It’s been approximately one and a half year since our world turned upside down – since we learned that our boys are autistic. It sure has been a roller coaster ride. Emotionally, we’ve delved into the darkest corners of the human mind and then slowly reemerged back up into the sunshine. We still go up and down but the roller coaster is slowly changing from one of those crazy roller coasters where people feel dizzy just looking at them to something a bit more innocent, a bit more manageable. And it seems as if the general direction is upwards of late.
Fast forward to today and we’ve now been back in Iceland for about 3 and a half month (we lived in Denmark for just over 2 years). What a turnaround. Everything is easier. The language (obviously), the support system, having the family around, and I could go on and on. We knew that it would be easier on the boys too. Just the departure from the bilingual situation they had to deal with in Denmark is a tremendous relief. As most people who have someone with autism in their lives know, getting one language right is challenge enough. They are also getting 100% one-on-one ABA support in their preschool, meaning that 8 hours a day, 5 days a week, they have someone with them to help them through the everyday challenges they are faced with. In Denmark, once we got the boys to the special institution (basis-gruppe) they were in for the last months before moving to Iceland, everything became so much better and yet, that is nothing compared to what they have now.
What’s more is that their support specialists are so wonderful – and interestingly, very very different from one another. The one that works with JA is this warm and wonderful grandma type – not too many years from retiring. She is so lovely, has a certain calmness around her, speaks in a quiet voice (the opposite to JA) and is generally just wonderful. And just the right type of support JA needs. They work great together and JA absolutely adores her. Just mentioning her and his expression lights up.
V’s special teacher is very different, a good thing that. She is open and friendly, has a bright, positive face that makes you want to smile in return. But she is also quite firm and doesn’t let V get away with any bullsh*t (forgive the language), something essential for our little man who just throws himself into the floor if he doesn’t get his way. She has a special way of getting him to do what she wants him to do – a great quality that is clearly starting to pay off. And what’s best is that, in addition to all the above, she is also a warm person that gives V just the right amount of affection. We couldn’t be happier.
And guess what, we are really starting to see some progress. And it is a wonderful thing to see. Right now, the main focus of JA’s training is twofold. First, it’s improving his pronunciation (he is very verbal and has great meaning behind his words but his pronunciation isn’t very understandable and not everyone, neither grown ups nor kids, get what he’s saying) and second, it’s practicing his social skills. About 2 months ago, we had a breakthrough with the pronunciation when he realized that he was saying things wrong – something he had never done before. Before, he would come and say “bilk” and we would ask if he meant milk and he would say yes. But if we’d repeat his pronunciation and say “Do you want bilk” he would look at us weird and shake his head. Now, he is repeatedly correcting himself when he pronounces something in a wrong manner. It’s baby steps, sure, but they’re steps in the right direction. We are thrilled for him.
It’s a similar story with the social skills. He is slowly learning how to socialize with the other kids in a manner that they find acceptable. It has to do with everything really; the way he talks with them (interactive communication – not only one-dimensional), the way he plays with them (taking part in the game, showing respect, switching roles etc.) and so on.
V is showing even more progress. That might, of course, be normal given that he is still quite young and has a lot of developmental progress to make up for. When we came to Iceland, V barely spoke. He was then 3 years and 2 months old. He maybe had about 20 words in his vocabulary and rarely used them – almost never unprompted. He didn’t seem to listen when spoken to and we had a lot of trouble reaching him. Mealtimes were horrible (he refused to eat anything but food rich with carbohydrates – and sometimes not even that) and was in many ways distant and solo. Fortunately, his sleep issues had been dealt with already and when he was in the mood, he was generous with hugs and kisses. He was also showing a high ability in certain areas, such as solving visual puzzles, counting to 10 in 3 languages and knowing all the letters by heart – in English! But all in all, he was very far behind his age-mates.
Now, a little over 3 months into his ABA training, he is making progress full force. He’s already expressing his basic needs verbally, such as when he wants to eat or drink, even what he wants to eat or drink, he is starting to answer all sorts of social questions such as what his name is, how old he is, what his brother’s name is and so on, and the past few days he has started to use a few 2-3 word sentences! We’re suddenly hearing things such as “drink milk”, “go out”, “come with me”, “we are home”, watch TV”, “first this, then this”, and other similar combinations. It’s amazing to witness! His sense of self-help, such as dressing and undressing, has also gone from almost zero to being able to undress almost completely and dress himself to some extent. And yesterday, he finally peed in a toilet for the first time, and not only once but three times! He also went without a diaper for a long while without wetting himself once! :) This is huge!
Taking all the above into consideration, it’s maybe not hard to understand why we’ve been feeling positive of late. We are seeing so much progress, almost between days, that it’s impossible not being optimistic and hopeful. We are so proud of our boys and so very thankful to the wonderful people helping them along the way.
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* all the pictures are from our family section of the preschool website :)
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