I’ve shared before that my youngest has some health issues. He’s been diagnosed with Chiari Malformation, which means his brain is not quite the right shape and it sometimes puts pressure on his spinal cord, causing a host of strange symptoms. Along that journey, he’s been poked, prodded, and had multiple sedated MRIs. All of that led to severe anxiety about doctors and we landed in counseling with a wonderful lady who specializes in kids with medical PTSD.
Our time with her was wonderful and helpful but one day she looked at me and said, “I need you to know that I have worked with many kids and I have never encountered a five year old with less ability to stay on task than your son. I would strongly suggest he have neuropsychological testing for ADHD.”
I smiled, but internally rolled my eyes. He’s homeschooled! What good would a diagnosis do us? Teachers in overcrowded classrooms need a diagnosis. A mom at home doing math with her own child on a couch doesn’t. I was certain of that.
But then… I started noticing how difficult school was becoming. He’s in first grade and I believe first graders should spend most of the day playing, so I limited his school time to 45 minutes. But I began noticing how LITTLE we could cover in 45 minutes. Sometimes just half a page of math, reading one poem, and doing something in his “fun stuff” pile, like a maze or dot-to-dot. Each day, it seemed we accomplished even less. And each day, it seemed his anxiety about doing anything at all was increasing.
I sighed and decided maybe the counselor was right. Perhaps testing was the way to go. At least some insight into how his brain works could help me choose curriculum better suited for his needs.
And so began the craziness to get him an appointment for testing. Here’s the thing. If a child attends public school and an issue is suspected, testing is done. Boom. Easy. But for home schoolers? I’m not sure if our experience was unique, but it was far from simple.
First I had to tell his neurosurgeon that I thought he needed testing. She put in a referral at a great place about two hours from home. But I never heard anything. So at his six year old well-child check up, two months later, I asked the pediatrician to put in a referral. He put in a referral locally for us. And I never heard from them.
So I started calling myself. The local testing location said they’d be glad to get him in and could even get him in soon–September is slow for them because school just started and the referrals from teachers haven’t started making their way in yet. However, our insurance wouldn’t cover it at their location and I’d have to pay the full amount (several thousand dollars) up front, because he was not enrolled in public school. Yikes.
So I called the place that was further away. And left a message. And called again the next week and left another message. I had been hearing that this place booked appointments a year out and I couldn’t even get a phone call in to schedule something a year away! I was near tears over it. School was getting increasingly difficult. I was suspecting dyselxia as another issue.
Finally, FINALLY in October (we had started this process in April!) we got a call back. And they could get us in for testing in DECEMBER! So much sooner than I anticipated (although it was eight months from the first referral!).
The December day finally arrived and I was scared, nervous, and excited. We had told him that it was a doctor but there were NO NEEDLES, NO POKES, NOTHING SCARY. SO he was a little nervous but not too much compared to what he’d normally be like. The office had given us clear instructions on what to expect:
- We would be there all day–approximately eight hours.
- The adults would need to bring something to do to fill the time because we would not be in the room during his tests.
- We should bring some quiet activities to do with our child while he was on breaks.
- We should pack snacks and water to keep him fueled.
When we arrived, we were welcomed immediately and taken to the testing room to help our son settle in and get comfortable. Two people would be working with him all day so he wouldn’t have to worry about changing people or anything like that. The assistant stayed in the room and played games with him for about an hour while the doctor took us in another room to discuss any issues we’d been seeing. This was VERY thorough. She went over everything from his birth through that morning! His entire medical history, his strengths, weaknesses, interests, dislikes, any issues we’d noticed, any concerns we had, etc. It was very relaxed and honestly it felt good to have someone finally ready to listen to what was going on. So many people in his life had brushed it all off as him being disobedient or me being a lazy mom who didn’t discipline enough. And I knew neither of those were the truth. And this doctor listened and nodded and smiled, and said she was so glad we had decided to come in that day.
From then until lunch, our little guy worked with the doctor and the assistant. He came out for breaks to give us a hug and chat every hour or so. He got an hour break for lunch, and then got back to work.
When the testing was complete, we were called back. Again, the assistant played with him while we talked with the doctor for another hour or so.
She gave us a lot of immediate feedback so we could work on things with him immediately and not have to wait for her report. He as officially diagnosed with anxiety and ADHD–but she saw no signs of dyslexia.
She explained that anxiety and ADHD fuel one another in a vicious cycle. He realizes that he is having trouble focusing, which makes him anxious. The anxiety makes it even harder to focus, which makes him more anxious. She gave us some suggestions on ways to help dispel his anxiety, such as visual charts of what he needs to do next so that he never has to worry about how much longer school will take and that sort of thing.
The thing that stood out to me the most was that she said she was so thankful we had brought him in at such a young age. Most parents either don’t notice or brush it off and wait to bring kids in for testing until they are much older–and much harder to help. Early intervention is a big part of helping them succeed in school and in adult life later on.
A few weeks later, we received a very thorough written report with all of his test results and pages and pages of ideas and suggestions for ways to work with him to help make school work not such a struggle. There were no suggestions that he should attend a traditional classroom (something I was scared about happening) and full encouragement to keep doing what we were doing, while trying out some new techniques to help him focus more. The report said that if we tried everything and were still struggling immensely, then we should get in touch to consider medication. So far, we have not reached that point.
We did make him a visual schedule for school so he knows exactly what our plan is each day.
I bought him a kid’s garmin watch that monitors his activity and his sleep–I know that if he gets less than 10 hours of sleep, his focus is trash. Knowing how he slept helps me plan our day better and set us both up for a peaceful school time. It also counts his minutes of activity and his steps–and he gets rewarded each day he gets 10,000 steps, because I know that the more energy he burns, the better he focuses when it’s time to sit down for school. It’s been a tremendous help for us.
I plan to post again at the end of the school year about how the changes we have made are helping us. In the mean time, if you see any struggles in your home schooled child, go for testing. It’s worth it. Having that report available to reference on hard days has been a wonderful resource for me. You may think “I know my child, no one else is can tell me how to help him” (I sure did) but the reality is that people who work with kids with attention issues all day every day do have a lot to offer you. It’s worth it!