Dear ones, we recently had a mum who told us about her daughter’s dyscalculia (read more here). As a result, Heike got in touch with us, whose children both have reading and spelling difficulties (LRS). This is quite stressful for the whole family, as she tells us here:
Dear Heike, you responded to our article on maths difficulties. You have two children who have dyslexia. Can you tell us when you first noticed something?
My two children are 12 and 9 years old. We noticed at the end of Year 1 that my son’s reading speed and accuracy were very different from other children in his class. I wasn’t too worried at first, as we were in lockdown for almost half the school year and each child has their own learning speed. Towards the end of Year 2, I noticed that he was very bad at dictation. But not with the words we had learnt. But rather with the filler words to form a sentence from the learning words. The beginnings of sentences were also usually written in lower case.
Learning to read went a little better with the little one. Her motivation certainly played a big part in this. Nevertheless, we noticed that it was slower and more error-prone than with other kids in her class.
Who and when did you approach to raise awareness and share your thoughts?
A standard LRS test is carried out in the middle/end of Year 2. According to his teacher, this was normal. However, it became increasingly difficult for him from Year 3 onwards. He could barely keep up with reading and completely lost interest in it. His writing didn’t improve either.
I spoke to the teacher about it and also told her that we have dyslexia in our family. Unfortunately, she didn’t take me very seriously and said that not every child can do well at school. In my son’s case, it really was the case that his performance differed greatly from the other subjects, which was really noticeable. We had several conversations with the teacher up until the end of Year 4, but she always dismissed my suspicion of dyslexia.
At the end of year 5, I approached my new class teacher, who was also a German teacher. He listened to my concerns and took my son’s exercise book home with him over the holidays to take a look. In the end, he finally arranged for an LRS test at the school office.
And with your daughter? How did it go there?
It went very differently with my little girl. At the end of Year 1, we had a parents‘ meeting in which the teacher praised her performance and motivation. It was noticeable, however, that she had problems with the phonics table in German lessons. I asked whether this could be due to dyslexia.
The teacher was puzzled by my question. On the one hand because it really was the first sign, and on the other because parents don’t really want to know anything about this topic. The teacher promised to keep a close eye on the whole thing. In the middle of Year 2, the school’s LRS test followed, which was conspicuous. Her reading speed and accuracy differed greatly from the performance of the other children. She was later tested at school by an employee of the education authority.
What was the reaction from your family to your suspicion that your children have Dyslexia?
Everyone in the family suspected it right from the start, as we have dyslexia in the family. We were also well informed on the subject and knew the signs…
What did the diagnoses do to you?
The big boy was only diagnosed at the end of year 5. It was a relief for all of us, but especially for our son. He always thought he was too stupid for school and suffered a lot as a result. Now he knew why he was struggling.
What do your children find particularly difficult, how pronounced is the dyslexia?
Both kids find it difficult to read texts in „normal“ time and to understand what they have read. They need more time because they read more slowly and with errors. They have to work through texts laboriously. They cannot memorise the spelling of words so quickly. They have to keep spelling strategies constantly in mind. But they don’t have the time in everyday school life. This results in many spelling mistakes.
You told us that it’s all a huge strain on the nerves. What exactly is so stressful?
The nervous strain is very high because we parents are plagued by fears about the future. Will the kids manage to get a good school-leaving certificate so that they can find a job later on? Some of the grades are still poor because the compensation for disadvantages is lacking or inadequate.
Both children go to dyslexia therapy, which is very time-consuming. In addition to the children’s sports and other commitments such as work and school, this is sometimes almost impossible to manage. What’s more, dyslexia is unfortunately often equated with low intelligence in society. Our children are often labelled as „stupid“ and are even asked to attend a special school. However, dyslexia has nothing to do with a child’s IQ.
And it’s not easy financially either. Tell me about it.
In Saxony, we offer the opportunity to attend an LRS class for two years. In these 2 years, the 3rd grade is split into 2 years. There, the children are supported in a different way and given lots of strategies. This type of schooling was no longer an option for the older child as he was diagnosed too late. The little girl was not given a place in the class as she was not one of the „hardship cases“.
Normal German tutoring should not be chosen in the case of diagnosed dyslexia. You really need therapists who know what the problems are and what they look like in particular. Without having Dyslexia, it’s impossible to imagine the confusion in children’s heads as soon as they see letters. We therefore looked for an institute that has trained learning therapists.Unfortunately, these therapy costs are very high. We pay 550 euros a month for 45 minutes a week. You can apply to the youth welfare office to have the costs covered. You go through application after application, children’s sessions with child psychologists selected by the youth welfare office, observation sessions in schools in German and English. It takes about 1 year from application to decision. The youth welfare office only covers the costs if there is a recognisable risk to the child’s mental health.
We didn’t want to go through this whole process for several reasons. Our big boy was begging us to finally „rest“. He had his diagnosis and was fine with it. It was all a heavy burden and he didn’t want another marathon. That’s why we’re now paying for everything ourselves and this monthly financial burden is sometimes very painful. We have used up our savings and are now living on a reduced budget to be able to pay for the treatment.Both children have already made progress in this therapy. The little one much more than the older one. According to the therapists, however, this is because he was diagnosed too late, for which I clearly blame the teacher at the time…
What would you and her need in order to be relieved immediately?
We definitely need financial help. The older one would actually have to go to therapy twice a week to fill in the gaps. But we simply can’t afford that.
We should also take a fresh look at the issue and ask ourselves whether the youth welfare office is the right place to cover the costs. It is a recognised partial performance disorder. It cannot be cured and the school system should address it. We families are left alone with it. Unfortunately, the reimbursement of costs by the youth welfare office is also very arbitrary from district to district.
We are always dependent on help because of the therapy appointments and the journey there. Every week, every day has to be planned. Before the diagnosis, I actually wanted to work a few hours less so that I could organise everyday family life better. I work full-time and definitely can’t cut back because of the costs.What does all this do to the children and you?Of course, we try to minimise the stress for the kids. But that’s difficult. School and therapy are always an issue. If a child is spontaneously ill, I have to cancel and don’t get reimbursed for the lesson. If it’s a public holiday, therapy is also cancelled without compensation.
We are always happy to hear from other children with dyslexia to normalise the issue. Our little 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 can do another part-time job to cover the costs. I’m thinking about where I can cut costs. My mind is constantly racing and I find it hard to switch off.
What do you want for the future?
We would like to see an overhaul of the help for children with such partial performance deficits. We would like financial help to enable the kids to get the help they need. You feel very bad as a parent if you can’t help the children the way they need it.
We want society to realise that our children are not stupid. There are even many famous scientists who also had Dyslexia.
At the moment, what we would most like to see is fairer compensation for disadvantages in schools, including in final exams and in the A-levels. Unfortunately, compensating for disadvantages is always a matter for teachers and every school year we have to wait and see how which teacher handles what. For my older son, spelling mistakes in geography were sometimes taken into account. But my son doesn’t know and can’t remember how to spell Rhone/Rohne/Rone. It’s made really difficult for the kids. I think that many teachers don’t know enough about Dyslexia. This should be covered more in teacher training programmes.
