I learned an interesting sailing term recently — “in irons.” When you are in irons, you are sailing against the wind so directly that the boat stalls and is unable to maneuver. You are stuck, to put it quite simply. It requires calculated maneuvering to recover movement.
ADHD currently has our boat in irons. For three years now, we have been doing everything right and yet, we still haven’t experienced much forward momentum when it comes to the treatment and management of my son, Luke’s, ADHD.
- We have had two thorough neuropsychoeducational evaluations;
- We removed artificial colors and most artificial flavors from his diet;
- We determined he has a gluten sensitivity and removed gluten from his diet;
- He has high-protein breakfasts through supplementation with nutritional beverages like Boost or Ensure;
- We go to counseling every 2-3 weeks;
- Luke went to occupational therapy for more than a year, trying programs like Interactive Metronome and Tomatis in addition to general OT for proprioceptive input and attentiveness;
- I’ve fought at school to secure appropriate accommodations for his ADHD (as well as Dysgraphia);
- and Luke takes medication, trying every single stimulant now except one (plus many other types of meds and supplements), hoping to find one that will work for him for more than a couple months at a time.
I’ve read just about every book on ADHD and we’ve stayed on course just as it’s mapped — we’ve done just about everything we can.
And yet we’re in irons.
And I’m exhausted and weary.
I’m still pushing forward though. I’m determined to turn this thing around and help Luke catch his tailwind, finding a place of ADHD maintenance rather than constant searching for answers.
On the medical front, we’re pushing boundaries, mostly our financial boundaries, but also conventional medicine.
I had a phone consult with Dr. Charles Parker, of CorePsychBlog.com, because he studies why these medications aren’t effective for some individuals. He assured me we’ve done everything right so far but now it’s time to dig deeper into Luke’s physiology to discover what makes the medications hit the therapeutic window only sometimes and with little effectiveness. “It’s always a metabolic issue,” he says, so we’ve taken the next step in testing and had a Hair Tissue Mineral Analysis done at his urging (we had already done the food sensitivities test, IgG). Detailed results are forthcoming next week but the summary showed that Luke has lead and mercury-induced anemia and is malnourished (not because I don’t feed him enough or the right things but because his body is not able to process the nutrients correctly).
In the next week or two I’ll know how to begin treating his heavy metal and mineral imbalances with a tailored diet and supplement plan. In a few months we’ll know if this is the key piece of the puzzle to solve the mystery of why traditional medication treatments have been ineffective for Luke. My fingers are definitely crossed. I am beginning to wonder how long we can work to solve this mystery.
Dr. Parker also suggested we add Risperdal in a low dose to Luke’s regimen (currently 36 mg Concerta) to keep school from falling apart so badly it can’t be recovered. It has actually helped him engage more than anything, surprisingly not helping irritability much.
School. Argh! The bane of my existence. Truly. I spend more energy on trying to achieve school success for Luke than on anything else, even more than on my businesses at times. The emotional distress I endure from trying to get school staff to understand and accept my son’s challenges, to work with his differences instead of against them, is mind-numbing. I even went so far as to enroll him in a small private school despite not knowing how we’d pay for it, and that was the worst school experience yet.
Now back at public school for a few months, his teacher firmly believes that if he does less work than his peers, he’ll learn less. She believes that he must continue to take tests and quizzes in multiple-choice, written format or he won’t be able to pass End of Grade tests and move on to fifth grade (you don’t have to pass EOGs to move to the next grade actually, and I had the principal tell her so in our last IEP meeting).
Last week we had the first IEP meeting since Luke returned to this public school November 1st. In mid-December, I probed the teacher to find out what Luke’s grades look like after receiving a mid-term report basically stating that Luke needed improvement in all academics and in all behavior areas. It took 2-3 emails of asking directly if Luke was going to receive any Fs on his report card to get her to answer the question. And the answer was yes, in Reading.
Reading? What?! How is that possible? This kid has an IQ in the 130s, he reads on a sixth grade level (in fourth grade) according to their benchmark testing, and his learning disability is Dysgraphia, a disability of handwriting and written expression, and he has an F in Reading? How is this possible? If this smart, kind kid has an F in Reading, the school is FAILING him.
The main reason for the F was that he had failed every single reading comprehension and vocabulary test (both based on reading different passages). I asked Luke to give me more info about these tests and quickly realized he didn’t have the level of executive functioning skills required to complete this test format correctly. These tests are four pages of multiple choice and three written questions. That’s not the hang-up, it’s that they have to go back to the text to find the answers. Luke can’t read a question, move over to the book and look for the answer, remember what he’s looking for while searching, then remember the answer and where he was in the test to mark the answer. This is far too much for him to handle from an organizational standpoint but also with poor working memory.
With that information, I quickly notified his Special Ed teacher and asked for an IEP meeting as quickly as possible. Now, IEP meetings terrify me. It’s a room full of people against little ole’ me. These meetings have historically never gone my way. In first grade, he was tested and denied special ed inclusion. In third grade, he was retested and granted special ed inclusion for writing, for the Dysgraphia. But he only had one goal, based entirely on writing mechanics and, no matter how many IEP meetings I called and how hard I fought to convince the group of his deeper struggles with executive functioning disorder, the IEP never changed. We would discuss ideas and accommodations with majority agreement and then nothing was ever implemented. None of these ideas were ever added to his IEP document so I couldn’t fight for implementation.
For this meeting I brought in my own experts to back me up. Last year, I was told in an IEP meeting that “it’s obvious you love Luke very much.” This was their way of saying that my expectations were to high because I was biased, that I was looking for perfection being blinded by love. Every accommodation I asked for had turned up in my research, they were wrong about that, but it didn’t matter because I am just his Mom. I was determined to have these recommendations come from outside professionals rather than just his Mom, hoping they’d carry more weight with a professional backing them.
Luke’s therapist, Ms. Karan, attended the first half of the meeting, trying to reason with Luke’s teacher about the fact that no matter how hard he tries or how much he’s pushed, he’ll never be able to match his peers in all aspects because he has a “brain disorder that can’t be changed.” I also had a report from a Special Ed teacher turned Educational Advocate who looked over his existing IEP, his current schoolwork and grades, and spoke to me about his strengths and weaknesses to develop recommendations for Luke to be able to achieve academic success. It was distributed to the full IEP Team (classroom teacher, two special ed teachers, gifted teacher, principal, school OT, school social worker, our private therapist, and me) in advance of the meeting.
This strategy seemed to work. While none of us in the room could convince Luke’s regular ed teacher that he needs modified assignments and testing, it was added to his IEP nonetheless (was already in the draft when we arrived at the meeting) and she’s being forced to comply (yes, forced — I’ve already had to speak with the principal once about this, just a couple days after the new IEP was drafted). Now, in addition to his goal for writing mechanics, he now has a goal for organizational skills and a plan to help him develop these skills. As well, he has many accommodations:
- Full Testing Accommodations: Last year this was only for End of Grade testing but it now applies to all testing. Accommodations include: testing in a separate room (he goes to resource/special ed for ALL tests and quizzes), modified test formats (done by special ed teachers because regular ed teacher disagrees with need), multiple test sessions, mark in book, and use of chewing gum (which is actually allowed throughout the school day for him).
- Modified Assignments: he is allowed to do less volume of work, enough to show he knows the material but not so much that it takes him a lot longer to finish his work or so much that it overwhelms him. (The regular ed teacher is adamant this is going to cause him to learn less but it just isn’t so.) This includes homework: he does about half what everyone else does in order to keep homework to one hour a night. It is at my discretion what he does in that hour as long as he reads for 20 minutes, practices multiplication tables, and does at least some of the math worksheets (we do every other problem). The principal backed me on this during the meeting.
- Extended Time: Luke is allowed extra time to complete tasks as needed.
So, I guess you could say we’re not technically in irons on all fronts anymore, as we were just two short weeks ago. We have made definite movement in the accommodations Luke receives at school, hopefully toward academic success. But I’m still working diligently on other aspects, like treatment, to position our boat to catch a tailwind. We all need some rest.