When you realize that coping has not improved beyond a certain point for your child, and meltdowns that stress the whole family exhaustingly occur daily, it is heartbreaking not to have an immediate solution. I’ve read book upon book hoping to find the key to ease my son’s struggle with spectrum and SPD/OCD behaviors. There has been amazing growth in my understanding of how his brain works, which helps immensely in parenting, but I’ve realized that isn’t enough. He needs more help than I can give him.
So several months ago I decided to pursue a diagnosis for autism spectrum disorder. We did the intake process for Kennedy-Krieger Institute for Autism Research and resources. They called to say the wait list was 11 months out. I don’t feel like our family has 11 months. We’re struggling too much. The constant stress is causing marital friction because we have no energy left for each other anymore.
A few months ago I called about 15 practitioners’ offices to see if they could help us reach a diagnosis. I got ahold of a live person for about two of those calls. They couldn’t help. Maybe three called me back. That’s when I got him signed up for Kennedy Krieger. Waited to find out when we could have him assessed there. After I heard about the wait time, I kept calling other places. Thought I had a good option lined up, but they double booked, and I felt like that may not be a good sign, and called another 15 places. Most called back and said they do not do diagnostics for children.
The ones who do work with kids and called back said the wait list is a few months out. Because there are that many families struggling with spectrum disorders. And it’s a hard journey. It’s lonely. The main caretaker gets burnt out. The spouse gets burnt out because the one who stays at home is burnt out.
Not everyone understands. You feel unsupported by those you would like support from but who question your intuition and the whole idea of autism. If your kid does not present like Rain Man, your kid surely does not have autism, they think! I want to tell them, “Guys, it’s a processing difference, and it’s a spectrum. They can need little support and appear like other kids in classroom on the surface, but come home and have no more energy to hold it all together, and then let their frustration out where they feel safest. Or they can need a lot of support and be nonverbal. But both kinds of kids and their families can be in a lot of emotional distress because life is so hard with this disorder.”
But I don’t really have to be understood or to explain it at all to them. My job is to advocate for my child and get him and our family the care we need to do more than just survive. And right now, it stinks big time, but I guess it’s just waiting for the nearest appointment date even if it feels too far away.
My 5 yr. old son asked for another piece of pizza, a rare treat at our place since I am gluten-free and don’t usually have the energy to make it myself and avoid certain ingredients for my healthy eating standards. He was so happy when I said sure…but when I gave it to him, he kind of stared at the piece and started to zone out as his face fell a little.
I asked him, “What’s wrong, hon?” But I could have guessed. You see, the pizza crust was not big enough for him to hold without getting sauce on his fingers. The sauce went too far up. And as much as he loves pizza, his desire to avoid that messy feeling is greater. He knows he can wipe his hands on a napkin or wash his hands later, but he can’t do it.
I found myself thinking, Wow. He didn’t throw a fit! He didn’t meltdown over it today! He didn’t cry or get angry! That looks like progress to me! And it is. We’ve been working with him a lot about his responses. To be frank, a lot has to do with me not getting upset with his particularities, which was hard at first because I grew up in a family where you weren’t allowed to be “picky.” Then I married a “picky” person…but I see it’s not always about pickiness. It can be about texture. It can be about how tastes hit a person’s brain. My son got a lot of the way his brain works from his dad. They can’t deal with some fabrics (my husband won’t wear “scratchy” wool sweaters, or cotton sweaters that aren’t soft enough). Not only are some things like that a turn-off or irritating, it can just plain overwhelm them, because of how their brains magnify, misinterpret, or translate a sensation. I can see now they’re not “spoiled” or “bratty” because they choose not to flood their brains with highly unpleasant feedback.
The fact that my son got a little sad about not feeling like he could enjoy the pizza he was anticipating so much makes me want to figure out ways to help him cope with his SPD more. Because sometimes, you can’t change the way things are. But in this case, it was an easy fix because the pizza was thin crust, and I just folded it over onto itself so the back of the pizza could be more of a crust, and that worked for him. No messy fingers. I guess another solution could have been cutting it up and eating it with a fork, which he has done in the past, but whatever the issue, thetriumph was that he remained calm and went on to enjoy his pizza.
Another instance of SPD showing occurred when he needed new shoes. I got him some cute ones that only needed to be zipped (because he is also kind of OCD and if the shoes have velcro, he takes forever aligning the velcro just right…more than one strap? You’ll be waiting a while) and was thrilled when he put them on, ran and hopped around, and wore them to school the next day.
After a day of school, however, with all the movements an active 5 yr. old does, he informed me they felt bumpy at the top when he knelt. So brand new shoes that I can’t return now? Tah-tah. And today, I can be okay with that. (And also thankful I mostly only buy things on sale or second-hand). Previously, I would have gotten mad that I went through the trouble to find the shoes, spent the money, and he didn’t like them after all. Life is better when I accept his issues and treat him with dignity instead of trying to fit him into my idea of the way things should be. I would want somebody to do the same for me. My husband does not get mad or rant or resent me (though it may exhaust him) when I get stuck in anxious mode and he has to hear all about my fears knowing he can’t fix me. He makes life better for me by hearing me, understanding it’s hard for me, and loving me unconditionally. I want to do that for my son.
I sometimes see my son trying to mask his SPD reactions. When we were looking for shoes another occasion, he tried to use logic to reason his way into a new pair of Paw Patrol light-up shoes. They looked perfect! But the first thing he said when he tried them on before I asked or anything was, “hmm, I feel a bump on the bottom.” Then seeing my face, and knowing I would not get them if he had a complaint, he immediately tried to reason it away, saying, “BUT I think they’ll be fine after I wear them a little while and get used to them!” Experience has taught me that if it’s annoying initially, that’ll always be the case. There were tears shed over those Paw Patrol shoes, but I wouldn’t budge.
Similarly, his little sister got some brand new PINK tennis shoes after searching many stores. They were NIKE! (We were given a gift card to the store). She LOVES pink! She tried them on. She danced around! She was so happy. She WANTED them to work! But when it came down to it, she couldn’t stand them for longer than a minute every time we tried them on after that. She’d put them on, then get stuck like glue with her bottom on the floor, not being able to get up and walk in them. It’s like her brain just shut down with them on her feet.
I am not very patient when we’re getting ready to go and people don’t have their shoes on when I asked 15 minutes earlier. A 20 minute delay really irks me. One day she tried on 3 pairs of socks and 3 pairs of shoes, and we were so late. I definitely returned the pink shoes. I was disappointed because of the amount of effort searching, and feeling exhausted and dreading that now another kid is manifesting some real SPD stuff. (It’s SO draining for me to figure out how to do life with SPD! And not just one kid’s particularities! But two…If you add in their dad’s preferences, three sensory processing packages! I guess it is draining to HAVE the SPD oneself, though, eh?!) But I was SO GLAD I know it’s just not worth it to try to MAKE something work that just isn’t going to work.
Like the pretty dress I’d bought when she was a baby, waiting for her to fit into it. It was a perfect Easter dress!
She would not wear it. She wanted to! She put it on, excited to dance and spin in it…But it was “too scratchy,” and she freaked out and cried until she got it off. Just like when she put on the brand new shirt with a seam across the chest (which I also had bought in advance. I think I have learned my lesson. “Saving money” buying things when they’re a good deal doesn’t always save money. I am also glad I can let things go by embracing minimalism and saying if it doesn’t work for me, we can pass it on, no problem. Why waste my emotional energy on it, looking at it and feeling bothered it was supposed to work but didn’t?!)
Anyhow, that’s just a glimpse of some examples of everyday issues that crop up with family members with SPD. There are more, believe me…there are more. But I can say that with a smile. Life is not over; it is just more interesting.