We’re almost being taught how to parent again, and the number of people involved is increasing, which is fantastic…but that number brings more influences.
Sometimes you feel lost, and need a guide, other times you feel like you’re being treated like a school kid who is learning maths for the first time.
On Thursday we had an appointment with the same doctor who told us “there’s nothing you can do to help Jennifer, she’ll be who she’ll be”….
But this time we argued that point, and it turned out to be an interesting conversation.
He mentioned that there’s nothing we can do about the brain damage: correct.
If her brain decides to tighten up her muscles so that she developes “spastic cerebral palsy” then there isn’t much we can do.
At the moment she is showing signs of “athetoid cerebral palsy”, especially in her back.
You can point symptoms of that type of CP towards Jennifer, but all kids with CP are different and have varying grades of CP so I don’t read too much into everything written under that link.
But this is where the doctors and special needs workers aren’t in sync, well this doctor anyway.
He mentioned that this athetoid can often disappear before 12 months
And her legs or feet may start to become spastic, but that’s not certain. Last time he told us to look at her thumb, and see if that turned inwards and became stiff.
And all these stretches and body posture exercises we do with Jennifer are useless!!????
Seems like doctors are at the end of an uninteresting book and just want to close it compared to for example Torill who is writing the book and who knows full well the benefits of what we are doing.
I think this situation makes us automatically listen to, or believe the story or lesson that sounds most positive and gives you hope, you become an optimist, which has its downfalls too.
We’ve seen improvement in Jennifer because of what we’ve been doing and she is constantly impressing Torill with what she can achieve.
But according to this doctor, nothing we’ve done or Torill has done has helped her.
He went on and on, equipment-won’t help, stimulation-won’t help!
I argued that we’re only trying to facilitate everyday life so that Jennifer can use her body in the most effective way as possible, isn’t that necessary?
And even if Jennifer’s muscle tone becomes stiff or whatever she still needs to learn how to use the bodily functions she has now so she can become as functional a human being as possible!?
He was bordering discrimination until he ended by saying;
“You cannot prevent the onset of cerebral palsy, she will be who she will be!!”
If he had of just said that the first time…….everything made sense now.
There is nothing we can do about the onset of CP, we can’t prevent it and I don’t think we ever thought we could!.
But we are trying to give Jennifer the best possible control over her body, and nothing anyone could say to us would stop us trying that!!!
He didn’t want us to have a guilty conscience for doing things wrong, or not doing them, when or if cerebral palsy kicks in.
So he’s right in way, but doesn’t he know what a physio does with these children?
At the end of the day it doesn’t really matter, because we know why we’re doing it and nothing is written in stone!
We went through a 10 month developmental chart, where obviously she is struggling with her motor skills. But cognitively he was really impressed, her language is above average and she does everything else she should at this age, he was also very impressed how quickly Jennifer reacted to touch and noises.
It’s nice to hear some positive comments, they don’t come all that often when we visit hospitals!
He mentioned that we should focus just as much on language, love and caring and cognitive ability as we do on motor skills and posture, and we do that anyway.
But in contrast to Laila, who would like Jennifer in kindy 4 days a week, he would like to see us spend more time with her than she spends at kindy.
We respect both arguments, but it’s hard not to be influenced by both sides.
Laila mentioned that children with special needs often take longer to get adjusted to kindy, and that if she goes 4 days a week then she will adjust quicker.
But we kinda feel that we want her closer to us in the first few years…what influence will kindy have on her? will she have a dedicated assistant or an assistant who just does enough…?
We feel like we’ve only got one chance, her brain is only going to develop once and we want that to be under our control as much as we can, without shutting her out of society or society shutting her out…..
In the end it’s us that decide, we decided on 3 days a week and Odrun reducing her working hours by 25%. The doctor will write a recommendation so Odrun can apply for a carers allowance.
We want her at kindy, and we think it will be good for her. But we believe that with the guidance of professionals it’s us as parents who will achieve the most with Jennifer.
We will lose money,the allowance won’t cover what we lose but at least we will have something.
When it comes to applying for a carers allowance we have to explain how much extra work we have with Jennifer…….and that’s how the decision is based upon, but the people making the decisions don’t have a set of guidelines to follow it seems and therefore make their decisions based upon how much extra work they think Jennifer brings us.
It’s a tough decision for them, Jennifer’s not sick, and she’s as kind and calm as you could ever imagine….but her situation brings a hell of a lot of work. It’s not the baby, it’s everything about the baby per se……
Then again we could just let her lay on the floor everyday and suck on her fingers and see if she can manage to develop into a functional human being by herself…..
Jennifer’s had her first swim in the pool with Odrun and Torill, she didn’t like it at first, but after a little while she got comfortable and even had a few small kicks. When she’s uncomfortable, stressed her symptoms become more apparent, see the clenched fists in the picture above. She eventually relaxed but it took probably 25mins. Her dummy helps calm her down, but we can’t use that forever.
Laila has visited us a few times, she has a lot to teach us. There’s some really simple games to play with Jennifer.
Laila sat next to Jennifer and she was baby talking for a while. Laila took her foot and shook it a little and said “foot”. She did it a few more times, like shaking hands but with her foot…. then, without touching her foot she just said “foot”…Jennifer’s foot popped up and the game had begun…they carried on for 15 mins or so and Jennifer loved every minute of it…..I think Laila did too! Jennifer’s only met Laila 3-4 times, but she recognises her now and feels comfortable.
Such a simple game, such a big reward.
There’s a lot to be proud of with Jennifer, her hearing is really sharp, the things she cried at before are not so scary anymore, the door just needs to open, or the last step on the stairs creaks and she’s right on you, the sound of the microwave and the dummy gets spat out straight away. The list goes on….she smiles she laughs and she enjoys the company of her big sister. She’s comfortable in most situations and she has a daily routine facilitated to inspire and develop curiosity and understanding.
There is the other side too….the side Odrun and I probably don’t consider too much anymore, the side that no-one else understands.
The fact that she has poor motor skills has become more and more obvious the last few months. She can’t sit without support, her head usually falls over to the right and her hands aren’t gripping objects consistently. She is having seizures or epilepsy weekly now.
We have however noticed something about her eyesight that we can’t quite put our finger on. I noticed the last time we were at the sight specialists that she loved the torch flashing in her eye, you and me would look away but she looks at it. I’ve been using a torch with her like the doctor did and maybe that’s stimulated something.
I’ve taken pictures of her where you can start to see her eyes are out of alignment, so going on where her brain is damaged most, her left eye would be stronger.
We haven’t checked out her seizures, but we’ve asked for an appointment. Her seizures aren’t scary at all, it’s usually when she wakes up her right arm and/or leg become jerky for a little while. There’s not much to it but it’s still worth getting checked out.
If someone had asked me a year ago to look after a child like Jennifer I probably would have run the other way, would you look after a child who is blind and has seizures?
It’s scary cause you don’t know what it’s like……she’s just a little different, and once you get to know her you’ll see there’s nothing to be scared about! You’d need to learn to interpret her, which is not an easy job, but once you’ve got the hang of it she’s just like any other baby.
We’ve applied for a carer. The carer will relieve Odrun and myself, not too much in the beginning, maybe once a week for a few hours and maybe after a while we’ll increase that to a day a week.
Odrun’s great at taking one day at a time, I’m not. I like to plan the future to a certain extent and know what’s coming. I hate the unexpected. I read some stats about kids with CP, and the average cost of a child with CP is around 1 million dollars, if that includes public health care costs or private I’m not sure.
1 million, about 2 house loans. Most people spend most of their adult lives paying off 1, so it basically means that Odrun and I have to find a way to pay off three mortgages. If this year is anything to go by that figure is pretty much spot on.
These I guess are just some of the problems we are faced with daily, some of the decisions we have to make and some of the thoughts that constantly fill our heads….
It’s wearing us down, and we needed to do something about it. Odrun has asked for an appointment with a psychiatrist who deals with parents in the same position as us. Really looking forward to getting a bit of help from someone who has experience and knowledge with that side of things. We need to be able to cope and we’ll be taught how to cope with life in the future….
What you see or what you read here is probably not even half of what’s going on, this is deeper and more complex than you could ever imagine, so much so I don’t even think we as parents understand even half of it.
Jennifer’s a beautiful baby and she gives us such a rewarding feeling by being so happy and nice and achieving the small things she does. But if you imagine the future and her symptoms increasing and causing her pain and discomfort, not having control over her movements and possibly increased seizures or epilepsy……you kinda want her to stay as a little baby forever.
We need to remember and cherish this time with her, as we did with Emma. Cause it’s probably never going to be the same again!