“How are you?”
I never know what to answer when people ask me this question. Not because of the person showing interest, but because of what happens in my head at that moment. I go over everything in our life, try to take an average and make up a total score. I can’t do this very fast and so I usually end up saying: “Pretty good.” Because can anyone really say life is 100% good? In our case it’s never really 100% good. In our normal, a family with a special needs child, there is always something going on. Not that that is necessarily always a bad thing. Some things you get used to, such as still changing diapers and giving tube feedings. Other things we never get used to, such as poor sleep or Vera’s temper tantrums.
Not getting enough sleep is one of the trickiest. After having visited two sleep clinics, we now have a lot of information, but no real solution yet. Vera wakes up crying and talking and tossing and turning many times during the night. And she is done sleeping very early in the morning, between 5:00 am and 5:30 am. While I write this, our pediatrician is looking into a different sleep medication and we are hoping to get some relief soon. Because we can handle everything better when we are well rested. And Vera herself feels so much better when she is rested. When she has had a reasonable night, we see a cheerful, goofy, talkative 6-year-old girl, who wants to be independent. If we have had a bad night, Vera can be quite defiant. There may be kicking, hitting, throwing things and biting and it will take a lot of coaching and guiding to get her on the school bus in a good mood. Off to school where she is now in the Blue Group. Since summer, Vera is no longer a Kindergartener, but an elementary school student. And just like at a regular school, this means sitting at desks in a row, working more independently and learning ABC’s. She is fully a part of this class. But it is still new and takes some getting used to. Some deficiencies are more noticeable now. Such as Vera’s vision. We know she has limited eyesight, but at home this doesn’t interfere with things as much. Now that Vera is in her new grade, she gets to go to recess in the big schoolyard. This means more kids, bigger bikes and carts and a larger space. If you are not that stable on your feet and you can only see things clearly that are 1 meter away, it can get a bit dicey. The teachers noticed and try to take Vera to the schoolyard when things are calmer, or have her play in a quieter corner. In the classroom she has been placed in front and when something is put up on the digital board (which still proved hard for Vera), she and the girl next to her have an iPad that shows what’s up on the board, so they can see up close.
It seems like small adjustments, but we have found that small adjustments can make a big difference. Sometimes we feel that we have made too many small adjustments in our lives and our own energy and we have to take a step back for a bit. I recently experienced this when I went to a museum with Vera and the adjustments were missing, see my Facebook post about it.
And sometimes we notice that small adjustments at home, in schedule, in approach, in tools, help Vera thrive more. That’s when she is most fun, and we are more fun and things are more fun for Mieke. And then things are pretty good 😉
It didn’t become an overview, this story. There is so much more to tell. About Mieke, who is becoming such a teen, about still diapers and tube feedings, about casts again, new splints, new shoes, new wheelchair. About Vera’s glasses that do help her see better, but will not completely correct her vision. About sensory processing and a trampoline in the living room. But for now, we’ve given you a bit of an update on how things are going over here.
Niels & Leonie