PARENTS OF CHILDREN WITH ASPERGER SYNDROME: EXPERIENCES & TIPS

Siblings Jannik (12) and Emily (7) have Asperger's syndrome, a form of autism. Her mother Michaela * (43) tells us what this means for her family life and how she copes with everyday life with two sick children.

I love her infinitely. But sometimes when I wake her up and look at her tired faces, I wish the day was over again. I am there for Jannik (12) and Emily (7) 24 hours a day. If I'm lucky, I can still drink my coffee after getting up. After that, the morning routine begins: making breakfast, helping with dressing, straightening school bags.

Outbursts of anger in Asperger syndrome

Sounds normal, do you think? Yes, but that's not all. Even if I always do my best, it sometimes happens that I make a small mistake. And then hell is going on! When the holes in the waffles are not properly filled with Nutella, the laces are not properly seated, or the school bag is not properly packed, my children go crazy.

They swear, hit, scratch, kick, bite and choke. Not just me or each other, but also yourself. When the outburst of anger is over, they move to the agenda as if nothing had happened. Life with my children is a challenge every day because they have a pronounced communication and contact disorder. You suffer from Asperger syndrome .

Nobody wanted to believe the mother

Jannik was three when I realized that something was wrong. He was always afraid of something else. When he stopped walking as soon as he saw something green outside ("The nettles are chasing me!"), We got psychological support. But we kept hearing the same thing over and over again: Our son bullies us. He has a firm grip on us. We would not raise him strictly enough.

Suspected autism

The following months, when we cracked down, only made things worse. Jannik freaked out more and more. It was enough to just give him something other than waffles with Nutella for breakfast or pasta without sauce for dinner. I was certain: it has nothing to do with tyranny! There is more to it than that! But nobody wanted to help us.

Diagnosis explains a lot

Only when Jannik wanted to kill himself did we get a hearing. That was three years ago: We were on our way to school when Jannik noticed that his water bottle was missing in the sports bag. When we didn't stop at the supermarket to buy a new one, he threw himself in front of our car after he got out. At nine!

Only after this incident was he tested for various diseases and disorders - and we finally got a diagnosis. It may sound strange, but I cried tears of joy when I learned that Jannik has Asperger's Syndrome. We finally knew what he was missing! Finally we could help him! His therapy began shortly afterwards.

Asperger was also found in the daughter

With my daughter, then four, it was getting more and more difficult. Suddenly she started to hit herself and lose control. We thought we had paid too little attention to her because of Jannik. Then we thought she would imitate her big brother. But at some point she began to abuse us more and more vulgarly. I had to google some words because I had never heard them before. A few weeks ago we learned that Emily also has Asperger's syndrome. This time I cried real tears.

The disease is very different

Both are autistic - and yet very different. It is particularly problematic for Jannik that he only eats five dishes and stands in the way of everything else. Emily, on the other hand, does the biggest theater when dressing. Although I spend a fortune on clothes, we can hardly find anything to wear. Every piece of clothing hurts her. Cuffs are the worst. I just say: Have fun buying socks and underpants!

Different forms of the disease

She has no friends at school. Children have already visited us, but then they ordered them around and were not allowed to touch their toys. Jannik in turn has a large circle of friends. He is adaptable, goes to football and is often invited to others. Outside of his own four walls, he would never freak out. If it simmers inside, he keeps it inside until he comes in the front door. Emily doesn't know anything there. She insults and hits me in public too.

Therapy helps

Her therapy will start in a few weeks. I hope we can get their behavior under control. At Jannik, the meetings made a big difference. He has been going to behavioral therapy for two years to overcome his fears. In addition, an autism therapist comes to us once a week . With her he learns to talk about his feelings, exercises to be angry, without freaking out.

And it always works better. He used to freak out every day, but now it is limited to once a week - also thanks to the change of school. In the private school with only eight classmates, he is no longer flooded with so many stimuli. It is more regulated. It only gets dangerous when an hour is canceled or a substitute teacher takes over the lessons.

Everyday life tugs at the mother's nerves

I myself have been on sick leave for two years. In November 2013, my body started to strike. Burnout . It was all too much for me. It doesn't make it easier for me to be very perfectionist. The household must always be 150 percent right. I keep trying to keep my kids happy.

I would love to work as an administrative assistant again, but that is impossible. You can't leave them alone. Never! That would be too dangerous. Because when they attack each other, they know no limits. As hard as it sounds: you would strangle yourself. When I have got through the day and the children are asleep, I first lie down in the bathtub. This is my moment Then I fall into bed exhausted and tired, even if it is only 9 p.m.

Serenity helps to deal with the disease

I am glad that I get on with my husband so well despite the hardships. Sometimes we just sit on the couch, look at each other and laugh when the kids go crazy. We try to take it with humor. Because in therapy we have learned that we should not keep them from calming them down or calming them down, but rather calmly waiting - if that is of course possible.

This is what the mother of children with Asperger syndrome wants

If only we had our own ball pit. If they lie between the colorful plastic balls, they are the most peaceful beings on earth. Because they need a lot of contact with their environment because they feel their bodies weaker than others. Therefore, they constantly rub themselves against chairs or people and can never sit still. Even if they float in the water, they are very happy. Those are the moments that I recall when I pray in the morning that it will quickly be evening.

Difficult to understand the feelings

If I could wish for one thing, it would be to be able to slip into the skin of my children. I know that Jannik can't stand the smell of a banana and socks cause Emily pain - but I can't understand it. See my world with your eyes, hear my sounds with your ears, feel my things with your hands, eat my food with your taste, wear my clothes with your sensations, experience my fears with your perception and fill my head with your thoughts - I would like to experience all of this one day so that I can give my children even more support and support. It is an arduous journey that we have behind and still ahead of us. And sometimes I want to give up and get on the next plane. But that is out of the question.

* Name changed by the editors

Information and facts

About life in a peculiar world

Asperger's syndrome is an autistic development disorder that begins in childhood and is associated with marked abnormalities.

Strengthen weaken

An estimated 0.9 percent of the population is affected by the syndrome. Most sufferers are normal or above average intelligent and have a specialty. However, you cannot put yourself in other people's shoes. They cannot interpret looks, gestures and irony. They have a strong need for what is expected to happen and are rigidly attached to habits. Children easily get tantrums if they deviate from everyday routines. Several factors are believed to favor Asperger syndrome. Genetically inherited abnormalities are said to be one reason for the deviations in the formation and growth of the brain.