My Kids Have Dyslexia. They're Not Stupid.

Hi everyone! Recently we ran a piece with a mom who told us about her daughter's struggles with math (you can read it here). After that, Heike got in touch. Both of her kids have dyslexia, which in Germany is called LRS, short for Lese-Rechtschreib-Schwäche, or reading and spelling difficulty. It's a heavy load for the whole family, as she tells us here:

Dear Heike, you reached out after our article on math difficulties. You have two kids with dyslexia. When did you first notice something?

My kids are 12 and 9. With my older one, we noticed at the end of first grade that his reading speed and accuracy were way off from the other kids in his class. At first I wasn't too worried, because we were in pandemic lockdown for almost half the school year, and every kid learns at their own pace anyway. By the end of second grade, it was clear he was doing very badly on spelling dictations. Not on the words we had practiced, though. It was the little filler words, the ones he needed to build a full sentence around the practice words. He also usually wrote the first word of a sentence in lowercase.

Reading came a little easier to my younger one. Her motivation definitely helped. Still, we could tell she was slower and made more mistakes than the other kids in her class.

Who did you go to, and when, to raise it and share your concerns?

Here in Saxony, a standard dyslexia screening is given in the middle or at the end of second grade. According to his teacher, his came back normal. But starting in third grade, things got harder and harder for him anyway. He could barely keep up with reading and lost all interest in it. His writing didn't improve either.

I talked to his teacher about it and told her that dyslexia runs in our family. Unfortunately, she didn't take me very seriously and said that not every child can be good at school. With my son, his performance really did stand out compared to his other subjects. It was obvious. Through the end of fourth grade, I had several conversations with the teacher, but she kept brushing off my suspicion of dyslexia.

At the end of fifth grade, I went to his new homeroom teacher, who also teaches German. He took my concerns seriously and took my son's binder home over the break to get a better look. In the end, he finally arranged a dyslexia evaluation through the regional school authority.

And with your daughter? How did it go for her?

It went completely differently with her. At the end of first grade, we had a parent-teacher conference where the teacher praised her performance and her motivation. But she did mention that our daughter had trouble with the phonics chart in German class (the one where kids match letters to the first sound of a picture word). I asked whether that could be dyslexia.

The teacher was surprised by my question. Partly because it really was an early sign, and partly because parents usually don't want to hear about this topic. She promised to keep a close eye on things. In the middle of second grade, the school's dyslexia screening came next, and this time it was flagged. Her reading speed and accuracy were far from what the other kids could do. Later, someone from the school authority came to her school and tested her there.

How did your family react when you suspected your kids had dyslexia?

Everyone in the family suspected it from the start, since dyslexia runs in our family. We had also read up on it and knew the signs…

What did the diagnoses do to you all?

My older son wasn't diagnosed until the end of fifth grade. It was a relief for all of us, but especially for him. He had always thought he was too dumb for school, and he suffered a lot because of it. Now he finally knew why things were so hard for him.

What do your kids struggle with most, and how severe is the dyslexia?

Both kids have a hard time reading texts in a "normal" amount of time and understanding what they've read. They need more time because they read slowly and make mistakes. They have to labor over every text. They can't memorize how words are spelled very quickly. They have to keep reminding themselves of the spelling strategies again and again. But in everyday school life, they don't have that kind of time. So they end up with a lot of spelling mistakes.

You told us the whole thing is an enormous strain on your nerves. What exactly weighs on you so much?

The strain is huge because we parents are plagued by worries about the future. Will the kids get a good enough diploma to find a job later? Their grades are still sometimes bad because the accommodations (in Germany, called Nachteilsausgleich) are missing or inadequate.

Both kids go to dyslexia therapy, which takes a lot of time. On top of their sports and our other obligations like work and school, it's sometimes barely doable. And then there's the fact that, sadly, society often equates dyslexia with low intelligence. Our kids get called "dumb" a lot, and people have even said they belong in a special-needs school. But dyslexia has nothing to do with a kid's IQ.

And money is tight too. Tell us about that.

Here in Saxony, kids can attend a special dyslexia class for two years. During those two years, third grade is stretched over two years. The kids get supported in a different way and are given lots of strategies. For my older one, this kind of schooling was no longer an option, because he was diagnosed too late. My younger one didn't get a spot in the class because she wasn't considered one of the "hardship cases."

Once dyslexia has been diagnosed, you shouldn't go with an ordinary German tutor. You really need therapists who know what causes the problems and what they look like in each case. If you don't have dyslexia yourself, you absolutely cannot imagine the chaos in these kids' heads as soon as they see letters. So we looked for an institute with trained learning therapists.

Unfortunately, the therapy costs are very high. We pay 550 euros a month for 45 minutes a week each. You can apply to the youth welfare office (the Jugendamt) to have the costs covered. You go through application after application, sessions for the kids with child psychologists picked by the youth welfare office, and classroom observations in German and English at their schools. From application to decision takes about a year. The youth welfare office only pays if there's a visible risk to the child's mental health.

We didn't want to put ourselves through that whole process, and there were several reasons. Our older son begged us to finally let him have some "peace." He had his diagnosis and was fine with that. It had all been a huge strain, and he didn't want another marathon. So now we pay for everything ourselves, and that monthly expense is sometimes very painful. We've used up our savings and now live on less so we can afford the therapy.

Both kids have already made progress in therapy. My younger one, much more than my older one. According to the therapists, that's because he was diagnosed too late. I clearly blame his teacher at the time for that…

What would you and your family need to feel relief right away?

We clearly need financial help. My older one really should go to therapy twice a week to close the gaps. But we simply can't afford it.

We also need to take a fresh look at this and ask whether the youth welfare office is the right place to cover these costs. It's a recognized specific learning disorder. It can't be cured, and the school system should respond to it. Families are left on their own with this. Unfortunately, how much the youth welfare office reimburses is also very arbitrary from county to county.

Because of the therapy appointments and the drive there, we always depend on help. Every week and every day has to be planned out. Before the diagnosis, I actually wanted to cut back my hours a bit to organize family life better. I work full time, and because of the costs, I definitely can't cut back.

What does all this do to the kids and to you?

Of course, we try to keep the kids from feeling the stress. But it's hard. School and therapy are always on the table. If one of the kids suddenly gets sick, I have to cancel, and I don't get the session refunded. When there's a holiday, therapy gets canceled too, with no make-up.

We're always glad to hear about other kids with dyslexia, to help make it feel normal. Our younger one suffers a lot from being "different." She cries a lot and says she just wants to be "normal" and not have dyslexia.

I'm thinking about whether I could take a side job to cover the costs. I'm thinking about where else I can cut expenses. My thoughts spin around and around, and it's hard for me to switch off.

What do you wish for in the future?

We wish for an overhaul of the help for kids with learning difficulties like these. We wish for financial help so we can give the kids the support they need. You feel awful as a parent when you can't help your kids the way they need.

We wish that society would get it: our kids are not dumb. There are even plenty of famous scientists who had dyslexia.

Most of all right now, we wish that accommodations at schools would become fairer, including on final exams and in the upper grades leading to the Abitur (the German high school diploma and university-entrance exam). Unfortunately, accommodations are always up to the individual teacher, and every school year we have to wait and see how each teacher handles things. With my older one, spelling mistakes were sometimes even counted in geography. But my son doesn't know and can't remember whether the Rhone is spelled Rhone, Rohne, or Rone. They really make it hard for these kids. I think many teachers don't know enough about dyslexia. It should be covered more in teacher training programs.