Diagnosis: Dysgraphia – Struggling Against my Ex AND the System

Diagnosis: Dysgraphia - Struggling Against my Ex AND the System

My son was experiencing some difficulties learning to read.  He had been in the same day care since age one.  When I left my ex he was two and a half.  My ex worked 12 hours shifts, and to avoid conflict during our divorce, I gave in to his request to take my son out of care early on the days he was off.  Then he started to get him there late on the other days.  It was difficult on those days for him to get a consistent amount of time with his preschool teachers.  And there was a lot going on with lawyers and my new daughter and everything else.  I knew there were some issues with his learning.  He could sing the alphabet song but didn’t seem to grasp the relationship to written letters.  His teachers pointed to a speech issue – so I arranged speech therapy.  He figured out how to count and seemed to be able to handle basic math.  I was working with him at home on his letter identification.

When the time came to put him into kindergarten, I looked at the system and decided it wasn’t in his best interests.  He would have been attending school Monday, Wednesday, and every second Friday.  On the other days, he would have been in day care.  And as my work hours exceeded the school hours, he would also need to attend before and after care intermittently on days he wasn’t with his dad.  And the schedule with his dad was just a mess.  He was taking him on “his” days, as well as picking him up in the afternoons on days that were mine while I was still working.

The program at the day care was Reggio Emelia based and covered kindergarten concepts.  Their learn by play program excited me and seemed to engage my son.  They had identified some issues with his focus, but given the issues that we were experiencing at home and bouncing between two houses, it wasn’t unexpected.  He enjoyed when we read to him, but he didn’t seem interested in book learning.

I’d Make Excuses

I’d make excuses.  He was a boy.  Sometimes they’re slow to learn.  All children learn at different rates.  I continued to work with him at home, kept up with what he was learning at day care and hoped for the best.

We had the car accident that year.  I was a lot worse for the wear, but the children seemed to have gotten through with no ill effects.  I saw many doctors.  I asked them all what to look for.  I saw no symptoms.

And then my son started Grade 1. And he struggled. When my husband and I spoke to the teacher, we understood. He was a little behind. It wasn’t unexpected given the circumstances. He was referred to an occupational therapist. He was given extra help with reading and writing.  We asked if a tutor would help – and she said wait.  He’d catch up.  At the end of Grade 1, he wasn’t doing that bad.  He appeared to be catching up with his peer group.  He was doing ok with math.  His handwriting was improving with the help of his OT.  We worked with him through the summer. Reading all the time. Flash cards. Word walls. Writing lists. Encouraging literacy.

And Then He Started Grade 2

And then he started Grade 2.  This class was a Grade 1-2 split.  I thought it would help.  If he was a little behind, then surely he would benefit from the parts of the Grade 1 curriculum he was exposed to.  The repetition would help.  We worked with the teacher again.  She suggested some strategies.  We asked if a tutor would help.  She said we should wait.  He’d catch up.  She would keep me in the loop.  Keep working with him.

He started a second session with the OT.  He was in a handwriting group and reading group at school.   He had a reading buddy.  I filled his room with books, I put up an alphabet chart, we had five word wall decks.  We continued reading to him every day we had him, as I had started when he was little.  I encouraged him to read.  I helped him celebrate his successes.  When he read “Green Eggs and Ham” all the way through by himself (even though I suspect he’d memorized part of it), I teared up.

And then, in January, my ex e-mailed me and said that he’d talked to the teacher and “they’d decided it was time for a tutor”. At first, I was upset. Why would the teacher impart this information to him without discussing with me? I was the primary caregiver. I was keeping in touch. She knew the difficulties I was having with my ex. And I’d asked about a tutor less than a month before. I was angry. My ex implied that I wasn’t keeping on top of it. It was my fault because I’d made the decision to keep him out of kindergarten. It was my fault because we’d had a car accident and there were unresolved issues that I hadn’t seen or addressed. I was worried.  Was our lifestyle affecting his ability to learn? The hectic custody schedule and the constant tension? Was the car accident to blame and I hadn’t seen it? And then I realized that all of that anger, all of that worry and upset—it wouldn’t help. It wasn’t addressing the problem.

I Requested a Meeting

I requested a meeting with the school’s special education team. I was refused. He hadn’t been diagnosed with a learning disability. The principal didn’t want to meet with me without my ex present. I knew he was part of the problem and would just get in the way. I needed a one-on-one with the principal. She had met my ex. She should have had an understanding that our relationship was very high in tension.  Still she refused. So I agreed to a meeting with the principal with my ex present, against my better judgement. It took three months for her to set up the meeting.

In the meantime, the teacher seemed focussed on getting him diagnosed as Attention Deficit. Her son had the same issue. I read about ADHD.  I was very wary of diagnosing him improperly.  He could focus—I had seen it. When working one-on-one, he did very well. I also knew that he wasn’t getting enough sleep at his father’s house. That his father was overdosing his asthma medication, which could cause some hyperactive behavior. I worked on convincing my ex to fix these problems. That didn’t work.

My ex pushed to get him diagnosed ADHD. Thank goodness my doctor listened. And she understood that the symptoms we were seeing could just as easily be the result of a learning disability, or the lack of sleep and overmedication, or our hectic custody schedule. She suggested some other avenues.

We Got a Tutor

We got him a tutor. Once a week. It wasn’t enough—so I suggested twice a week. Thank goodness my ex agreed.

I sought changes to the custody schedule. We tried mediation. It didn’t work. So I agreed to arbitration. The new schedule (to my surprise) gave my ex a little bit more time—bumped him to 50%.  But all exchanges were to be done at the school.  I would rarely have the opportunity for there to be a tense exchange anymore.  It wasn’t perfect, but it was better than it was.

My son’s occupational therapist noted some core weaknesses. We discussed whether or not physiotherapy would help. I talked to my doctor about it. She recommended it. A course of physiotherapy was recommended to help him with his handwriting. I asked around to find a good paediatric physiotherapist. I had enough physiotherapy after the accident that I knew who to ask and what to look for. I made the appointment—and got him on a strict (at least at my house) regimen of core exercises.  We enrolled in swimming and soccer. We worked on general physical fitness—running to the park. Swinging on the monkey bars. Cycling.

I explained the issues to his eye doctor. He’d had an astigmatism that I’d noticed and was monitoring since he was an infant. I pushed for a diagnosis. He had a paedatric opthamaologist who didn’t listen to my concerns. I’d changed doctors when he was 5. The new doctor had previously said that the astigmatism was equal in both eyes—and given he seemed to be able to focus ok, didn’t recommend glasses. When I explained the issues he’d been experiencing on this visit, we decided glasses was the best option. Only for reading.

I Read. A Lot.

I read. A lot.  I talked to my friends. I had a few who’d had their own experiences with learning disabilities and the school system.  I knew he needed help and given the problems we were seeing, I wasn’t sure that the school was addressing them all.

A friend suggested a neuropsychological assessment. She had a friend who had one done on their daughter, and it had helped to convince the school to provide him with the assistance she needed.

I did some work to find a psychologist. I arranged for him to go.

We Finally Talked to the School

And just before that appointment, we finally had our meeting with the principal. It went just about as badly as I expected. My ex used the meeting as an excuse to spew his venom. It was my fault. Why didn’t I send him to kindergarten? What about the car accident we’d had. Why didn’t I follow up on that?

I kept my cool. The teacher explained what she’d seen. Pushing further for an ADHD diagnosis.  I explained the steps we’d taken so far. The principal said the school could refer him for a neuropsych, but it would take at least a year to get it done. And they needed to do a Woodcock Johnson assessment first—to see if the neuropsych was necessary.  To this day I’m still not sure why it hadn’t been done several months prior.

I think she was a little shocked when I said I’d done my homework, and given the issues Jack was experiencing and the fact that we had private insurance, I’d made the decision to go ahead with a private neuropsych and he had an appointment booked the following week. We agreed that the school would wait for the result before determining what (if any) action was needed by the school.

Private Testing

I had the neuropsych done. To avoid overtiring him—the testing was done over three appointments. I told them that one of the three would be arranged on the day after his dad had him. I wanted control over the other two. I hoped that they would see what I saw when he returned to my house. A tired kid. Focus issues as a result. My ex did not disappoint even though he was aware of the appointment beforehand.

The teacher, my ex, my husband and myself all filled out questionnaires. Surprisingly, the ex and I were pretty close in our observations. No surprise, the teacher’s assessment suggested ADHD.  My husband and I met with the psychologist and discussed our concerns and my son’s behaviour. My ex met with him as well. I suggested that given the reading I’d been doing, I had observed some similar behaviour in my ex. I knew that he’d struggled in school. I also knew that being left-handed (as I am), and tall and lanky (as both my ex and I are), core strength and stability in addition to living in a right-handed world were affecting him. My ex, for his part, suggested that all of his problems were my fault. No kindergarten. Car accident. He even suggested that my son had broken his arm. (Actually, he didn’t.  He complained of some pain the day of the accident and was x-rayed—there was no break. He felt better a few days later. And it was his right arm, not his left). And of course my ex said he’d never had any problems in school. I don’t think he remembers that I’m left handed, otherwise I’m sure that would have been my fault too.

I don’t quite understand how a narcissist convinces himself that this is helpful, but so long as it isn’t his fault I guess. Really, it’s all about him anyway.

I pushed for a non-ADHD diagnosis. I told the doctors that if there was a chance that some of his issues were exacerbated by the ex’s lack of a sleep schedule and overmedication, I wanted the opportunity to resolve those issues before resorting to medication. I was hoping that if enough people told my ex that it was an issue he’d take it to heart.

Diagnosis: Dysgraphia

The testing showed that my son was dysgraphic. It’s a “learning disability in the category of written expression”. In addition to issues with coding and decoding words, my son has issues with the physical process of writing.  The psychologists were fantastic—they provided me with a full report filled with recommendations.

We had separate meetings for the results. Even though the report didn’t cover it, my ex continued the accident, kindergarten, your fault song. So we met with the mediator. My mediator said it was the best assessment she’d ever seen. She explained the report to my ex in non-psychology terms. She explained that those issues was not to blame, that genetics were in play.  We discussed next steps—continuing therapy, tutoring. We talked about over-medication and sleepless nights.

I took the assessment back to the school feeling a sense of achievement. It wasn’t so much that my feelings were verified—but more that we had an idea of where to go. That word “dysgraphia”—gave me something to focus on – to learn about – to work with.

My son is in Grade 3 now. He’s been officially “labelled” by the school and referred to the special education team.  They’ve put together a plan to help him, to accommodate his disability. I meet with them regularly. We adjust the plan when needed. I’ve pushed them to push my son. I want him to learn how to write. I don’t want him to use the computer all the time. I want him to know how to spell. On his own.

The glasses has helped. His handwriting, with the help of his OT has improved. He’s been discharged. He continues with his physiotherapy and we continue to work on his exercises.  He sees the tutor consistently. His reading and writing have improved. He gets extra help on tests. I push him. I push the school to push him. I push his father to push him. I push him to push himself.

We’re Moving Forward

The school has separate meetings with us now. They seem to have come to an understanding that together doesn’t work. They certainly understand that I make the decisions and treat the meetings with my ex as “information only”. They’ve worked with me to push him to do the extra work at his home. They’ve parroted my suggestions that the children need more sleep.  That one hasn’t worked. But I can report that he’s actually reporting less use of my son’s asthma meds since the meeting with the mediator. Small steps.

It’s not perfect. I still have to regularly ask about accommodations for tests like math. They don’t always have the time or the staff to help him. But when he can answer the number questions and gets stuck on the language of the problem questions (still ending up with the right answer but not being able to write down how he got there), I know they’ve missed something.

I try to keep my focus on the end game. My ex still sings the song occasionally, I’m getting better at ignoring the tune. And when last month he suggested that it was thanks to him and the school and the Grade 2 teacher that Jack was doing better, I didn’t disagree. Not because it’s true, but because it’s not all about me. It’s about my son.

Live by Surprise

Live by Surprise

Want Live By Surprise in your inbox?  Click here to join our mailing list or follow Live by Surprise on Twitter, Google+, Facebook, InstagramPinterest and Bloglovin for the latest updates!
Live by Surprise

Latest posts by Live by Surprise (see all)