Regression

Regression is one of those things that I’m sure every parent of a child who has autism hates to go through. The other day our daughter’s therapist told us she thinks Gabby may be going through some regression. We’d been seeing signs of her slipping back into some of her old behaviors for a few weeks now. It still stinks when they tell you that she can’t help it and we don’t know how long it will take to get back to the progress we had been making. As a parent, it makes you find yourself asking “what could we have done to have prevented this slip backwards?”. I wanted to cry when the therapist gave her answer, “Nothing”. According to her, children with spec    trum disorders often regress into many past behaviors. It’s just like a phase or a cycle that Gabby is going through right now. To make it worse, the therapist also said that regression can last days, weeks, or even years.

I felt so heartbroken. To think that we’d made all of this progress with Gabby, and now we are moving backwards and starting over. . . this isn’t Candyland, where you have to go back to the start or Monopoly where you go back to Go and don’t collect $200! This is real life; how could this be happening! It is the worst feeling when you realize you just spent the last three years correcting all of these issues and getting your child on track only to be right back where you started. It just doesn’t seem fair!

In the last couple of weeks, Gabby has been experiencing an increased sensory overload. This is where, the sounds and sensations she is feeling overwhelm her and she can’t handle it so she has a meltdown. It happened at her birthday party at Chuck-E-Cheese. We were in line to get her prizes and there was a crowd of people building up behind us. When it got to be her turn to pick her toys, she froze and didn’t respond. So I said, “Gabby, tell the lady what you want, there are other people waiting”. She spent a few more seconds and started showing some signs of distress (whining, covering up her ears) and then she just exploded. She yelled out “It’s too loud and all of these people won’t shut up and I can’t think!”. We had to move her to the other side of the prize area so she could pick out her toys without a ton of people encroaching on her and talking about what they wanted. She even melted down about being moved to the other prize area, until she realized that the prizes on that side were the same as the others. I know Chuck-E-Cheese is a noisy place, but it still surprised us that she reacted like that because it had been over a year since she had experienced any sensory overload like this. I kind of put this incident behind me and thought maybe it was just a fluke or that it was in fact way too noisy for her in there. Then last night during therapy, her brother decided to run around the house pushing his toy truck and it happened again. She started screaming telling Dylan to stop, telling us he was being too loud for her to color in her workbook. Even when Dylan tried to slow down and play with the truck quietly, she still just couldn’t stand it.

We have also been seeing an increase in Gabby’s tantrums. Anytime something dissatisfies her she has reacted by having massive meltdowns. I had a doctors appointment this week and had to have my in-laws come over to see the kids off the bus. Unfortunately, Dylan’s bus comes earlier than Gabby’s and she knows that too. That morning when my mother-in-law called to confirm that she would be there in the afternoon, Gabby became instantly upset. When I asked her what was wrong she pointed out the fact that Dylan would get to spend more time with Grandma Mary. She was crying and very emotional about it. I did my best to calm her but I was interrupted by the bus arriving to pick her up for school. That afternoon I got home just as Gabby’s bus was arriving to drop her off with Grandma, Grandpa and Dylan waiting for her. Just as I had anticipated, the second she stepped off the bus and saw them with Dylan and me already home from my appointment she became distraught. It was so bad that she didn’t stop crying until they left. No matter how much Grandma Mary promised that she’d get to spend more time with her on the weekend or that they didn’t really spend that much more time with Dylan, nothing helped to calm her. She was so angry and upset, her face turned a shade of deep red, she was stamping her feet, and would tense up becoming very rigid and stiff every time Grandma would respond to her. She would go back and forth from being “lucid” for a few seconds and then right back into meltdown mode. It got so bad that I had to scold her for the way she was speaking to her grandmother. And like many of her tantrums she shut off her waterworks, her screaming, and her meltdown like a light switch the second her grandma walked out the door. To her it was like nothing had ever happened. These tantrums can occur over the most minor happenings. Some examples of some of the things that can set her off include: her brother getting to pick his own show to watch, her brother needing alone time, getting the wrong color plate at dinner time, her not being able to get her writing or a drawing just the way she wants it to look, if Dylan’s craft looks better than hers, and my personal favorite is when the marshmallow to dry cereal ratio in her Lucky Charms is inadequate therefore rendering them inedible. Even a broken crayon can seem like the end of the world to my daughter. No matter how much you tell her that we can peel off the paper and it’s still the same crayon, to her it is simply unusable and must be destroyed.

Another really awful regression we have been seeing is her selective hearing. Sometimes when we are trying to get her attention she just doesn’t seem to hear us. I can be saying her name over and over again but she looks on and doesn’t acknowledge one word I’ve said. If we didn’t know any better, we’d think there was something wrong with her hearing. This happened the other day when I caught Gabby mindlessly eating one of her crayons. I yelled out her name to get her attention, “Gabby”. No response, not even a blink of her eyes. I said her name a bit louder “Gabby!”. Still, nothing, still shaving off little bits of colored wax into her mouth. I finally walked over to her and had to physically remove the crayon from her hand, “We don’t eat crayons, Gabby, they are for coloring on paper only”. A couple minutes later I had to take the crayons away after catching her chewing on another wonderful wax-flavored color of the rainbow (sigh).

I know it’s only three slips of regression but add to it that we are still dealing with her day-to-day behavioral issues, and you can understand how overwhelming this situation feels. The current issues include: needing her meals to be a certain way, needing clothes to be just so, wanting to be on schedule for every little thing with absolutely no room for deviation, her need to talk incessantly to express herself and her often very abrasive opinions, and her needing to run, stand, and be in motion basically during all waking hours (this includes meal times – she simply cannot sit still). As parents, Ryan and I will have to revisit our past ways of defusing tantrums, correcting her selective hearing, and making sure we prevent her sensory overload as often as we can. All that on top of the work we already have been doing to keep her well behaved, well adjusted, stress free, and most importantly happy; it’s a lot to take on.

I suppose when you are a parent raising a child with autism you kind of have to be prepared to change gears at a moments notice. I know I feel super overwhelmed at times with all the sudden changes and new information we are learning everyday about autism. I admit that I think that the regression is a horrible thing that I wish we didn’t have to experience, but I honestly think that living through all it is making us better parents than we ever thought we would be. My daughter may exhaust me and stress me out like no other child, but I also couldn’t be more proud of the little person she is becoming. And I like to think Ryan and I have a huge part to play in how far she has grown in her six years on this planet. Gabby is an intelligent, creative, loving, well spoken albeit opinionated, and sometimes wise beyond her years six year old. What parent wouldn’t be proud of that!