Our special little girl

I always thought that when someone described their handicapped child as their ” special little boy or girl” it was to be politically correct or just plain nice, I know different now.

In hindsight, the first 6 or 7 months were a train wreck. Nothing really happened physically with Jennifer, but after the change of milk, things have happened.

Odrun has described it as having a completely new baby after we found out about that allergy and new things are starting to happen almost daily now. It’s only been in the last few months that we’ve been able to see where she’s really at developmentally and sometimes it feels like we’ve gone back in time, like we have a little 5 month old albeit blind and the rest…..

In a way we treat Jennifer like she’s 11 months old, she eats semi solid food, she sleeps twice a day at regular times, she still needs turning over during the night at least once, but she sleeps 12 hours, she is easily satisfied and easily calmed down, everything feels like she’s 11 months old, but physically she acts like a 4-5 month old.

If you walked in with no prior knowledge of Jennifer, saw her laying on the floor kicking her legs like a wingless bird, laughing and carrying on, your first impression would probably be ” that’s a happy little 4 month old baby”.

It opens up some pretty complex questions about her future.  The demands we put on her to achieve things she may not achieve, or may just need time to achieve could be using a certain capacity she may need for other things.

so happy to just explore

Jennifer’s behind, but she is moving forward, albeit extremely slowly. So if she’s acting and looking like a 4-5 month old baby, why are we trying to teach her to be an 11 month old?

There is the physical reasons of course, a human body needs a certain strength and flexibility, and only specially made equipment will help her body stay flexible enough until her brain can catch up with it.

But for example when Jennifer turns 6, is it right that she will be in school with children of the same age? Trying to grow, learn and develop at the same rate?

Would she learn more by being given the time she needs to master certain things?

In many countries, children like Jennifer go to special schools. In Norway, they go to public schools and require an assistant full time.

Which is correct?

If you place these children away from society will they learn what society is about?

But if you put them in public schools, will they learn as much?

We all have a certain capacity, and we all know when enough is enough, but it would seem this is forgotten about  when it comes to kids like Jennifer.

She’s trying so hard to gain control over her body when she’s on her stomach now, she groans while she’s straining herself to lift her head, her arms don’t help her at all really so she’s lifting her head with only her neck muscles…..she’s such a fighter, she’s trying so hard to be “normal”

She’s found her hands, bringing both together below her mouth now and playing with them, the concentration on her face when she’s playing with them, the laughter and the smiles she makes over the achievement of something everyone else takes for granted is something really unique.

As soon as she is put in her chair with her table her hands open flat out on the table searching for things, she explores more and more with her hands and it’s probably not long before we will start to see her using them purposefully…….it just needs to click.

Torill suggested that we encourage that purposefulness by hanging her dummies up and trying to get her to put them in her mouth.

Sounds simple, but nothing has been simple for Jennifer.

You can learn a lot from kids if you just sit back, switch off and try living the world through their eyes.

It’s a world where troubles are easily fixed, problems exist for only seconds and the blissfullness of naivety carries no anxiety or stress.

The way Emma treats Jennifer is inspirational, in Emma’s eyes Jennifer is just her little sister, Emma plays with her, sings to her, dances for her, listens to music with her, tickles her and even does stretching exercises for her. She comforts her, loves her and cares for her.

We’ve taught Emma that Jennifer can’t see, and for Emma that’s just minor detail, her naivety to the complexity of that problem is something to learn from.

Here’s Odrun and I continually thinking of how we can make things better, inspire Jennifer and help her development.

We over think, it causes anxiety, worrying, stress and it doesn’t help Jennifer. We get caught up in the utter complexity of all of this, and the weight of that complexity has done it’s damage.

But then there’s Emma, naive, worry free, thinks and acts almost instantaneously. She reacts to the immediate situation in front of her, with no thought of any consequence that action might have on the future, and if it does, she finds a new way.

It’s a kids world, everything in slow montion except the kid, and we never had the conscience to appreciate it!

She doesn’t over think, or over analyse, she just does it and there’s a lesson to be learned there. Sometimes the simple things are often the best…….

For Jennifer ignorance is bliss, she doesn’t know any better, for her the world is just what it is.

The comfort of our house has become a solid building block for her development.

When we’d move Jennifer from the couch to her play mat, only 3 meters away, it would take 20mins to get her bearings before she’d relax and start playing. Now it only takes 2 mins, and soon, it’s only gonna take seconds.

She still takes time when we’re out visiting people, but not too long ago Odrun took her grocery shopping, something Jennifer has done with Odrun every week for a while now. She lay in the seat on the trolley, usually quite stiff and scared for a while, but almost immediately this time she looked around, and what ever light or shadow she can see, or whatever senses she uses to recognise where she is,she gave it a big smile. After that she was relaxed, and enjoyed the whole experience.

She’s become so unbelievably happy, her toys that hang from her play area get a beating everyday, and she laughs her head off every time they swing back at her, and then she beats or swats at them again.

I bought some bells for around the house, but we’ve mainly used them on her legs. My idea was action-reaction, and it’s worked a treat!

Her kicking is as strong as I’ve ever seen, much stronger and quicker than Emma ever kicked. It’s surprised both Torill and Laila I think.

Most people never see the Jennifer we see at home, they only see the Jennifer in a foreign situation, scared and uncertain.

Her curiosity of physical objects, their texture and shape has grown enormously lately. The way she opens her hands now and strokes familiar objects, her acceptance of those objects is inspiring. The detail she’s starting to use with her hands is finally starting to feel rewarding for Odrun and I, like all the hard work, all the effort is worth it.

The girls have had chicken pox, and it’s funny that a natural human function like scratching yourself is taken for granted, but when Jennifer really needed to, she found a way…everything happens for a reason.

If she can just make that connection between the use of her hands, and the rewards she can gain by using them, despite her disabilities and the confinements and restrictions that come with them…..

She’ll have come a lot further than a lot of people ever thought this special little girl ever would.


2 thoughts on “Our special little girl

  1. She is such a gorgeous little girl and I think you’ll be amazed with what she is capable off as she grows up 🙂
    I believe that mainstream schools are the best for kids with special needs (depending on disability and needs of course). You still have a few years befor J starts school, so don’t stress, stay strong and be in the present.. yeah you know what I mean! 🙂 xx


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