We had a very good begin! Lucien Loves it. We scheduled the session for after lunch, and he asked for it the whole morning. He started with an hour or so while playing, then we had a break for our ‚official schoolwork‘ (reading, writing and maths). He did well, focused like a ‚usual‘ good day.Then I let him wear the headphones while doing chores (folding laundry), which was a brilliant idea. He finished it without any struggles in half the time it usually takes with a BIG smile on his face.Probably it was just because he likes the music and he didn’t get distracted, but it was nice!
Day 2
Lucien finished the 2 hours (while doing chores and playing) before we did schoolwork. I was curious to see if and how it affected his attention. Well, it sure doesn’t seem to tire him, and his focus is good. He did his work optimistic and with energy. I have to say that he is lately often doing well anyway, so I don’t want to have false hope, but it is great to see him work happily like that.
Just to make sure, it doesn’t matter if he speaks to us (or argue with his sister while listening right? I try to keep him working or playing mostly undisturbed, but sometimes life happens.
Day 3
Today Lucien had his physiotherapy, speech therapy and occupational therapy. He is on a ‚trial period‘ of 10 weeks at the revalidation center in Enschede. He went with my father, who was with him last week also. He came back shocked. He seemed SO much more able to focus on things, but also to understand things. For example, the speech therapist keeps trying to get him to put 4 pictures in an order that makes sense, so to make a story. He absolutely does not get that (don’t know why she keeps trying). But today he finished 2.
The physiotherapist was happy with his bike riding, which was much improved in a week, though we hardly practiced. With the occupational therapist he build a KNEXX machine with very little help and did some other things he couldn’t do before.
I’m actually not sure what to think. I do NOT want to have false hope, and am a little sceptical, since it’s only been such a short time. But I can’t deny it’s very interesting. The listening today was a little harder because we had to do it all in one setting because of the time. He did well, but was glad it was over. Next time we’ll take a break again.Besides, both our skulls are feeling a little sore.
Day 4
Lucien seems to be more communicative. Yesterday I was joking with him, and he understood it without explaining, after which he laughed so loud (and especially, real!) I never before remember him laughing.
Right now he is roughhousing with his siblings. Usually he would either not participate, or only for a little bit, but they would all boss him around, pull him over, leaving him crying. Now he seems to more ‚take his place‘, if that makes sense. He is whispering to himself: „I am stronger!“. And he doesn’t give up. He even, at this very moment, is initiating a new play. He NEVER does that, it’s always his sister. Right now, he refuses to let her take the lead.
Today was a ‚miracle day‘. In the morning, we went to an empty parking lot to practice biking. I was prepared for a lot of running and hoped I would be able to be patient enough to deal with the inevitable frustration. But… After I set him off, he just went! All ALONE. I hardly dared watching, but I couldn’t do anything for him because he went super fast. Usually, he has NO idea whatsoever of what to do when he needs to make a turn or there is an obstacle. Now, he just did it! He kept his balance all the time.
Tonight we went swimming. It had been a long time ago, but a friend asked if we’d come with them, and I decided to give it a try. I was used to him clinging to me, crying about drops of water in his face, a long, long time to finally relax and then within half an hour he would be so cold we’d have to go. Not so this time. From the start he loved it. He played with his sister and friends. They had fun, went on the slide, everything. When I asked him if he wanted to go with me in the deeper water, he immediately said yes. For the first time, he realized that the bands around his arms and waist were actually helping him float. He told me so with wide eyed wonder and totally happy. And then… He swam. He actually did that!!! Well. It looked like a dog’s swimming off course, but he loved it, had so much fun! We stayed for over 2 hours and he has not once complained about being cold.
Hi! An update again.
Yesterday, we had an evaluation at the revalidation center, with all the caregivers involved (quite a crew!). I was a little nervous about how they’d react, but they were really supportive. And what we hoped, happened, namely we made the agreement to stop for now with their therapies, but come back for a screening somewhere around the end of June. Tomorrow we’ll have the last appointment for now.
Lucien keeps on making progress. I notice he is more confident, especially in his schoolwork. Where I usually sit right next to him constantly, guiding him through every single thing he does, I now have moved to the opposite of the table and try to let him do things a little more independent, which works great so far.
When doing a maths exercise, he calculates things without manipulatives and help from me for the first time. What is more, after he calculated, he also remembers it and writes it down! That’s huge.
So far, we’re still doing great! Wondering what’ll happen next.