We were told from the beginning, at least by the doctors who were positive, don’t treat Jennifer any different than you would treat a normal baby.
And that was easy for the first few months, babies don’t do anything else than eat sleep and shit!
But when you are trying to raise a child with a disability that involves one of their senses, things become different very quickly. Not everything, but most daily activities take a different form, and you forget what comes naturally. We’ve probably focused a little too much on getting her comfortable, can’t really blame us though cause she hasn’t exactly had the easiest start to her life.
We had a visit from the local councils head of Educational and psychological services, (PPT for de norske) who actually just lives down the road. She works with senses, and will co-ordinate between us and Jennifer’s kindy to make sure Jennifer is getting the extra help she needs. In contrast to the physio, who works more on motor skills and equipment and toys, she will work on sense recognition with us.
I can’t express how much we appreciate this help, and how much we need it. We’ve become naive in a sense that we forget a lot of the things you would do with a “normal baby”.
Something like 90% of what we learn is learnt by what we see……a baby’s natural curiosity is a simple path….they see an object, they want to touch it or taste, they grab hold of it and put it in their mouths….curiosity solved. Curiosity drives a baby to roll over, drives a baby to become mobile and eventually mature into toddler.
Jennifer hears something, she listens intently and curiously, but she doesn’t have the ability to solve that curiosity like us, we have to help her solve it.
And although she is aware of her common surroundings through some form of eyesight,common voices she’s got the hang of, noises that used to scare her are everyday life now. There’s just so many other curious things in a baby’s world and we need to teach Jennifer what they are somehow.
We’re certain she can see some image at a distance, either in the form of light or shadow, possibly blurry because she stops up when we’re at a new place, has a good look around and then becomes herself again. But anything close to her apart from a mirror that reflects light is not recognisable, even payed attention to.
Jennifer’s entering a new phase now, and although no-one has said it to us it’s obvious that what we’re working on now is all about getting her mobile. She mentioned that we need to get Jennifer understanding where things are in the house, a daily routine of walking in the same pattern around the house and touching the same object one after the other and at the end we can attach a bell to the wall or something…..when she gets familiar to the activity she’ll expect that bell. We should do this upstairs and downstairs, and when we pass the bell give it a ring so Jennifer knows where she is in the house. So simple, so smart but we would never have thought of that by ourselves. I guess that we could attach sound signals to most rooms, but we’ve been mainly talking to her and telling her where she was and what was happening.
Another things is getting Jennifer out of her little room and onto the middle of the floor. She’s getting a wooden board to lay on that’s made of thin plywood so when she pushes at her toys they roll away but also roll back.
So many phases to overcome and none of it natural….
It’s still to be seen if she can become mobile, Steffan mentioned her right leg before surgery and her right leg has been mentioned after as well. Steffan asked if she moved it at all and during her 6 month check up it pointed inwards when she was held upright. There are no signs that we are aware of cerebral palsy yet, but there’s a long way to go and there’s different forms of CP too. I’ve read that if a child is not sitting by 10 months then they can possibly be diagnosed then so we’ll see.
But people around us seem to be more positive than they were when Jennifer was smaller. When she was smaller all we wanted to know was how she would turn out, the one burning question that lingers in your thoughts 24 hours a day, but the one question no-one can answer. No-one would give us a straight answer, and who could blame them, they couldn’t! But now we’re starting to hear things like “you can’t see it” (the brain damage) or “it’ll just take some time”. The physio has mentioned many times that Jennifer has lots of potential!!
It takes a long time all of this, and it’s probably hard for outsiders to see Jennifer’s progress, but she is progressing…..and that was probably the one thing we were most afraid of, that she wouldn’t progress at all. That there wasn’t enough capacity left to progress.
People use the word exciting or interesting about Jennifer’s future, I use the word nightmare! Like waiting for the snow to melt so spring can come along, it can seem to take forever…….and you bare that thought day in day out with the patience of a child at christmas time.
It remains to be seen how far she can go and it’s impossible as a parent to give up hope of a somewhat normal life…all your common sense gets thrown out the window while hope drifts in through the door and lingers. We hold our own hopes for Jennifer, no matter what has been said before…….because if love makes you blind, unconditonal love makes you deaf dumb and blind!!!