldn’t be a big deal.” Those are my own lessons. Take them or leave them. I don’t know what you’re doing or what you’re not doing or what you should or shouldn’t be doing. Beats me. You’re probably doing a really great job. I don’t know what I’m doing half the time. Or maybe three quarters of the time. How can I tell anybody else what to do?

But here is that teeny bit of advice advice I do feel comfortable giving:

Trust that you are the expert. You know your child better than anybody. You might need guidance for getting the services you need, but don’t let anybody tell you who your kid is. Follow your gut, moms and dads! You’re doing a good job just by loving and advocating for your kid. You recognize you don’t know everything, and that’s okay. You keep trying. Your kids are lucky to have you.

Okay, one more teeny but important piece of advice.

Recently I was out with a very good friend. We’ve known each other since Maddie was a baby. She has been there for everything. She doesn’t pretend to know what my life is like. She has her own life challenges. We just love each other and support each other.

“What you need to do,” she began, “is take care of yourself.” She told me I’ve spent so many years taking care of everybody else, it’s time for me.

Just what I needed. One sentence that expressed so much. I was so grateful.

“I get a lot of advice,” I responded, “and a lot of it upsets me.” I could see her face drop. She thought she’d crossed a line. I grabbed her hand and looked her in the eyes. “But that is really good advice. Thank you.”

So there you have it, all my wonderful advice right there. Trust yourself and be kind to yourself.