When we speak about a person who somehow deviates from the norm, we tend to underline how that person – despite his or her diagnosis – can read, do math, or sing so extremely well. How a child who has the same diagnosis as our son can speak and write fluently in two languages. How another such child was fully potty-trained by the age of 2, and so on. These things are surely a cause of joy for everybody. We like to share hero stories. We need them. But I am going to share a hero story that is a bit different.
The child laughs happily, his half-moon eyes screwed up. My own heart beats so hard it could be jumping out of my mouth.
– You must not run away like that. You may get lost or be run over by a car, I pant squatting down next to him and holding back tears of relief.
The child inclines his head and takes hold of my hand. Barefoot we slowly pad up toward home, and I feel my breathing gradually slow down. At the front door the child gives me a questioning look.
– Let’s go home and have a snack, I suggest.
– Yes, please, he agrees happily.
He is already thinking about the here and now, while my own thoughts still linger on the horrifying possibilities of what could have happened when he ran off on his own. What IF something had happened? What IF the neighbor had not stopped his car in time? The free show of worst-case scenarios continues to play in my mind, though I am able to act calmly.
When we go visiting friends, I run my eye over their home. The stairs are OK, the road has very little traffic – but oh, the small children of the other visiting family are playing on the floor. And although my husband and I take turns keeping an eye on our son, he manages at some point to make a bloody scratch on the little girl’s cheek. When asked to do so, he happily apologizes, but I keep asking myself: Why? Why does he sometimes hurt smaller children? Only a few years ago, when he was about 4 years old, he was himself still playing on the floor, a charming little boy with lovely eyes. Afterwards, I quietly speak to him about the incident. He presses his hands over his ears and withdraws into his private world, curled up on the floor. I sigh and gently stroke the stubborn curve of his back. How I wish I had more understanding with you, I think. Dear Heavenly Father, give me enough wisdom to live with this child, I plead in my evening prayer.
When we talk about people who deviate from the norm in some way, we too often generalize.
– Down people are so happy and friendly.
– Autistic people do not know how to make contact.
– ADHD people are so restless.
Some generalizations are true, at least often. But quite a few are not. It is good to remember that we all are primarily human beings with our strengths, weaknesses, and diagnoses.
Our child occasionally utters a ”sentence” of a few words, mixing Finnish and English, but he is certainly not talkative. When organ accompaniment begins, he does not sing but presses his hands over his ears and may growl a little – there is too much noise for his oversensitive perception. He learned to sit on the toilet bowl when he was 7 years old, but he is still in diapers. He does not tell me he would like to go to the bathroom.
But early in the morning, this child walks from one bed to the other, hugging, kissing, and wishing good morning with happily twinkling eyes. He has time to wonder about a snail on the yard, feel delighted about a balloon, and be overjoyed about a summertime trip to the beach. He is happiest when surrounded by his family, and his great sense of humor makes us laugh our heads off. For us, he is the superhero of his life. He is important for us as a special human being. He has that one extra chromosome – the best extra chromosome ever.
Text: Sarianna Suominen
Translation: Sirkka-Liisa Leinonen
You will find the original Finnish blog post here.
Viime sunnuntaina vietettiin laskiaissunnuntaita. Kirkkovuodessa laskiainen aloittaa pääsiäisjakson, ja nimi laskiainen (Esto mihi) viittaa paastoon laskeutumiseen. Varsinainen pääsiäistä edeltävä, 40 arkipäivää kestävä paasto alkaa tänään tuhkakeskiviikkona. Paaston aika huipentuu pääsiäistä edeltävään hiljaiseen viikkoon.
Kirja erilaisuudesta, elämän ainutlaatuisuudesta ja rikkaudesta: teoksessa puheenvuoron saavat erityislapset, heidän läheisensä sekä aiheen parissa työskentelevät ammattilaiset.
Kurssi on suunnattu rauhanyhdistysten johtokunnille, taloudenhoitajille ja muille vastuunkantajille.