Autism x 2?

In my Christmas cards, I wrote that I hoped that everyone’s New Year would be a better one than 2013 was. When I had written that one too many times, I realized, that 2013 was a true Anno Horribilis for us but that 2014 does not promise anything better. The 2nd January, we took “Boo” to BUP (Child and Youth Psychiatric Unit). It was the initial interview for further testing. Them looking particularly for Autism and/or ADHD. For 90 minutes we had to try to entertain “Boo”, at the same time as answering questions about pregnancy, his baby years, his toddler years, all the while she was watching him and his actions around us, as well as writing down our answers. From experience, I know that it doesn’t work. They always misunderstand and get it wrong, so I will ask for a copy eventually, so I can correct what she has misunderstood. I saw this when I read what had been written down during the interview about “Kitty” five years ago.

When we left, we only knew that she did not know what to do. Whether to move on, or wait to see if it is a development thing and him just being behind his peers. She told us, she would let us know what she had decided, last Wednesday, when I was scheduled to go there with “Gubby” for his ADOS testing. But she never showed up! Tomorrow, I go for a two-hour interview with the psychologist that is in charge of “Gubby’s” case, and she is supposed to show up afterwards, to talk to us then instead. I know it is not right to think like this, but more and more, I sink in to depression about all this. Wondering what God’s plan is for me. WHY he decided to punish me in this manner. Not sending me one abnormal child, but four! What is it that I am supposed to learn from all this? It says in the scriptures that we are here to be happy, not just feel sorrow. But I feel nothing but sorrow. When “Gubby” is at pre-school, I just go to bed again and sleep, because I feel up to nothing.

The ADOS testing took place last Wednesday, and at certain points I had a difficult time holding my tears back since my sweet little boy, did not know the calculation behind everything and how “mean” these people in reality are, looking for everything abnormal in him and his behaviour, to put a label on him. And that label is not angel, cutie, sweetie but something that will affect his whole life. We came in to the room and I was told that I was not allowed to utter a word. I had to sit at one end of the rectangle room, with the special ed person, L., and her video camera. On her lap, she had her manuscript and “Gubby” was taken over to a table at the other end of the room. There, the psychologist sat down with his manuscript. Talk about not being spontaneous! Every word HE said, was in the manuscript and he had to sit and read it, the entire time, so it all became like a really bad play! He even missed things “Gubby” did since he was trying to read and understand what to do next!

First he took out a plastic bag and took out toy after toy and named them. “Gubby” fell for a space rocket and some tools, that he sat and used on it. He also liked a fire engine, that did not have a hose but a ladder that could be unfolded. He did that and made a water sound. Which the psychologist did not hear since he was in HIS own world and the manuscript. He wanted to play with dollhouse dolls but “Gubby” was not interested in them and role play. I knew this was a test. Then he said that the stove was on fire and “Gubby” dropped the space rocket, did the sound of a fire engine, old-fashioned style, and folded out the ladder and made the water sound AGAIN. If that is not imagination what is? Then “Gubby” found a tiny, tiny book. He looked in it and saw that the pages were white so he asked for a pen. The psychologist gave him a stick and “Gubby” pretended to write on a page. “What are you doing?” -Writing! But not looking at the silly man who asked such a silly question. “What are you writing?” – A book!

Soon the psychologist started to take the things away and “Gubby” happily helped. Then the L. took off a blanket, off a bunny beside her. “Gubby” wasn’t even looking and when she pointed at it, he just sat there. So she had to put it on the floor, a cord attached to it, and push a button that made it jump forward. That made “Gubby” react and he asked if he could go over to it! He did and asked if he could push the button and he had a fun time but I think they wanted him to make the bunny jump towards one of them, and not just him pushing the button, letting it go wherever.

Then they just took it away from him and had him sit at the table again to get a snack. They wanted him to ask for more and more cookies which he did not. So the psychologist had to ask him “Do you want another?” and then he would give him one of the containers and see if he would ask for help to open it. Which “Gubby” did not do, but when asked if he needed help, he just said “no, I can do it myself!”. Which he could with a lot of effort. Then F. (Getting tired of writing psychologist and his name starts with F.) packed things away because “Gubby” was sick and tired of the cookies and did not want any more saft. It was time to go down on the floor again. He set out all sorts of toys and “Gubby” looked a little bit at a truck but then discovered this baby toy where you turn or press a button and something comes out of a door. This particular one had three doors and a garbage bin. When he pressed the first button, Big Bird came out and sang a song, then Elmo, then the Cookie Monster and finally Oscar opened the lid and came up singing his song about trash. It was a funny toy. “Gubby” loved it so much that he did not care about the others. At one point, when F. was sitting in front of “Gubby”, so I could not see him, L., called “Gubby’s” name but he ignored her. She asked me to do it. First he did not hear me over the toy,  I think, so I said it a little bit louder. He peeked around F. with a look like he was wondering why I called on him. I did not know what to do, so I just said “Hello” and smiled, and he smiled back.  L. asked me if he has seen Sesame Street on TV. I told her that we have a film. I could have told her that he loves music but did not think about it. Nor that he has lots of T-shirts and hoodies with the Cookie Monster and Elmo. Or that he even has a soft toy Elmo, that I am the voice for. Just did not think to mention it! Finally F. started to pack away things. Then “Gubby” saw this other baby toy and asked what one did with that one. F. said, “oh it doesn’t do anything”. But “Gubby” sat down and studied it, discovered a little handle and turned it and suddenly a thing popped up. It was a jack-in-the-box and  F. couldn’t get it to work! “Gubby” made the clown jump up a couple of times and then put it in with the other toys. Then it was back to the table.

F. took a baby doll out of a bag and said it was baby’s Birthday. He took out plates, glass, cutlery. Then he took out play dough and said “this is the cake” and shaped it in sort of a cake shape. Then he put on two candles and “Gubby” asked if he could put on one too and he finally put on the last one as well, since it was laying there. Then they were to sing, F. said, for baby. So “Gubby” happily sang along, shouted hooray four times and then he reached over and pretended blowing out the candles, like we do at home, when F. was reading in his papers. F. then looks up and says, now we are going to blow out candles and “Gubby” looked bewildered, puckered up his lips but did not dare to do anything, until he saw F. do it, since he probably thought “best to do as he does since I already did this once, and is told to do it again!”. Then F. says “Baby is hungry”. This is where I really got irritated. “Gubby” slowly took away the candles, took his little plastic knife and tried to cut the cake in to a triangle-shaped piece. But F. just sat there like a parrot “Baby is hungry, Baby is hungry!”. “Gubby” ignored him and finally got a piece of the tricky play dough and put it on F.’s PLATE! And then he cut himself a piece, F. going on like a parrot. Finally he takes a spoon and tries to get a piece off, holds the piece on the spoon and takes it to the baby’s face and makes a gobble sound. For heaven sake! You want him to play, well let him play then! Then F. says Baby is thirsty. But he had not given “Gubby” a mug, so he had to give him his when he noticed, and all this while L. sits and says like a parrot, “you forgot napkins”!!! So “Gubby” gives baby the drink and makes slurpy sounds. Then F. pretends to spill saft and “Gubby” grabs the now present napkin. And wipes the pretend spill. F. says Baby is tired, and L.  finally throws him the blanket that was sitting over the bunny. What a circus.

Finally, L. , stood up and got a plastic gun out that she dipped in soapy water and then blew bubbles with it. “Gubby” asked if he could do it and she said a reluctant yes. She had to instruct him how to do it, but once he understood not to push the button until he had dipped it, then he had a blast. My beautiful little boy. He doesn’t understand why we go to these weird places. To the hospital where they hurt him with needles, where he has to lay still in a vacuum bag. To BUP where they act weird.

After we all stood up, they asked me if I had something to add? I did not know what to say? My parking had gone out five minutes earlier. And “Gubby” was pulling my jacket, saying “we are going the wrong way”. Meaning, that when we were on the road, he wanted to turn left to the hospital and not to the right, to BUP. When we got out of the room, he saw a man that he met in August. The man is the physical therapist that has given “Kitty” help tools. “Gubby” and I went to fetch those tools, in August. P. carried out the heavy white board to our car, since he was on his way over the street to eat pizza. Now when “Gubby” saw him, he asked me if he was on his way to eat pizza! Talk about memory and not forgetting faces!!! A talent I have myself. And then when we got out to our car, he asks me “are they putting a needle in my leg?”. I assured him, no hospital visit that day, no needles. Just going home to have lunch.

Tomorrow, T. and I are off to BUP to answer questions about “Gubby”. Again! But he will be at pre-school. I already know the questions. They are the same the special ed teacher asked at the pre-school. The teachers hated answering them. So will I! They are ONLY looking for abnormalities. Nothing else.



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5 responses to “Autism x 2?

  1. I have no idea. The only thing I can say is that since the New Year, when I discovered the dashboard feature and that all comments end up in spam, I have discovered bizarre comments. People having their own private chat going on, that has nothing to do with the post that they “are commenting on”. And something strange is going on, that is for sure. I wrote a post about children’s books I found on the Swedish yearly booksale, and everyone is reading that post and saying that they loved all the YouTube clips and videos I posted there and ALL THE TIME. Since I have never posted a single YouTube clip or any video of any kind, I feel offended, since something strange is definitely going on. What makes me mad is that one can not reach anyone working for WordPress, who can answer what is going on. My husband who is supposed to know a lot about computers, do not understand anything about WordPress. So he is zero help. In this world I guess there is no way of protecting oneself from anything really. If they can hack into Pentagon, a little blog site would be nothing would it?
    If anyone out there knows how to contact WordPress people, I would certainly be grateful for the information. The only thing I have read on the forum is that WordPress never answer concerns on the forum. I suppose their only answer would be to buy all their little services.

  2. Heya! I just wanted to ask if you ever have any trouble with hackers? My last blog (wordpress) was hacked and I ended up losing several weeks of hard work due to no data backup. Do you have any methods to protect against hackers?

  3. Thanks for the positive feedback! Share as much as you like. There might be lots of people out there with children they love, but who others’ find fault with. It breaks my heart to have to go through what I have to go through with my boys. But life is not always fair, is it?

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