A family's story

Posts tagged ‘ABA’

Summer Time Blues…

Hi out there!!

I got off the blogging track, so to speak, when we took our vacation, and it’s been difficult to find time or my groove, since. I’m trying to cope with my own high anxiety, while managing that of my kids, as we enter the dog days of summer. It isn’t going so well…and I find myself struggling a bit.

Writing my blog is cathartic for me, so hopefully I’ll be able to get here more. I need to make time! We’ll see, though…starting August 5th through the 25th, I’ll have all 3 kids home with me. Tate should have ABA, which should give me some time (Cole and Jake play very well together), but who knows…

I am steeling myself for the next couple of weeks. That anxiety beast will be lurking in every corner of our house. We have a load of back-to-school activities to get through. AND we’ll be trying to squeeze in all of the fun summery stuff that we haven’t managed to fit into our schedules yet. Routines will be shot..and well, none of us really do well with that. Especially my two oldest children.

Oh, and the ABA saga…I gave notice to our ABA provider today. I put it off as long as I could. I really dislike conflict/terminating relationships. Even bad ones. But, I did it. Tate’s last day with that company will be August 23rd…unless there is some policy they have somewhere that says otherwise. (I couldn’t find anything, though, so I think 4 weeks notice is sufficient.)

Now I am all nervous about meeting our new provider. We’ll meet on August 15th. But we have already talked on the phone, as well as emailed back and forth. I have a good feeling about this one. I really do.

I am still waiting to hear if there is a snowball’s chance in Arizona of Cole getting into a morning preschool class in our district. I am currently worked up over how I’m going to manage to get my children from 2 different schools at the same time. It will work itself out, but I am perseverating. Oh, and I fluctuate from feeling good about putting Cole in a 5-day-a-week program to feeling like a bad mom. That mom guilt. It’s awful!

Oh, and like so many other kiddos on the spectrum who are not used to so much free time, Tate is more stimmy. He’s more scripty. He is sensory seeking all.the.time. I am running interference between him and his brothers…who try to be understanding, but who also need their own stims and quirks to play out to keep their shtuff together in this “free” time of summer. 

On the upside, the weather has been relatively pleasant. Fall-like, but pleasant. I like lower humidity and cooler temps. I feel much more human (and my hair doesn’t look nearly as homeless). I would be fine with our temps hovering in high 70’s-low 80’s for the rest of the summer season. Really, I would.

So, the short of it is that I’m going to try to blog more…and we have a lot going on, just like everyone else….c’mon school!!!

 

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Breaking Up is Hard to Do

I’m going to start by saying that I am terrible about ending relationships. Awful. I have let far too many go on for far too long. Many times, the situation has gotten toxic and out of hand before I take action. I dislike conflict. I abhor confrontation. And change, change makes me feel so…so…anxious. So much so, that I’ll tolerate a situation or relationship or job for much longer than any sane individual should.

While we love our ABA therapists, we are not very happy with our coordinator/director. There is little communication. I actually sent out the summer schedule this year. I had to send emails upon emails upon emails to her to get any type of answer. We often “agree to disagree”. I get brief emails with directions. We rarely talk face to face, and when we do, it feels like I’m being chastised or corrected…like I don’t know what I’m doing. (In regards to ABA, that may be true, but I DO know my son.)

I was referred to another BCBA from someone. This BCBA consults on all of her clients cases. She meets with the team once a month–without being prompted by the parents. I talked with her. I read her resume and background. I talked to a current client. I love her approach of using traditional ABA concepts, but also incorporating other methods of therapy and education. She takes our insurance, too. I can’t find anything wrong with the new BCBA.(Except that she lives in the city, so we’ll have the same issue of her having to travel out here to run meetings and such.)

And yet…I have dragged my feet for a month on this. I don’t know how to let go of our current provider. Logically, I know it’s business. Our current provider may be frustrated or disappointed in losing a client, but I know she’ll be able to find others. But my emotions get the best of me…and my resistance to change does, as well. I know this situation. We function within it…even if it may not be the best one out there, he is making progress. But I also know that there’s got to be a better way.

I can’t figure out what is causing me to be so resistant. Change, I guess. Change is hard. Change is uncomfortable. I like the same old same old. Even if it’s not great. Also, I worry about losing our therapists that Tate has come to know so well…although, I have it on good authority that the new BCBA works with both of our main therapists…so there is a possibility that he’ll have at least one of them going forward.

In the end, though, I need to do what is right for Tate. I will have to switch providers. Even though it puts me in an awkward place. Pushes me out of my comfort zone. I know he has to deal with that every day, I think I can manage it for this.

In the Rough

In golf, when one hits the ball into the higher, more scraggly grass, he or she is said to be “in the rough”. Lately, I feel like we are all “in the rough” around here…and no matter how hard I work or concentrate or strategize, we just can’t get out. I see the desired fairway…and the short, straightforward putting green, but I just can’t get there.

Jake is struggling at school. For once, it isn’t his academics. Rather, his anxiety is reaching new levels. He is thrown for a loop when any little thing changes. His rigidity is worse than Tate’s right now. If activities or quizzes or classes don’t happen in their expected routine, he shuts down. He requires time, more time than is allotted, to regroup and press forward. This does not bode well for 4th grade.

I know that there have been discussions by his IEP team and principal as to whether or not he should be placed in an “instructional” classroom. Thankfully the team and Hubz and I agree that he should NOT be in the “instructional” class. He needs the regular education classroom. The principal agreed to keep him in regular education. Instead, we are increasing his resource room minutes next year. Some of those minutes will be in his regular education classroom, but with “push-in” from the resource teacher for additional support. 

The thought is that Jake’s IEP is updated in October. After about 6 weeks of school under his belt, we will be able to see how the increased minutes are working. If he’s managing his anxiety better, we can reduce them. If they are still needed, we will keep them in the IEP. But, for now, we have his amendment with the additional minutes. 

I am staring to think that rather than giving him “time off” during summer, I need to find a good psychologist or therapist that he can work with to devise some good plans for coping with his stress and worries. It breaks my heart to see him like this. He is more aware of his disparity with his peers…and I see it affecting his self esteem. 

Tate is struggling with the impending transitions, as well. He’s definitely more able to go with the flow of our mixed-up schedule than he used to be, which is helpful. However, he’s exhibiting more behavior that is not what we’d like to see. The “poop” talk is reaching a crescendo. I know I’m supposed to ignore it…but holy moly, I am about to lose it. I am so tired of him working that word into every. single. sentence. (And script. And story. And..everything.) I am really not sure where to go with his “poop” talk. 

My other frustration really is not even Tate’s issue… I mean, it is, but it isn’t. See, the director of our ABA team (and she’s the owner)  does not think Tate should go to ESY this year. I respect her opinion, but I think that going to ESY will be good for him academically, socially, and will help with the continuity of school.  I see more benefits to going than not. And I am his mom and his main advocate. End of story.

Anyway, she said she’d work with the schedule. The main plan was to send him 2 days a week, rather than 4 for the 6 week program. We still don’t have a summer schedule. I submitted my plans in late March/early April…even before we got notice that insurance was going to continue to cover Tate’s ABA after his 7th birthday. Insurance came through…the provider has not.

His current therapists are keeping their same days and hours. They work afternoons. We have 5 mornings that a third, new therapist can choose from in the schedule. I have not heard one word. Not one–from the provider. The other therapists were told that there was going to be a new third therapist. I was told the same. None of us have seen anything or heard anything. When I ask for answers, I get crickets. CRICKETS, people! Chirp, chirp. Chirp, chirp. 

Today I sent an ultimatum. Give me schedule info, or I’m sending Tate to 4 days of ESY..and I expect a provider on the days that he is not in ESY. I gave her all of those days. We will see what happens. Also? While I have been dragging my feet on finding a new ABA provider…this is proving to me that I need to do it…no matter how uncomfortable this makes me feel. Ugh. 

So, I am lining up my shot…and trying to get out of the rough. Hopefully I’ll get to that nice, lush, flat, smooth-sailing place soon. 

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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