Meds

A quick recap: Joseph had been on Adderrall. At school he started getting more and more violent. His pediatrician prescribed Risperdal. He took it for a day and a half, then I read about all the possible side effects and decided that we needed to rule out all other options first. And I read that Adderrall can cause irritability, so I took him off everything for a week. He was a little extra hyperactive at school, but guess what? He went from serious biting incidents 4 out of 5 days, to a single minor attempt to bite ONCE the whole week that he was sans meds!

Kristy has been the one taking him to the doctor for meds. I have been encouraging her to inquire about the non-stimulant meds, Strattera and Invuniv. They started giving us sample packs of Intuniv (the pharmacy said Joseph's Medicaid will not cover it?). He's been on it for about a month and a half and other than falling asleep at inconvenient times, he's doing great! We got Maria on Intuniv last week, and the improvement in her behavior is amazing. The Adderrall and Focaline worked for her, but they would wear off. The Intuniv she takes once a day, and that seems to be enough. When she goes back to school, I think her teacher won't recognize her. :)

Since we got his Medicaid approved, we've gotten home health aides to work with him. Two started a couple of weeks ago and it's been really great for him to have someone more energetic than me around to play with him. :) We need to get the third aide in place, then we go on Children's Hospital's waiting list for an ABA coordinator. But more about that later.

A Short Update on Meds

The day after my last post, I read that Adderrall can cause irritability. We took him off of it (and the Risperdal) immediately and the violent tantrums all but vanished. After a week, we went back to his pediatrician and told them we wanted to try a nonstimulant ADHD med. they gave us a starter pack of Intuniv.

He's been taking it for two weeks now, and the violent behavior has not returned. Unlike the stimulant meds, Intuniv takes a while to start working, but I think it's helping. We need to talk with his teacher and see if she thinks this dose is helping enough.

Final Progress Report for the School Year

We got Joseph's final progress report for the year yesterday. He did very well in some areas, mastering several new skills. The least progress was in the speech section though, which I consider the most important right now.

It's discouraging. Though when he started school, he barely spoke at all, he's not improved as much as was expected.

One good piece of news though: Dublin doesn't have "special ed" classrooms. Their special ed program is inclusive. So when Joseph goes into Kindergarten, he'll be in a typical classroom with whatever supports we (his parents and his IEP team) decide are necessary for him to be successful (probably an aide). This is a big departure from my own experiences 20 years ago, when I was basically warehoused in a special ed classroom except for "specials," gym, music and art, until half-way through middle school.

Not much to say about his IEP. It's stuff like "Will greet and close with prompting 4/5 times" and stuff like that.

We don't know when the EIBI program through Children's will get rolling. We're going to try to put together something for the interim, especially since summer break just started.

Two new things we're going to be trying this summer, Therapeutic Listening and ADHD meds. We're still trying to find the right meds for Maria and we were going to wait until we got it worked out with her first, but Joseph's lack of concentration really is holding him back so we're going to talk to the pediatrician about trying some different stuff and we'll see how it helps him. When more than half of his 30 minute speech therapy appointment is spent struggling with him, trying to coax him into cooperating, it's difficult to make progress.

I've been skeptical about Therapeutic Listening, but I've heard good things about it from other parents so we're going to give it a shot when Joseph starts his next OT session in a few weeks. One thing I'm pretty sure about though, I don't believe that it's necessary to use their "special" equipment. If another set of headphones can deliver the same frequency range, I don't see why they wouldn't work. Anyway, it won't cost anything to try it out initially so it's worth a shot. I expect that if it works, it will work fine on an iPod too.

So we charge optimistically into summer. We'll do what we can and see what progress we can make with Joseph at home to better prepare him for the next school year. I haven't been posting much because I haven't felt there was anything to post about. Hopefully, the new season and new efforts will bring new things for me to write about. Keep praying for us. :)

Updates

It's been almost a month since I've updated so I'm going to try to piece together enough cohesive thought to merit a new entry.

I'm undecided about the Adderall's effect on Maria. We had the initial dosage of 5mg increased to 10mg. She's still having the same trouble at school though, and if anything she's gotten more mouthy at home.

I got a new doctor that takes our new insurance. I told her that the citalopram isn't working as well as it had been, so she put me on Abilify too. That made me exhausted all the time, so she switched it to Welbutrin.

We've been working to get Joseph's ABA program set up. In fact, Kristy and Celia go to their first aide training session tonight. We're having trouble with the funding though. As I previously mentioned, we had planned to use a Medicaid funded program, Healthchek to pay our aides as home health aides. Unfortunately, because Joseph has Caresource instead of the Medicaid that people on disability have, this is causing a problem. Caresource can (and apparently usually does) refuse requests for HHA's for kids. We're applying for disability for Joseph (which we should have done months ago) and in the meantime we'll do what we can to get his program started.

His speech continues to develop, making noticeable progress every week. He's perfectly comfortable verbalizing choices, like cereal or oatmeal etc. He's even initiating appropriate speech sometimes. We're very excited and encouraged by this. But we're impatient and he can't learn fast enough to satisfy us. His mother and one of the aides at school think that he can actually read already. At the very least, he can recognize his classmates' written names.

His behavior seems to be getting worse at times though. In fact, I've got a big scabbed-over scratch on my nose that is very distracting to me, courtesy of a temper-tantrum. This afternoon, he was bouncing all over our bed and kept jumping on me. We rolled him up in a sheet, which he loved, and he sat still for the rest of the video he was watching. We'll have to experiment with this.

My father-in-law has accepted that Joseph is autistic. We visited over the weekend for his graduation, and I overheard him talking about Joseph's autism to several people, which was relieving. I don't exactly know why, but it was extremely frustrating for me to hear him denying Joseph's condition. I probably felt that if he didn't believe that Joseph's behavior was a result of autism, then it was my shortcomings as a parent.

That's it for now.

A Difficult Decision

I haven't updated in a while. It's mostly been more of the same. Joseph is doing well in school. He's making  slow but certain progress. The iPad has been a tremendous boon. I'm going to be writing about how they're using the iPad in his classroom at school, but this will require some research to do it justice.

One new thing, that tangentially (at the moment) involves Joseph is his sister's ADHD diagnosis we received on Wednesday. It was expected, but what we didn't expect is how much Kristy and I have moved away from our insistence on trying non-medical interventions first. I've always been a big critic of prescribing medications to children to treat long-term psychiatric symptoms. But the psychologist who evaluated her said that therapy would not be helpful yet. And my kids have ADHD because I have ADHD, it's neurological, like my depression, which I spent years in denial about, which kept me from getting medicated. See the thought pattern here?

So we've decided to try medication for Maria to control her impulsive and oppositional behavior. If it doesn't work, we'll just stop. If it DOES work, then we'll know that the medication is what she needs to help her be successful in school and in life.

How this effects Joseph, if it works for Maria, we're going to try it with Joseph too. He's talking more and more, but we frequently can't understand him because he's talking so fast and the words run together. He won't stay focused on an activity that isn't of his choosing (which is also a symptom of ADHD) and with an unofficial diagnosis for his father, and an official diagnosis for his sister, I think it's safe to say we understand what the problem is. So we need to get him calmed down so we can make better, faster progress.

Kristy was previously even more set against meds, particularly stimulant meds. After Wednesday though, she was as ready as I was to put Maria on them. The behavior chart at school has been helping, but improvement has leveled off and sometimes slips. It's not getting any better.

I know the potential problems in later life associated with the stimulant meds, but I really feel that without the meds they do not have the chance to succeed, no matter what else we do for them. This gives them that chance.