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11.08.2011

How do we know good choices from bad when parenting a child with ADHD?

I live in search mode these days, ever since my son Luke, age nine, was diagnosed with ADHD in 2008. I am searching for the medication, therapy, classroom accommodation, product that will make his life with learning disabilities a little easier. I guess you could say I'm searching for the magic bullet, but I don't think that's really accurate anymore. It was true the first year or two -- I was looking for an "answer," something to erase his ADHD symptoms. Then I realized that that "something" doesn't exist. I didn't think I was looking for a cure for ADHD because I knew that's not possible, but that's exactly what I was searching for nonetheless.

My focus in my search now is different, more refined. I am searching for tools to help him compensate for his differences, for environments where he can learn and prosper, parenting methods best suited to his needs, treatments that teach him the skills necessary to have a happy, successful life despite ADHD (and dysgraphia, SPD, Executive Functioning Deficits, and a gifted intelligence). This search is intense and stressful for me, his parent. There's a lot of {self-inflicted} pressure to be diligent to find all opportunities and to make choices that will only have positive outcomes. In the area of making appropriate choices that lead to positive outcomes, I have failed miserably this year.

Luke has struggled in school since the day he walked into kindergarten. Yes, the very first day. While it should improve each year with treatment, maturity, growing self-awareness and a diligent advocacy for accommodations and resources in school, it has not improved for Luke. I feel like we have been standing in the same place for three years, paralyzed, while the world continues to move on all around us. In our minds, we're moving and working, but we're getting nowhere.

That feeling of helplessness became overwhelming to me earlier this year. I fought hard with the school but mostly we just received lip service. I watched Luke struggle to fit in an environment that was clearly the opposite of what he needed. I knew he needed more help. I had to find that for him.

I began a search for a school more suited to his needs. His current mainstream public school was a fine school with very nice teachers and administrators, but they weren't able to give Luke what he needed. He needed a school with active learning, a school that understands invisible disorders like ADHD, SPD, and Executive Functioning Deficits, he needed to be reminded how smart and wonderful he is, not  {inadvertently} reminded that he's very different.

I put Luke into the enrollment lottery for two local charter schools and I applied at two private schools, one specifically for language-based learning disabilities, and one that was just small and focused on experiential learning. Luke didn't get selected for the charter schools (there were only a few openings in each entire school). We were turned down for the LD school because the director felt he would be bored there in remedial math and reading when he only had an LD in writing. But he was accepted to that small private school with an emphasis on experiential learning and science, we'll call it School Oh-No from here on.

Luke was ecstatic he was going to attend School Oh-No. Daddy and I were ecstatic too. The school looked so great Luke's big sister was very jealous. We couldn't afford the tuition in full but received a payout from a worker's comp injury Daddy suffered the year before, just enough to bridge the gap between the annual tuition and what we had to spend on it. It was exactly what we had wished for. It seemed like fate falling into place the way it did. Luke's teacher and I discussed his needs in length the day he came to hang out in her classroom before being enrolled. And I submitted all evaluation reports as well as his former 504 plan and IEP with the application. Everyone understood his needs and were confident they could handle it at School Oh-No... or so it seemed.

Things began falling apart at School Oh-No the first week. Luke kept telling me everything was great, and he was happier than I'd ever seen him, but his teacher began painting a different picture. "He needs a personal assistant," she said. "He requires someone be with him, guiding him through things, at every moment. I don't feel qualified to teach him." The first week of class at School Oh-No I was told the teacher didn't feel qualified to teach my son.

Now, if I hadn't been so blinded by hope, I may have seen right then that it wouldn't work out with School Oh-No. I was blinded though. I put a plan in motion to determine appropriate accommodations and share them with the school. I met with his two teachers once and then it escalated to a meeting with the headmaster and the admissions director. The Headmaster was very positive in that meeting, acknowledging Luke's different needs with very educated and clear understanding. My hope shone brighter. Then, just a week later, I was asked to meet the group again that week, a week earlier than the originally agreed schedule. I immediately felt sick. I knew all too well what was coming.

On October 20th, just two months into his fourth grade year, Luke was kicked out of School Oh-No. I sat down at the table that morning and began to get my notes out from our last meeting. They watched me intently. I settled then noticed no one else had even a pad of paper. The tension and stares forced me into a slump in my chair. I laid my pen gently on the table -- I wasn't going to need it. The admissions director said, "we can't teach Luke here."

I felt my emotions welling out of control so I interrupted her and warned her that I was going to get very emotional and it couldn't be helped. She went on to recognize that I had given them adequate information on Luke's needs during the admissions process as the Headmaster looked for some tissues and brought back some toilet paper. I held that small strand of toilet paper to my wet face as they went on about how Luke needed a private teacher and we should find that for him. Who could afford that? I screamed in my head. Certainly not this family. They went on very coldly, showing no emotion, telling me all the problems with Luke and how they could write some sort of letter for his school if it would be of any benefit. I couldn't speak. I could barely keep from blubbering like a child. A piece of me broke into bits and was left right there at that table. I was being told me child was "too disabled" for something and that cut deep.

Luke never returned to School Oh-No after Daddy picked him up that afternoon. He was devastated. He loved School Oh-No with all his heart. Despite not being able to accommodate his special needs, it was the perfect school for him, and he knew it. I was clear with him that leaving School Oh-No was not a choice that Daddy and I made. I didn't want him to blame us for his pain. I also made it clear to him tough that he did absolutely nothing wrong, and he didn't -- he was just himself.

I asked School Oh-No to refund our entire tuition on the grounds that we entered the enrollment process with full disclosure and they did not (their parent handbook, not provided to us until after school had started, stated that they don't teach special needs children). They sent the check.

Luke stayed home with me for a week to recharge and to give a new medication time to settle. He went back to the public elementary school he had attended the last three years last week. The school welcomed him with open arms. His teacher has a grown son who is twice-exceptional with a high IQ and dyslexia. She is also very strict. We are having a few glitches but I feel better about the potential for this school year there than years past. Luke is happy there. Just as happy as at School Oh-No it seems. You see, we discovered in a session with his therapist the day before he was asked to leave School Oh-No that Luke was suppressing extreme feelings of inadequacy in that environment because he loved the exploration and intense science emphasis. So it all balances out in the end.

What doesn't balance is my guilt. I worked like a pit bull to find an alternative educational experience for him. I fought when we didn't have the money for it. I made it work even though I knew it would mean some tough financial sacrifices for the entire family. I put Luke in a situation that ultimately lead to very intense heartbreak. I hurt him instead of helping him with this decision. For that I am having a really hard time forgiving myself. Good intentions just aren't enough sometimes.

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.