What if you could ask someone who has and grew up with Aspergers, someone who knows how it is to walk in our kids’ shoes (or crocs, whatevs), what it is really like? What if that person was also a momma to a child with Aspergers/HFA, so you could ask her about how she parents, knowing what she knows, feeling what she feels?
We are so fortunate to have one such momma in our midst. Rachel L. Tiede is a fellow mom who reads Not The Former Things. She has Aspergers. So does her son.
She has graciously commented and messaged me a few times, with advice and encouragement that I have found to be invaluable in relating to my son. Below are her words to me, and I am sharing them with her permission (of course!), because I didn’t want to keep this amazing look at our world to myself. And neither did Rachel. She is passionate about education and acceptance. She is generous with her time, her wisdom and her experience.
Even if you do not parent a child on the spectrum, Rachel helps us understand what it is like to be on the other side, looking at the world, trying to figure out. There are her words, verbatim (with the exception of a few cut and pastes for continuity).
My deepest thanks to Rachel. I am grateful for her heart to teach and encourage. She is helping me be a better momma.
I Have Apergers and My Child Has Aspergers
I love being an Aspie. Asperger’s makes all those little things make sense. The “misunderstandings”… the feeling of rejection but not understanding why… And now that I can see things, including my own behavior, through the light of Asperger’s… I always tell people, “I see my past with different eyes, now.” I know how confused I was all the time, and I totally get that my friends and family didn’t understand what was going on any more than I did.
My parents started attending their current church shortly after they got married in 1960. When I was young and in Youth Group, just about everybody in the group had been born into the church, and I honestly can’t remember a time when I didn’t know all of them. Church was an extension of family. And these people were as much family as any of my aunts, uncles & cousins. One of the plagues of being an Aspie is that I find it very difficult to order my thoughts in such a way that others can see my train of thought and understand the jumps and conclusions. Some days are worse than others, and it is so hard and so frustrating trying to communicate.
One day in Sunday School, I was having a particularly difficult time. And I remember thinking… “If I can just get this out, they’re going to think I’m brilliant!” But I couldn’t. And I was struggling and fighting. Finally, one of the girls across the room, who I had known my WHOLE LIFE… not an exaggeration… She sighed really loud and with a mixture of anger & frustration she said, “Just shut up, Rachel! Nobody really cares anyway!” It was dead quiet in that room. No one spoke. I looked around, no one would even look at me… not even my brother. Finally her brother, who was a young college student and leading our group for the summer, just picked up his book and started reading where he’d left off.
It was so painful! And I can still hear it in my mind. I started to pretend to be what I thought they wanted me to be… which was some ditzy girl who didn’t have a brain in her head. And it hurt. It still hurts sometimes. But you see, now I know… I know that they were just as frustrated as I was sitting in that room. I know that they just didn’t understand any more than I did. And I can look and apply grace and say, “It’s Ok and I’m Ok“.
I truly believe that if you educate people, they will care. If you tell them and explain it to them… I’ve seen the people in my life who have been frustrated, and I’ve seen the lightbulbs come on when I start to explain Asperger’s/HFA. They get it. And it’s cool. And when I struggle now, I can just pause and say… “Hey. I’m having an Aspie moment, and I honestly can’t tell if you’re with me or not…” Then if they’re having trouble following, they’ll ask me a question. If they have it, then they give me permission to move on. And it works.
My best recommendations for how to best parent a child with Aspergers/HF Autism:
- Be open and honest… with him and about him. Be open with him and encourage him to be open with you about situations. Encourage communication about how things are affecting him. “I see that look. Can you tell me what you’re feeling?” If communication is an issue, stick to the Yes/No questions… Is it loud? Do you feel hot? And be honest with others. I’ve already hammered the idea that the more we educate those around us, the more they can respond appropriately and they can learn how to help him. And they will.
- Set a routine & try to keep it. And if you need to break it… cuz sometimes you will… give him as much warning as you can, communicating how you’re going to change the routine & why. In our experience, it’s easier for for son to adjust if we prepare him for changes.
- Coping mechanisms… earphones. It’s a great investment! People may look at him because he’s wearing them… but better that than having a meltdown in a crowd. Also sunglasses, if he’s light-sensitive. Make sure to take him with you when you pick them out, and explain to him… “Honey, we’re getting these for you so it won’t be so loud all the time.” Then let him pick them. The more control he has over it, the better he’ll feel about wearing them. Also… one of those squeezy stress balls… always good to have around. Something he can touch and squeeze and get some tension out with.
- Textures and balance… They MATTER!! If it looks weird… it matters. When you buy clothes, let him feel them before you pick them out. Fabrics can make or break a day. Color-balance… If a meal is heavy on one color… I know it’s weird, but it kind-of creeps me out. And I have LOTS of food rules. Crazy, stupid rules. A couple… I never eat anything that looks to me like it can go down my throat by itself. So … mushrooms. Slimy. Yuck. I don’t eat anything that looks me in the eye when I walk in the door… No lobster.
- Balance, Balance, Balance. And did I mention balance? And balance is whatever he defines it as. But if something feels out of balance… the more things out of balance, the more likely for a meltdown. Get feedback from him as to what makes him feel balanced and what makes him feel out of balance. And then do what you can to help him learn how to create balance for himself. That’s a fantastic lifelong skill for an Aspie. What doesn’t feel right? What can we do to make it feel better?
- Facts. We love facts. We love facts, and we love rules and we love things that we can depend on. Things that make sense when nothing else does.
- Asperger’s/HFA is neither good or bad. It is a fact. If you treat it this way, he doesn’t have to see himself as a “victim” of Asperger’s/HFA or as someone who’s “disabled” (which always feels like “deficient”). It’s just how he was made, and that’s ok!
- Affirmation. Point out the things he does, particularly Aspie-things, that are positive. Make a habit of it. Teach him things that are positive about being an Aspie, and he will learn to see the positive side of it. The flipside works, too. When he’s doing something, and you know it’s an Aspie thing, but you need him to stop… You can gently say, “Hey. This is one of those Aspie things. I get that. But we need to find another way to express this…” Just like any other person, he has amazing traits and he has challenges. No big. We praise the amazing and we work on the challenges.
- If you want him to like something (or someone), talk about it. A lot. In a positive way. And he will just naturally start to see it that way.
- Communication… It’s the hardest thing for an Aspie. So teach it. Teach it by modeling it. Communicate with him, and communication becomes the norm. This is pretty much true about everything. You treat something as “normal”, and he will accept it that way. And when he has trouble communicating, be patient. Take deep breaths and give him time to get it out.
- Do what works for your family Find out what affects your, and make adjustments. And do what works for YOU. Don’t apologize or be embarrassed about adjustments that you need to make. You’re doing what you have to do. If someone asks, just tell them… Hey. My son’s an Aspie, and that means that this situation… (explain effect). So we’re helping him by… (explain what you’re doing). It’s a fact. He has needs, and we’re taking care of them.
- I believe getting our children out in public is important… but I also know that it’s not always realistic. My big thing… just don’t hide. Don’t withdraw because you’re ashamed or embarrassed. If you do that, then he’ll learn to see it as something embarrassing, something to be ashamed about. But if you need to withdraw in order to control his environment… then OF COURSE do that! A tired, overwhelmed Aspie is not a good thing in public! For example, if you do go to church, make sure you control the environment. Go early and get seated first, or go late and sit in the back. Let the ushers know what spot feels good to him and ask them to keep it open for him. Make sure you get him a bulletin so he can follow along and see what comes next. Talk to the Pastor and get him to send you an “agenda”, the scripture, etc. so you can prepare him. And if he can’t handle it that day… then don’t sweat it! Do Family Worship. Or… if one of you stays home, then you do the service at home, then compare with the other parent when they get home, to reinforce that you did the same things and to talk over what you learned.
- Do what works for you and your child!