March 16, 2017

Our Autism Roller Coaster

There's just no better way to describe it. There are extreme highs and lows and unexpected twists and turns. There are times where I'm holding on as tight as I can. And there are times when I let go and just throw my hands in the air.

Yesterday was one of the lowest lows I have felt since hopping on this crazy ride.

Transitions from therapy to home have always been (and continue to be) a struggle. Tyler and I, along with his team have tried so many different approaches. He will have awesome days at therapy. Completes programs, is compliant, and is just so happy to be there. I have therapists all the time that don't work with him directly tell me that seeing Kase and saying hi to him is the highlight of their day. He truly does bring so much joy to everyone around him.

He will get his jacket, hat and backpack on with no issue (most days). But the moment he sees me, he melts down. He throws himself to the floor and often refuses to get up to walk to the van. Like I said, we have tried different things with his therapists and they have been so helpful. They usually walk him to me holding his hand, and I will grab his other hand and together, we will not allow him to flop. They now usually walk with us out to the van and make sure he walks the whole time. He definitely still fights it, but this has the best way we have found so far. We have worked hard on him getting into his car seat on his own. If he doesn't, I will bring him back out of the van and say, "Try again." He hates the whole "try again" thing, but it works.

So let's talk about yesterday. Wednesday's are already hard. They are different from the other days and as many of you probably know, any changes in routine can be tough. The other four days he just goes to his ABA clinic. On Wednesday mornings he goes to a different clinic for speech and OT, then home for a little bit, then to his ABA clinic in the afternoon. We just started speech and OT the beginning of January so we don't know the therapists as well and they don't know us as well.

I'm not going to lie, I dread pick ups at this clinic. I know exactly how they're going to go. Yesterday was much of the same, but worse.

Him and his therapist were walking and as soon as he saw me, he dove to the floor. There happened to be four people walking behind him who reacted as if we fell and wanted to make sure he was OK. I reassured them that he was fine as they stepped over him to get by. I immediately tried to get him to stand up with no success. His therapist told me he had a great session and was trying to give me a little more detail, but I couldn't focus on what she was saying. He then took off toward the other side of the clinic. His therapist was trying to help and was saying things like, "Come on Kase, it's time to go home." in a nice, calm voice. He doesn't react to that. He reacts to a stern, "Kase come over here, now." It's something Tyler and I have learned just in the last couple months. His therapists at his ABA clinic agree. When you are all nice and try to get him to eat something, he won't do it. But if you just simply say, "Kase, take a bite." he will do it. This hasn't always been the case, but as he gets older, this approach works much better for him.

So anyway, he wouldn't listen to either of us. The clinic was full of people and although I shouldn't care, I think it's natural to worry about what everyone else is thinking.

I wrestled with him enough to get his jacket and hat on and tried to get him to stand up. I lifted him up and he refused to put his feet down to walk. In the meantime, Kenley had been very good and listening when I told her to stay by me, but she had grown impatient. So she took off toward the front door. I carried/dragged Kase a little bit and then he took off. I scooped Kenley up and chased him, but not before he was out in the parking lot. Thankfully no cars were driving through at that time.

Although we're fairly new to this clinic, I think his therapist knows by now to expect this type of behavior when I pick him up. I was a little sad that she didn't offer to help. She stood by and watched.  In her defense, I don't know how she could have helped because I don't even know what to do. But I do think I need to ask her to help us get to the van safely. Now that he took off in the parking lot once, he will surely try it again. He goes to this clinic on Saturday's too, but thankfully whoever picks him up can go by themselves and have all their attention on him while the other one stays home with the girls.

We got in the van and he grabbed the iPad. I told him to get in his seat so we could get buckled. He threw the iPad across the van. I got them both buckled, sat down in my seat and finally took a breath. He was screaming for the iPad, which of course he did not get.

We got home and he was back to his happy self, as if none of that happened. I wish I could forget things that easily. I was upset about it all day.

A couple hours later I took him to his ABA clinic and when I picked him up later, his therapist told me he had a fantastic day and he walked right out to the van and got in his seat. Of course I was thrilled with this, but I couldn't help but shake my head. This autism thing is confusing.

I really don't know what to say about meltdowns like this. I cried most of the way home because I hate not knowing what to do or how to help him. Does he do it strictly for attention? Is it because he doesn't want to leave? Is it all part of his sensory issues? Is it because he requires so much sensory input that the bumping into things and falling is the only way he knows how to get it? Can he help it?

I hate not knowing why he does this. But most importantly, I hate not knowing how to help him.

This morning, as I was about to take him into therapy, he looked at me and said, "Mommy, I'm proud of you." I tell all three kids all the time that I'm proud of them, but this is the first time he's ever said this. And although I'm certain he doesn't really understand what that means, I'll take it. Mommy needed a little encouragement this morning. Thanks, buddy!


  1. You are one strong mom! Kase (and Kyla and Kenley!) are so lucky to have you! Thank you for sharing. You truly are bringing autism awareness to others in such a classy, modest, truthful, eye-opening way. Hold your head high--you are amazing.

  2. Oh gosh, Amy, I know what you're saying. Mason doesn't act like that much anymore, but for the first couple months of dropping him off at his ABA clinic on Saturdays, he would scream and cry. Seth and I would just have to give him to his therapist and leave. I felt terrible. And everyone was starring. And of course, I was feeling super judged then too. I feel like in a place like that, people should be understanding, but I can't help but feel like all eyes were on me. Having said that, do you think it's because that clinic is new? That he's still getting used to it? I mean if he doesn't act that way at the other place, it's obviously not that he's upset to see you or anything, maybe there's something different about this place? I wish they were better at expressing themselves (Mason is terrible too) because maybe something is going on and he just doesn't know how to express it? Even though his therapist says he had a good day, maybe there's something or someone there that he doesn't like?