Autism – Not the end of the world

Have your child just been diagnosed with Autism and for the life of  you, you have no understanding how they got to this conclusion? Does it feel like your life has just come to an end? Do you sit and look at your child, who you up till yesterday, thought was just as normal as everyone else, and can’t keep back the tears, because now it seems he/she is not the same person anymore? Do you sit and wonder, “Quid Nunc”, what now?

At the end of the 1980s, an acquaintance had a baby girl. She was a strange little baby, because if you were asked to hold her, you were also instructed that you must not let her see your face, you had to carry her so she looked outwards, at people. Carrying her, with her back against your chest, you were warned, “do not let her see her mother, and realize it is not her mother carrying her!” Things got more bizarre. On Sundays I visited the family, and she would be in a walker, but she did not move in it, and her head would tip backwards at times, but she had no strength, to lift it up. You had to help her. Likewise when it tipped forward. I left the country, but a few years later, I came back for a visit and went to visit the family. She had been diagnosed with Autism and she would not stay in the house when people came to visit, but run out and sit in the family car, listening to the radio. Or she would sit in her room and scream. Strange people upset her world. She had no language. She was the girl-in-the-bubble.

This is all the experience with Autism that I have personally had, up till now, you could say. When I studied at an US University, my teacher in psychology devoted one lesson, to Autism. I will never forget it. His final words were, after letting us see a film with children sitting banging their heads with their hands or against the wall, that “Autistic children belong in institutions! You can’t have a child like that at home. No parent have the strength and energy, to take care of such a child, 24 hours a day. Professionals are needed because they come in and do a shift, and then go home! They are trained to look after such a child for a few hours, and in an institution you can keep furniture and routines in the same place and way. You can’t do that at home, ever.”

When I was pregnant with my first child, I was petrified throughout, that I would receive a child with Down’s Syndrome or Autism. I could not imagine a worse fate! And I have felt the same way, with every child. In retrospect, and with all the knowledge I now have, I know that I more or less have raised one child, already with Autism or within the Autism spectra. But he never was tested nor diagnosed, I was just told that something was wrong with him. Then one son was diagnosed with ADHD, and I realized that even if you hold a newborn baby in your arms, who looks just normal, things can appear later on, and by then, the baby or child has won your heart and you have already learned to cope.

In March, I sat in front of a psychologist and a special ed teacher and was told that my little sweet pea, who we have never considered abnormal in any way, except that his speech has been very late (But then his two brothers have also been late. He has been the latest, but his 7-year-old brother was later and his brother with ADHD was late. ), is in fact Autistic according to their tests. I could not believe what I heard and that there was basically no hope for him, but that he will just need all sorts of help. I went home depressed and felt entirely gloomy about it all. His siblings just shook their heads and said, it was all a mistake and that the people at BUP are insane or something. Because they really have not seen what we see here at home.

Perhaps he has Autism according to all the new criteria? How do I know? And fine, if it helps to have a diagnosis in order to receive extra help in school, he can have the diagnosis. Because I know my child. He is the sweetest little angel. He is always happy. He gives me the only happiness I have in life. And nothing heals better than his hugs and kisses! The last two weeks I have come to the realization that the diagnosis, is just what we make it! First of all, they have declared that he can not speak, that he is just like a parrot, and only repeats what he has heard said, before. That he has no deeper understanding of language. If anyone heard him talk, they would ask for the personnel at BUP and the speech therapist to have their heads examined. He does talk, he does keep conversations, and he does come up with the most clever statements that noone has conveyed to him, so they are the result of his own thinking. They said that since he does not understand language and what it is for, colours mean nothing to him. I bring up colours, because yesterday I sat and observed him in church. I have been keeping him busy in church with a quiet book, tiny smurfs, sticker books, but a week ago, he wanted to colour. He did not want to colour in his brothers’ “Spiderman” colouring books, and finally he settled on a boring “Curious George” one while “Boo” sat and coloured in “Cookie’s” ‘Hello Kitty’ one. That one has simpler drawings in it and strong black lines, so when “Boo” abandoned it, “Gubby” asked me if he was allowed to colour in it as well. I nodded my head, since she doesn’t use it. But I realized that it would be more fun, to have something more boyish, to colour. “Hello Kitty” after all is just white, so not much to colour there.

Last time, I was with “Cookie” at the dentist, we bought these amazing coloured pencils for him, since I have noticed that he doesn’t have the right pressure when colouring with coloured pencils. When you don’t press, you don’t get colour, and it is not very fulfilling to colour in a picture and not see a colourful result! This one brand, is very expensive, but you do not have to press at all, and you get a lush creamy colourful look at once. Never felt or seen anything like it. It is made by “Stabilo”. The effect resemble oil crayons. You can buy a box, for an arm and a leg, or just do what I did, get three for a rebated price. I bought six primary colours and knew this would suffice for his needs. The other day, I went in at the local toy shop and bought him a colouring book with strong outlines, called “Lorries and other vehicles that move”. Yesterday, Sunday, was inauguration day. He sat so quietly and fully concentrated on the floor, in front of me, and coloured in the first picture of his choice and I made the following reflection: He might not know that imagethe colour red is called red, and the colour blue is called blue BUT look at his picture! First of all, his two-year older brother can not stay inside the lines like this. Secondly, his brother does not fill out the space. Thirdly, his brother will make everything in just one colour. But “Gubby”, as you can tell, fills the things in and look at it: He KNOWS that the tree trunk is brown, the leaves are green, the sun is yellow, the water is blue. Alright, he can’t go in to a shop and try on a red shirt and ask “do you have this in blue instead?” but he is five years old and what do they know at BUP about his learning abilities? And can he not function anyway? Can he not just point at something and say, do you have that colour instead? (Above, you can see the pencils. They are thick, so you have to use a special sharpener for them, and it does not show how thick they are here but let’s say, they are really easy for a child to hold! He holds them like one should hold a pencil, not the weird grip that he uses, when the pencils are skinny and gives him no strength to put pressure on the paper.) He was frustrated when he did not have the right colour for the bird, so he turned to me and asked me “can I use this for the bird?”, showing the skin colour pencil I bought so he could colour humans. I nodded. I guess I will have to save up for grey, maybe purple and orange?

Another thing which has happened this past week, is that he has found his oldest brother’s animal book. I bought it 24 years ago and someone left it outside years ago. So it got wet. I was on my way to throwing it away last year, when the children opposed such an action. So we kept it, even though it is all warped and some pages had stuck together, and when I opened them, they got rip marks. He crawled up beside me one day, opened the first page and pointed at the first imageanimal and said: Cat, second: Dog, third: horse. While he did this, he made the sounds. Then on the fourth picture he said: “Hen and you get eggs from it!” I could not believe my ears, and pointed at the next picture of the cow. What is that? “A cow”. What can you get from her? “Milk!”. One part of the IQ-test that he failed was when the psychologist asked “What do you get from a cow? What do you get from a hen?”. “Gubby” was not even paying attention to the questions. Had the psychologist showed him PICTURES he would have been able to say what animal is what and what you get from them!!!! So what is the point with IQ-tests? Is there something wrong with seeing life in pictures instead of in abstract terms? What F. and L. will never know, is that my son full well knows that a cow gives us milk and a hen gives us eggs. And sitting with this book now, every day, he is learning that a chicken can not fly even though it is a bird and that most animals are pretty boring. We actually have some funny conversations which I wish I could have recorded! His favourite pages are the two following imageones. If you look at the bottom left, you notice a moose. This animal fascinates “Gubby”. He likes it a lot and would like to be one, he says. He asks me all sorts of questions. “Mamma was does he do? What does he sound like?”. This last question is a favourite of his, since I haven’t got a clue but I have told him, I think it sort of sounds like a cow so we do a deep cow sound. (He actually want to know what all animals sound like and some we just sort of wiggle our noses for, since they are silent.) Yes, what does a moose do? “He is King of the Forest and he just walks around and checks out his domains and eat leaves from bushes. He is not very exciting I’m afraid!” Another favourite on this spread is the reindeer. “Can he fly, mamma?”. Hmmmm! I have decided to not break his heart, so my answer has so far been “Santa Claus has a couple of these living with him, and THEY can fly, but all the others can just walk and run.” What do they do? “They are boring and just eat!”

imageWhy is the above spread such a favourite? He laughs with delight and with rascalness in his eyes when we get to this part, because I tell him to quickly close the book. “Mamma doesn’t like animals like that! Snakes make my skin crawl and gives me goose bumps, frogs are gross, I can’t stand the mouse’s disgusting tail and lizards are creepy!”. He laughs and wants to know what they do? What they eat? Well, “the snake is sunning himself and will eat the mouse”. And “Gubby” told me himself that the mouse eats cheese and the frog eats flies, so he has that under control! When he has studied the book by himself for a while, and I am doing something, he comes up behind me, and pushes this page on my body, giggles and says “I am putting the snake on you, mamma!” and every time it is the same thing: I scream since I can’t stand to look at the picture, having snake-phobia, and I definitely do not want the picture to touch me, because it makes me think of the real, horrible things!!!! But he thinks it is soooooo funny! Silly mamma!  (Can’t even believe I put the picture on my blog and in my post, I feel like I am going to hyperventilate!)

Every evening, my husband takes the children to the council pool. He, D. and “Cookie”, swims 200 meters every day, so one of them might win a towel. Every week they do a lottery, with everyone in it, who have swam 200 meters. The more days you swim, the more chances to win the towel! “Gubby” so much wants to be with his dad who is hardly ever home, so he sticks to him. Our five-year old can not swim. But he is not afraid of water. And since noone is in the middle pool, he doesn’t want to be there. He goes in with the rest in the deep pool where he can’t touch the bottom on either end. Friday and Saturday, T. came home and said, “Gubby” has dog paddled all of 200 meters today, so we have signed him up for a towel. All ways to move are good ways, right?”. I can’t say that I am excited about him being in the deep pool. But he loves water just like the other fish in the family. And I must say that I am all amazement. 200 meters is far. 8 times back and forth in the 25 meter pool. Dog paddling!

What do I want to say with this post? For all of you out there, with children diagnosed with Autism, who thinks the child’s life just ended with the diagnosis: Look at my son! Never underestimate what your Autistic child can do! More and more I am coming to think that: Isn’t Autism just another way of doing things? Choosing one’s own path? “Gubby” sure is! He knows the colours in his own way. He knows what species an animal is when he sees one and he knows what they do or produce. And he can dog paddle all of 200 meters which makes him entitled to both a towel and a badge. (Last year’s badge, no picture of 2014’s yet on the internet.)imageNot bad for a child who has been declared having a low IQ by the special ed teacher at BUP (psychologist did not confirm this)!!! And you know what,  his development is by no means standing still. New things happen every day.

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22 Comments

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22 responses to “Autism – Not the end of the world

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