I am going to start out the day by saying a word of gratitude. I am so grateful my son has a sweet, kind spirit. It is so uplifting when everything else is not. His smile really will light up a room. The news and updates I have today are not ideal. I am going to challenge myself to find something positive in each item though. The doom and gloom is exhausting.
I received a quick response to my email letter regarding appeal two days ago from the Exceptional Children Director. She outlined what I need to do for an appeal. She also offered to have other staff members review the reports and scores and meet with me to try to come to a resolution. I am very happy about that, despite not hearing from her again since agreeing. Luke's Behavioral MD burst my bubble on that one yesterday though...more on that in a moment.
Yesterday we had Luke's follow up appointment with the Behavioral and Developmental MD at the Olson Huff Center.
- He is very concerned about Luke's weight loss. He is down about 5 pounds now from his weight at his first appointment in late Nov. When his meds stopped being effective a few weeks ago he began to eat like a horse, like he was trying to make up all the food he didn't eat the first few months. I suspect if that hadn't changed, he'd be down 7-10 pounds.
- He increased his Concerta from 27mg a day to 36 mg a day. He felt that is likely to bring his ADHD symptom management back to the level it was when he first started the Concerta (he was like a whole new child and it was amazing, for him and everyone around him). However, he is again very concerned about his weight loss. He warned that the increased dose may again decrease his appetite. He asked me to call in to their office in two weeks to give them an update on the new dosage and I was pleased with that. Especially since they are like the McDonalds of Behavioral & Developmental doctors -- it is like going to the airport -- there are a lot of patients in and out of there every day. He also requested a followup in two months this time instead of four months to closely monitor the effect of the meds on his growth. He says if he continues to loose weight, he will go back to 27 mg of Concerta and supplement with Straterra and/or try a medication that will increase appetite. He prefers to only give him one medication if possible and I am very thankful for that.
- He looked at Luke's IQ test scores and the other testing the school did and asked me why I am appealing their rejection of the special education when he is so smart (what is it with everyone assuming an intelligent child will do well in the classroom?!?!). I told him I need the school to provide the OT. He, like an individual who makes good money and doesn't have to prioritize financial decisions, asked why we "don't just take care of that privately." I explained that I don't have the means to pay for it at this time. He told me I would not win the appeal -- Luke would not get placement in special ed just for a relatively small amount of OT needs. He couldn't even recommend an OT outside of his center (an in-network, not hospital-affiliated OT center would be a co-pay for us instead of a hospital visit and subject to huge deductible -- $200/month instead of $1,000/month. Still a hardship but a huge difference.) I am not seeing the silver lining in this one yet. I am super grateful that my son's disability and needs are mild compared to so many others!
- The incessant chewing is an outlet for his energy. For many kids fidgeting, rocking in their chair and doodling are enough. For Luke, he has so much energy that he can't expend at his desk and while being (relatively) still and quiet that chewing is another outlet for that. He couldn't recommend anything more than providing him with safe items to chew on. We both hope the increase in medication will resolve this problem again. Until then, we just need to give him many things to chew on and try to watch that he's not chewing on the wrong things. For Luke, being allowed to chew gum in the classroom would totally resolve this issue. I will certainly ask for that accommodation at the 504 Committee hearing.
The news wasn't ideal and I didn't get what I was hoping to hear, but I am glad that I am not being told what I want to hear just to pacify me or make me back down. I continue to seek the best for my child...
Penny Williams is the creator and editor of {a mom's view of ADHD}. She is also a freelance writer, real estate broker, wife, and mother of two living in Asheville, N.C. She has published several pieces in ADDitude Magazine, the #1 national publication dedicated to ADHD, and has also been quoted in Parenting.com's Family Health Guide on ADHD and The High Desert Pulse article, When Ritalin Works. When not writing, she can usually be found behind a camera.