A family's story

That Familiar Beast

Oh, anxiety…how’d I’d like to take you in a dark alley and teach you a thing or three for messing with my son. Mess with me all you want…I can handle it, well, kind of. But my kid? My beautiful six year old boy?! My child who already has so many obstacles to tackle each day? Why must you torment him? You are literally tearing him apart.

About a week ago, Tate’s sleep patterns started to change. He was fighting sleep, even if we let him sleep in Jake’s room. He was scripting prior to falling into a restless slumber. He was waking in the middle of the night. He was roaming our hallway. He was cracking his neck. Ugh…that sound of cartilage and tissue grinding against each other. There is nothing quite as ooky as that sound. Tate was doing it over and over and over. Then the leg thrashing. Then the pacing. Oh, Tater…

Late last week Tate asked for the first time if he could please not go to school. He was quite polite and did use please. When I told him that he had to go to school, the look of sadness, while fleeting, was there. It broke my heart. He likes the routine of school. I know he likes his teacher and his aide. He knows most of the kids in his self-contained class from last year, so I know that the social anxiety couldn’t be any higher than normal. But the anxiety was there…is there.

Our ABA therapists have been tracking it. They are recording the frequency of his “anxiety” scripts. We all know which ones he pulls out when everything is just too much. The ones about worms, and bees, and potty talk. The ABA coordinator is writing a program for dealing with Tate’s scripting and a few other behaviors that manifest when anxiety takes hold. It cannot come soon enough.

The one therapist mentioned that the anxiety is starting to interfere with his progress. He is so anxious about not being able to complete a program that he can’t even get started on it. Or if it is a new program, he gets anxious about it because he hasn’t done it before. His OT mentioned the same anxiety. He is introducing a few new regiments into the therapy hour, and Tate literally climbed the wall yesterday. (The rock wall in the therapy room.) Oh, Tater…

And, finally, I got a phone call. My first, “Mrs. Hope” call. You know the call. You know that tone of voice the teacher takes on when s/he has to deliver some news that s/he knows you will not like, but need to hear. The breath caught in my chest as she said it.

I would like to ask the district’s behavior specialist to attend our IEP meeting in October. I’d like to have her come observe Tate in the classroom, and help us write some behavior plans. Also, to help give me and Mrs. Popp (the aide), ideas for how to better help Tate when his anxiety is taking over. I want to open a domain for him. Are you ok with this?

Yes. I welcome having her observations and recommendations. We’ve noticed his anxiety spiking at home, too. What is happening at school?

Well, uh, lately he gets so anxious towards the end of math. All I can think of is that last week he wasn’t quite done with his worksheet, and the other kids were already heading outside, and maybe, uh, he was afraid of missing out at recess…so now, every day since then he has gotten super anxious the last 5 to 10 minutes of class.

So, the transition period? Yeah, he’s really struggling with transitions with me and my husband at home. Chill time to homework. Chill time to dinner. Dinner to bath. It’s, well, I’m glad that you told me this. Would you mind tracking it a bit? See, we met with Tate’s psychiatrist the first week of school, and she was hesitant to add any anxiety meds to the mix. She wanted to see how he would do as school got established..but, yeah, this is not good. So I just want some data to bring to her. And, thanks again, for asking about the behavior specialist. I agree…something needs to be done.

I can track it, sure. And then I’ll go ahead and write the request for [behavior specialist] to come observe. I really just want to help Tate in school. He’s a bright kid, but this anxiety..it’s just really interfering. Thank you for agreeing to it.

No problem. I appreciate you taking the time to try to address it. I know it’s been bad lately. His therapists are noticing a spike, too. They are trying to write a program for it, so they can address it here in therapy, but it would be great to get some generalization into the classroom, too.

Thanks, Mrs. Hope. I’ll send home the updated info later this week.

We ended the phone conversation. I was a bit crushed. It’s everywhere…this anxiety beast. It’s taking over Tate’s life. He can’t escape from it at all. As his anxiety increases, his ability to attend decreases. His focus is lost. He gets lost in that world of his, which is not so happy right now. He can’t sleep. He can’t eat. He roams around scripting and not clearly communicating. Not all of the time, but during portions of his day. Portions of his day that he should be using to learn, have fun, sleep, recharge…and instead? He’s fighting with that ugly, overbearing beast.

So, now I jump into “everything’s rosy” mode to “let’s deal with this next issue” mode. Everyone is tracking his anxiety. Next, we’ll bring our information to the psychiatrist. Hopefully we can formulate a plan for Tate with therapy and some changes at home and school to help him successfully put that anxiety beast in its place…or at least out of his life for a few hours during day.

I know how awful I feel when anxiety takes over my life, and I’m a neuro-typical adult. I know that it won’t last forever. I know ways to help myself feel better. But my son? My autistic boy? He doesn’t understand. He knows this awful feeling and struggle..and nothing is making it better. He must be scared. So very scared. And that rips me apart…..

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Comments on: "That Familiar Beast" (6)

  1. Oh no! My heart is breaking for both of you. But it sounds like you are doing everything that you can do in exactly the right way. It sounds like with data, they can see the “antecedent” (trigger) for the patterns of spiking anxiety. One of them is obviously taking longer to do the math than the rest of his friends. So addressing that should be the easy part – like giving him a chance to finish it later or start it earlier so he doesn’t get penalized by missing out on recess when he takes longer to complete the work. The hard part is seeing our kids suffer when they are “full up” or on overload with school. We are just starting to experience some of this too. Sending great big hugs (I hear chocolate helps too…) 😉

    • Thanks, Karen. That is a great point about letting him finish it later…I will have to bring that up with her. Chocolate does wonders. 🙂

  2. Can I stand with you in solidarity on this one? Anxiety is a tricky beast. I wish you the best of luck in tackling it. It sounds like you’re doing all the right things. One thing that helped ease the issues when they struck for us was modification of assignments. If getting things done at the same time as everyone else was causing a problem, we had the number of problems reduced. With a kid on the spectrum recess is as important as any academic subject, so I wanted to make sure he wasn’t missing any of that time.

    • Thanks, Neil. I will talk to the teacher about modifying the assignment, or seeing if he can finish it later.

      I agree, recess is incredibly important for our kids…Tate needs that time with his peers..and to get out his energy outside!!

  3. […] That Familiar Beast (betweenhopeandahardplace.wordpress.com) […]

  4. […] Plan to help him function  more successfully in school. I know I have talked about this before…but we made it official on Thursday. The district now has 60 days to complete the FBA and […]

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