A family's story

Posts tagged ‘Changes’

Med Rollercoaster

It’s been a busy and hectic few days. On Friday, I talked to Jake’s teachers, and then checked in with his psychiatrist. The doctor really feels that Jake’s pronounced tics were driven by high anxiety. The day that he experienced alarming tics at school was a day that: (a) both his homeroom and resource teacher were out of school, (b) another child in his class experienced high anger issues, resulting in a thrown desk in class, (c) a substitute lost utter control of the class, (d) Jake had spent the night in a new bed that he was afraid he was going to fall from.

After talking to the psychiatrist about what we and the teachers were seeing with Jake at school and at home, he suspects that Jake’s dose of Focelin XR was not high enough. We start low and ramp up as needed. As such, we are doubling his dose. He takes 10 mg, twice a day now. We will go see his psychiatrist on Friday, 2/22 to check in. We started the higher dose on Saturday. With the new dose, over the past two days, I have noticed less impulsive behavior, and less perseveration. I’m hopeful. I will check in with his teachers on Thursday to see how the first few days at school go.

Later on Friday, I took Tate for his tri-monthly check-up at his psychiatrist. He’d been on Vyvanse, 30 mg a day for about 12 months. Lately we’d been noticing less focus, more impulsivity, and unfortunately, more opposition and weepiness. One of the negative side-effects of Vyvanse is depression. The doctor tried to ask Tate, twice, if he was feeling sad. She tried to have him identify the emotion by using pictures, since he couldn’t answer her question. When she asked him to point to how he was feeling, he pushed the card away. Because we can’t be certain if he’s truly sad/depressed, or more frustrated because he’s struggling, we are going to try Focelin XR for a month. He’s at 5 mg, 2 times a day. We can call her back sooner if we are experiencing some significant issues…we should know in a few days whether or not the medication is working. He starts the new medication tomorrow.

Of course, because we are introducing a new medication, we have had a few days without medication. If I had any doubt that Tate’s meds were working, I got my answer. Yes…they were…at least a little bit. Oh. my. GOD. We have had 2 days of “Energizer-bunny Tate”. We haven’t seen this silly, out-of-control behavior in over a year…so I guess that is a good thing. I am nervous to see how he reacts to a new medication. I hope it’s an easy transition. I pray he does ok. I know he’s a little overwhelmed by his behavior…he is old enough and aware enough to know he can’t control some of the impulses..and yesterday was rough watching him struggle. He lost the battle, ending up on the couch with the weighted blanket completely covering him to try to relax himself. He was in bed early, and slept quite well, which indicates that he was completely exhausted.

This week is going to be a period of sit and wait. All I can do is…..buckle up, and sit down, because here we goooooooooooo…..

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Settling into Summer Routine

Summer vacation began last week. It was more like a watered-down version of our summer schedule, though. This week, the true test begins. We all have a new routine, again, and it’s throwing me off. I am such a creature of habit and LOVE my routines. When they are blown to bits, or changed significantly, well, I struggle almost as much as my boys do. I guess they come by the anxiety honestly.

I was up at 4:30 this morning. On my own. I can’t even blame my children this time. I had that sense of uneasiness that comes when routines change. It is akin to the start of the school year jitters I used to get as a kid. I laid in bed and dozed on and off for another hour and a half. Cole, my little alarm clock, went off at 6:00. “Mam! Mam! Mam! Mommy! Mommy! Mommy! Ma! Ma!….JA-AKE!” (Guess he knows that his brother is an early riser.)

I rolled out of bed and got ready for the day. Once I was put together, or, at least somewhat thrown together in a not-totally-haphazard-way, I got the kids dressed and we popped down stairs for breakfast. I got the coffee brewing, and put the tv on for the boys. I set about getting their breakfast of champions ready–cheeze-its and strawberries & blueberries. (Held the fruit for Tate, who informed me that my choices were “too squicky”.)

I was watching the clock, as Jake’s bus was coming to get him at 7:45. Down the block. Granted, as an “official” third grader, my son is more than capable of walking down the street to catch his bus. However, it was his first day, and his jitters were in full force. We managed to get down there with plenty of time to spare. Hubz stayed to help out today, which was greatly appreciated. Tate was all kinds of anxious about Jake going to school, and he kept telling us that he wasn’t going any where.

Once Jake was off to school, and Hubz left for work, Cole, Tate and I hung around. Tate was scripting quite a bit, but was otherwise okay. We had talked about day camp with him over the weekend. This morning he told me he didn’t need to go. I said he did, and he grunted at me and shook his head. Awesome.

Tate’s therapist showed up at 8:30 as we had planned. They worked on one of Tate’s programs before we left. I drove Tate and his therapist to the day camp location, which is about 3/4 of a mile from our house. We drove because Tate’s anxiety would have turned a 20 minute walk into a 40 minute walk. I briefly introduced Tate & his therapist to the teacher. Then I left. To say I had butterflies in my stomach is an understatement. More like a flock of geese.

Cole and I burned an hour at the park. It was sticky. I was sweaty. But we ran around, climbed up ladders, stairs and slid down slides. I pushed Cole on the swings. We had a fun time. Once we hit the hour mark I played the concerned Mom card and said we needed to rehydrate…and he was ok with that, as long as we got to watch Scooby Doo. It was a deal.

We had to get Tate and his therapist at 11:30. When I got to the building, I made sure to stay out of sight. One glimpse of me, and Tate would have bailed. The class was singing a song that I recognized from Tate’s repertoire at school. I was able to sneak a glance of him getting jiggy with it in the classroom. I was glad he was enjoying himself. When I asked his teacher how he did, she said, “Ohhhh, he did greaaaaat! See you on Wednesday!” I asked his therapist. He did pretty well, considering it was a new place, several children and staff he didn’t know, and was loud. He parallel-played with peers, and even commented on a few things his peers said during class–appropriately. He colored his rainbow picture with a proper grasp. He needed prompts to switch colors during coloring, and to not stim in the sand in the sensory table in the classroom. He scripted a lot during the day, and had minimal flapping. He needed some prompts on the playground, but did ok. I’ll strike this up in the “progress” column. A year ago, this never would have been possible, even with an aide.

As we waited for Jake to get home on the bus, Tate’s afternoon therapist arrived. She waited with us, as Tate refused to leave the bus stop without Jake. The transition back to home and therapy did not go well. He had a 15 minute meltdown. We don’t see those often, but when we do, they are exhausting–for everyone.

I’m a little nervous about this afternoon. Jake will have his math tutoring at 3:30. Another transition. Another place. Tomorrow after his afternoon ABA therapy, Tate has OT. This is Jake’s last week of lacrosse, but he has practice on Wednesday and Thursday, and a tournament on Sunday. And Tate has day camp again on Wednesday and Friday..and on Friday, I believe he will be going solo, as the therapist who is supposed to work on Fridays isn’t quite ready yet. It has me incredibly annoyed with the director of our ABA therapy. How do you work with autistic children for 20 years and not understand why a parent is beside herself because the therapy schedule has a huge gaping hole?!

In 4 weeks we change schedules, again. Summer school will be over, and Jake will do full-day, full-week day camp. Tate will be done with his day camp. I’ll be potty-training my stubborn youngest child. The fun continues…..

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