Lots of news…

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.

So I sent Luke to school today with 36 mg of Concerta in his system. I was supposed to drive to a neighboring county and scout out some commercial properties for a client today but I decided to stay close to home to be available if Luke and/or the school needs me. I am always terrified when giving him new meds or new doses. In the past I have gone to school with him for at least a few hours to see how he does. However, he has been really clingy to me lately and it is starting to become an issue so I thought it was best he went on his own like the big boy he is today. Of course, I sent a note letting his teachers know he had an increase in medication and I am available if there are any issues.

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…

COVER3D_400sq_bestsellAward-Winning Blogger. Freelance Writer. Author. Warrior Mom.
A self-described “veteran” parent of a son with ADHD, Penny Williams is the author of the Amazon best-seller about her parenthood in the trenches, Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD. She is also the creator of the award-winning website, {a mom’s view of ADHD}, a frequent contributor on parenting a child with ADHD for ADDitude Magazine and other parenting and special needs publications, and co-founder of the annual Happy Mama Conference & Retreat, a weekend away for moms of kids with neurobehavioral disorders. Look for her second book, What to Expect When You’re Not Expecting ADHD, in late 2014. Follow Penny at http://BoyWithoutInstructions.com.

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Related posts:

adhd and school, ADHD medication, classroom accommodations, occupational therapy, special education (IEP) ·

About the author

COVER3D_400sq_bestsellAward-Winning Blogger. Freelance Writer. Author. Warrior Mom. A self-described “veteran” parent of a son with ADHD, Penny Williams is the author of the Amazon best-seller about her parenthood in the trenches, Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD. She is also the creator of the award-winning website, {a mom's view of ADHD}, a frequent contributor on parenting a child with ADHD for ADDitude Magazine and other parenting and special needs publications, and co-founder of the annual Happy Mama Conference & Retreat, a weekend away for moms of kids with neurobehavioral disorders. Look for her second book, What to Expect When You’re Not Expecting ADHD, in late 2014. Follow Penny at http://BoyWithoutInstructions.com.

5 Comments

  1. Anonymous says:

    Penny,Can you provide an e-mail address where I can share my daughter’s story with you privately?Thanks!Mom of ADHD DaughterGreensboro, NC

    Reply
  2. Shane H. says:

    Wow! You certainly did have a lot to share. What an unsupported Behavioral and Developmental MD. Telling you you wouldn’t win an appeal? I realize he may be speaking from experience, but every child’s situation is different. I can’t wait until you win and are able to prove the MD wrong.The decreased appetite and weight loss is a biggy. My son has been so fortunate. His Focalin only affects his appetite for an hour or so after he takes it. He’s growing like a weed and eating fine. I know you’re thankful that the MD is keeping a close eye on this side effect.Chewing gum in his 504 is a great idea. I hope you can convince the team to approve it.I wish you the best of luck with your appeal. As I’ve told you before, your son is one lucky little guy… to have a mom who will fight for him. Keep your chin up. You know what he needs and what will enable him to thrive. I’m always here if you need a listening ear. Be sure and let us know how he did today with his increased meds. 🙂

    Reply
  3. HennHouse says:

    Swap out names and this could be my story with my sons. One on concerta. One on concerta AND focalin. No IEP for us either. Because they are “too smart.” HOWEVER, once at the proper, therapeutic dose, their classroom performance and behavior started to support the “too intelligent for an IEP” argument. One on the honor roll (still struggles in math). One with straight A’s. Appetite and sleep are challenges. For the lunch/no appetite issue, we work with the school directly. The boys eat alone, a teacher checks that they have eaten all of their lunch, and then they are permitted to join their friends. Seems to be working. We also serve big breakfasts, high calorie snacks, and HUGE dinners. That is when the boys seem most hungry.

    Reply
  4. @ HenHouse, so good to know we are not alone. would love to know what you use as high calorie snacks. His classroom performance is definitely leaps and bounds improved when meds are good. I think for Luke it’s all about slowing him down enough to be able to achieve. But allowing free movement in the classroom too (I am terrified we may encounter a teacher in the future that will not let him move freely in his own space!). Luke does get distracted when he eats. However, at home, with as little distraction as I can possibly create, his mind thinks about what he wants to go and do and he pretends to be full/finished to move on to something else. I am going to do my best to put some meat back on his bones in the next 2 months because the Concerta really is so good for him when it is working. The increased dosage does seem to be working. Glad to have you here!

    Reply

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The "ADHD Mommas" are not medical or mental health professionals, nor an ADHD coach. Any opinions shared here are just that, opinions. I, and the other "ADHD Mommas," are sharing our experiences with our own ADHD children. Please do not re-post or publish any content or photos without a link back to {a mom's view of ADHD}. Have the courtesy to give credit where credit is due. Copyright protected. All rights reserved.

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