Author: Amarinsk Abels
Almost four years to the day is when we found out my brother Bergtlef’s diagnosis of DYRK1A. He was 30 years old at the time. After receiving his diagnoses, things fell into place. It turned out he didn’t have hundreds of different disabilities; they were all just part of this one thing. A genetic disorder that led to various other symptoms. But has this diagnosis changed anything for us? No.
‘Now we know’, our father said when I asked him what he thought after finding out the diagnosis of DYRK1A. It didn’t really mean anything to us since we’d already gone through pretty most stages in life with Bergtlef.
When he was born, in August 1987, the ignorance of the paediatrician resulted in him saying that my brother had Down syndrome. Purely because of his single palmar crease. When our father mentioned that he had one single line on his hand as well, the doctor had nothing else to say. To him, this was it. As it turned out, it wasn’t. Nor was he “a dog you can teach tricks.” Something another so-called professor told our father. Even hearing about this made me feel furious, let alone our dad at the time. Our parents filed a complaint and the doctor was reprimanded for his behaviour at the time.
Fortunately time passed and even though this was a very hard thing to hear, it also turned out not to be true either. The journey with my brother has had its ups and downs and some things he never learned, but some of our “tricks” have helped him to grow.
As with most people with DYRK1A, Bergtlef has a smaller head (microcephaly). This was established at a young age, when our parents found out that he was behind in his development. They realized this as they were comparing him to my sister and I. As babies, we would start turning in our playpen at some point, but my brother would just keep still. Our dad said that you could come back an hour and a half later and he would still lie the same way. After a visit to the general practitioner things started to snowball.
Bergtlef as a baby
My brother was referred to a place where they tried teaching him (and us) sign language, as he didn’t speak until he was about 6, but that didn’t really work for him due to poor motor skills. So they started using Bliss symbols, something that turns out is actually more difficult than the pictograms we use nowadays, and one way or another, it sparked his use in language.
He received speech therapy and motor therapy and at a much later time in life he had creative therapy because of several traumatic experiences. He was taught to ‘stand like a king’, to stand up for himself because he had been bullied and even threatened with a knife as he was walking towards the bus station after school.
Bergtlef learned how to go to school by bus, after years of going by school taxi, to improve his independence. At the time I was studying and had some time to spare, so I would go with him and study while he was in school. I remember the time when he ran into the awning at school, while I was there. He hadn’t seen it properly (severely myopic) and the architect had apparently thought it was a good idea for these things to come down too low… So we ended up in the hospital, which was just around the corner. He was such a trouper! Just as he had been when he was really young and had fallen down on a car park and a car actually drove over his arm. The lady was in horror over what had happened that she couldn’t move a muscle anymore and the car had literally stood on top of his arm. Other shoppers came to the rescue and were able to tilt the car so we could get my brother out. All he had was a broken arm.
I have lots of stories about my brother growing up, as you can imagine. And as I continue to write, more keep springing to mind. A hilarious one is when he asked the cashier, a pretty young girl, if she had a boyfriend. Of course she didn’t know just how to react and I was flabbergasted as well! Or the time when there was a special needs outing in a discotheque and I had lost him and found out that he was breakdancing on the dance floor! He had never ever done something like that before (and hasn’t since either) and fortunately there was someone with a camera: so we have proof!
Bergtlef showing his moves on the dance floor
We never assumed that Bergtlef couldn’t do something and as it would come to light that he indeed didn’t understand or couldn’t carry out a task, we would adjust. That is why he was never really treated any differently because we just did what could be done. We accepted Bergtlef in the way that he was, because otherwise wouldn’t life become very stressful indeed?
One thing that may have well caused our parents stress must have been the idea of what would happen in the future. Something most of you will think about as your child grows up. Because ‘normal’ children will flee the nest at some point but how about a child with special needs?
After watching a documentary about a 36-year-old disabled man who still lived with his 80-year-old parents, our parents eyes were opened. As the parents in the documentary got sick and unable to care for their son, they tried to figure out what to do with him. Where could their child go? While this was a documentary, we actually knew of a similar story close to home. One of Bergtlef’s school bus drivers had a son with Down Syndrome who still lived at home too, while the chauffeur was already in his sixties and he planned to always look after his son.
Now, Queen’s question ‘Who Wants To Live Forever’ may be answered with ‘I do’ for some people because can you really trust someone to take care of your son and daughter, just as well as you do? It is an immense question that is very difficult to answer (probably because the answer is no), but there is no eternal life just yet, so we have to deal with things as they are.
Our parents wanted to make sure my brother would be well taken care of so they decided to set up sheltered housing accommodation. In the year 2000 they started talking with other parents of disabled children, obtained advice and found a healthcare provider. Meanwhile the housing association had a wonderful location available and the architect told them they would be able to make this suit this new target audience.
Fifteen young people aged between 18-25, all with some sort of disability, would be future tenants of a new-to-be built flat. Bergtlef (and most of the other residents) saw the flat take shape and he even got to turn the first pile into the ground; a very special occasion.
Ten years after the idea was first put forth, the flat was finished and we were able to decorate Bergtlef’s home, just as he wanted. We’d gone shopping together and he chose almost everything for his apartment, like his queen sized bed, just in case one day he would end up finding a girlfriend (like the cashier perhaps)…
Bergtlef helped dig the first pole of ‘his’ sheltered housing accommodation
Ten years on, my brother doesn’t have a girlfriend, but he still lives in his apartment. Over the years we have definitely found out that there certainly is no one who can care for your own child (or in my case, brother) better than you. Even though our parents chose this particular care provider because they thought they were different, they weren’t. Our family has always been and will always be very hands on because we want the best for Bergtlef.
So much hands on that my sister and her husband took my brother in for weeks on end just last year because when we were in lockdown due to Covid-19, things didn’t go too smoothly at the sheltered accommodation. While he stayed with them, he bonded immensely with our now 2-year-old niece and he became a much happier and active person. This and other negative experiences with the caregivers, led my husband and I to really look into houses with a bit of land so we could accommodate Bergtlef in a unit that would be attached to the house. We were all very excited about the opportunities but unfortunately it all fell through and Bergtlef is still in his apartment. He does feel that his apartment is his house, but he isn’t always happy with the carers. This has led to heated discussions between the care provider and ourselves. So who knows what will happen in the future, perhaps Bergtlef will move somewhere else at some point. Perhaps we will take over the sheltered accommodation. Perhaps. For now we can pass on and share our worries but also our responsibilities.
Life is always a journey. We’ve spent most of that journey without my brother’s diagnosis and now that we know, we haven’t actually changed anything. The information regarding DYRK1A may be helpful for carers but as we’ve been going through life with him, we understand all there is to understand when it comes to my brother.
Not one person is the same though, and your stories may differ slightly or immensely. And of course there are so many things that I haven’t written about, like how do you travel with someone who has various (dis)abilities, how do you cope with loss? We’ve been through lots of things in life so perhaps I can answer (some) of your questions personally.
Please feel free to contact me if you think I may be of help.
Bergtlef now: He has excellent computer skills, even though he cannot read, but apart from gaming he also has countless other fascinations like checking out pictures of feline, face painting & costumes (this all started after watching the musical The Lion King in theatre a long, long time ago), trains, books, traveling…et cetera.