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Living with Cerebral Palsy

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For those that don’t know the story of my 4 year old with cerebral palsy, I first wrote a post about her here back in 2010.

I was all set up to write a follow up post on our 4 year old when she started school back in September but it’s taken me this long to sit down and do it, I guess my mind wasn’t ready for it.  One step forward and two steps back is very much the mantra here.  Plus there has been many emotional frustrations for us as parents, it has been exhausting and emotionally draining.

If you look at that first post it keeps receiving amazing comments from other mothers whose children have also been diagnosed with CP and their experiences, and comments from adults themselves growing up with the condition.  Reading some of these have made me cry.

Starting with the best news is that she can walk by herself a decent distance to her standards, enough to give us hope she will walk when she’s older or at  least enough to get herself about and have a good independent life.   She may not be able to walk far unaided but to be able to walk around a home will give her great freedom.

Her Walking

The quality of her walking isn’t good when comparing to normal walking, she uses her leg and waist muscles wrongly which means she’s using far too much energy to take steps, tiring her body out quickly.  The position of her body when walking also means this will impact on other areas of the body, this may cause problems later.

The hard part for her is not being able to stand still unaided and this impacts her walking.  Imagine that you can walk but you can not stop, can you see the implications of this?  This means before you even start to take the first step you already have to know that there is something physical you can hold on to in order to stop.  This limits the 4 year old and impacts on her confidence to walk.

Some days she walks such a long distance it gives us false hope she’s progressing with her walking and then you realise most of the days are not like that.  Most of her days at home after school she’s walking around the house holding on to the walls.

We are told at school she walks better and tiredness has a lot to do with how she manages to balance herself in order to walk.  By the end of the afternoon she’s tired and her balance isn’t good.

Lack of Balance

Balance is such a simple but crucial thing not only to walk properly but to do simple tasks we all take for granted like standing as she is in these photos, helping me bake a cake for her sister.  In order to free both her hands she has to use her body to lean against the countertop, this also means she can’t beat things well unless I hold her giving her body rigidity.

She is very aware of the limitations her body has and how much she’s able to move it.  Without balance she struggles to put herself on the potty, having to pull down her trousers with one hand is not easy for her and not good when she’s in a hurry.  Imagine doing everything you do but with one hand in order to hold yourself steady with the other, or having to lean your body to free your hands.

This limits her play, she can’t play ball games with other kids, it makes her fall over a lot and sometimes hurting herself, it makes her rely on everyone else to do small tasks for her.  To be able to balance it’s so important, you don’t realise it until you see someone struggle with it.

Nursery School

She progressed well last year through nursery school, grew stronger with her walking to the point she wasn’t using her k-walker even in the nursery playground because they had trees and play equipment she could use as a stopping gap.

Her confidence in her walking improved drastically to the point she was walking outside and this was a first for her.  She was aware from an early age falling hurts, and falling on hard surfaces like concrete or wood hurts more than falling down on a carpet.

Full-Time School

This confidence changed last September when she started full-time school.  Photos below of her first day at school.

As you can see the playground is a sea of concrete with no stopping points for her.  It was decided between all of us, that’s us, physiotherapist and the school’s disability co-ordinator that for the playtime breaks she should use the walker.  This seemed like a good plan but after the first week of using it she reverted back to not walking again.

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The first weekend after starting school she refused to walk at all, not even over the rug in our lounge.  She would cry and say she couldn’t walk and would stand still fall over refusing to take a step.  This went on over the weekend.

I kept saying she was just overly tired it was a big change with the school size and doing so much.  Bikerboy was panicking which meant by the end of the weekend I had taken on his worries and I started to panic by Sunday night.

The Problem with K-Walkers

The deputy-head didn’t get it why this short use of the walker used only at playtime had such an impact on her walking, the breaks in the first week were just 15 minutes long.

What you have to understand is the walker, although it’s great to give her the long distance to move as she wants, it allows her to use her feet wrongly and she doesn’t walk properly.  Instead she uses her walker like a racing car.  She doesn’t put her feet on the ground as she should, she uses her toes as a propeller for the walker to run as fast as she can.  Her whole strength with the walker comes from the upper-body and not her leg muscles, the very muscles we are trying to make her use and develop.

Why does this stop her from walking?

Going back to using the walker as a crutch even for such a short period at a time made her lose confidence with walking unaided, made her very aware of her wobbliness without having something there to hold on to.  The more she becomes aware of her body wobbling, having no balance, the more she is conscience of her falling and hurting herself and you’re in a vicious circle again.

To cut a long frustrating story short, she is still using her walker at playtimes 5 months later.  Slowly she adjusted to walking inside the school and at home but it was very much two steps back for months.  This is the common story with children with cerebral palsy.  Frustrating and heartache for the parents to watch so much progress being reversed.

Learning

On a positive note being at full-time school has been the good progress she’s made with learning.  She has settled in and participates with learning activities well and is either on par with her peers or excelling.  She is sounding out letters and making the connections to read the word in front of her, can write her own name and recognises the letters in her name to type into a computer game she is playing.

Her motor skills are also good and she’s improved controlling small movements with the pencil.  She is ace with using her dad’s iPad and computer, knowing how to switch it on and accessing her games and can even give granddad a tutorial, very funny to watch.

As you can see from the photos on here she’s a happy girl, very smiley and extremely chatty, to the point you’re asking her to stop talking.  Even her older sisters beg of her to give them some peace first thing in the morning.

Her Anger

What she has is a fierce temper, gets incredibly angry at very small things if she can’t get them right or get her way.

For example last week during half-term I could hear her in the next room having a complete melt-down by herself, shouting out angry comments because she couldn’t draw a person on the piece of paper the way she wanted.  I just listened to see what she would do.  After throwing everything in sight across the room whilst still shouting and ranting at everything including saying how she didn’t like me or her oldest sister who was also in the house, she took herself upstairs to our room, her sanctuary, where she lies in our bed and watches kids tv.

When you meet this 4 year old and she speaks so well, often using grown-up phrases and always in the right context, making some extraordinary observations and with a memory of an elephant, smiling and chatting away so mildly to you it seems unreal that this small little being can have so much anger inside.  She reminds me of her middle sister, the one I refer to as allergy kid.

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Allergy kid has always had a fierce temper embroiled with so much anger inside.  These two kids have had to encounter a big struggle right from the beginning.  They have no choice in having to deal with the difficulties that they do.

Being An Easy Target

The 4 year was at a party a few weeks ago where they had a party entertainer playing different games with the children.  As you can see below they were playing a ribbon game where the kids could hold ribbons with a handle and play to the music.  As the game started the kid who likes to target our 4 year old couldn’t find a second ribbon and was looking around at all the other kids with ribbons and then we watched as that child spotted our girl, came over and grabbed one of her ribbons.

The same child was also the child that last year at nursery was seen by the teacher to go over to our 4 year old and just push her to the ground.  When she’s sitting down at the same table in the classroom and this kid takes something from her, she’s good at standing up for herself, she has the upper strength to defend herself and grab things back, but she can not run after them.

Facing Her Disability

A couple of weeks ago she told us at home when she wanted to play with one friend the other kid in the group said she couldn’t play because she was disabled.  She also said when they were in a large group playing a game together one of the kids said if she could stand still like a statue then she would be allowed to join in the game with them and be their friend.

Yes I do go and speak to the teacher and have long conversations the disability co-ordinator and they’re understanding of the situation but I’m telling you sitting here as a mummy-bear all I want to do is go in and defend her.

It’s frustrating being a physically able family not having any experience in this to know what the right thing to do is.  In the long run we think she’ll be ok and will be able to look after herself and may appear to be physically normal to others, not having to deal with pitying-looks or treated as if she’s also mentally challenged.

In the meantime she’s still a little 4 year old trying really hard to be like everyone else telling me how much she needs to exercise to build up strength, “…so I can catch up with my friends mummy”.  It’s hard to watch her wanting so desperately to be like everyone else, she fully understands now that she is different but doesn’t understand why she shouldn’t do what others do.

We’re In “The System”

When we were first told of the 4 year old’s diagnoses sitting next to the doctor was a woman who we understood was our go-to person when we need help with 4 year old’s problems, a co-ordinator.  This person two months later came to visit me at home, gave me a very large folder about cerebral palsy information in general and that was the last we ever heard of her.  At the time the 4 year old was very young and her needs weren’t many but as she’s getting older her needs increase.

It’s taken her physiotherapist making few demands for her to be assessed for a wheelchair and also to have a home-assessment.  At first the “system” refused his request because he had not ticked the correct box stating the ethnicity the child’s parents…yes really…they refused a 4 year old’s physical needs based on forms not completed correctly.

The school does not have the right for extra funding to help with my 4 year old because her needs are physical and not mental.  The fact that she physically needs the extra help to get about the school and to go the toilet does not quality the school for financial help with this.  If she was mentally challenged but physically able they would.  I struggle to understand this one.

After chasing and  waiting 5 months I heard from the department that carries out the wheelchair assessment.  We went along and picked out the red wheelchair above that looks like a buggy because it has big wheels and it means I can take her to the woods near me during the summer.  We’re still waiting for the wheelchair’s arrival.

The department carrying out the home assessment has disappeared off the face of the earth.  Still waiting.  I’m told the home assessment is not actually carried out by qualified physiotherapist but by ordinary social workers with no experience in physical needs of an individual.  Oh that is going to be so much fun.

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I posted about John, the 4 year old’s orthotics here.  He would personally mould inserts for her himself instead of sending them away to be done by a company contracted out by the hospital because the inserts kept coming back wrong.  He was a wonderful individual.

John had to leave his job and the country because of our bureaucratic system.  He has been married for six years to an Indian woman and they have a four year old child, all living here happily, taking family holidays in his wife’s place of birth in India in their holiday home there.  Last year they wanted to resolve the application for the wife’s British passport and John was told his wife had to go back to India to apply for one from there.  When she did so she was refused entry back into Britain full stop.  At the time John left the hospital to go to India to see what he was going to do, his wife had been in India with their 4 year old daughter in this situation for 4 months.

These inserts above were the last ones John made but then the 4 year old outgrew them, the soft padding had worn down and were hurting her feet and needed new ones.

We went back to have new ones remoulded, and the new orthotics thought she should try a new design that comes in two parts, photo below, because the inside plastic is softer for her feet and the outside would give her rigidity and support she needs.  It seemed like a good idea.  In the meantime she hasn’t been able to wear any supports.

Finally they arrive, we go for fitting, I’m not keen on them because at the top they appear to be digging into the bridge of her feet but the 4 year old seemed really happy with them and we bring them home, only now we have to buy new shoes because these inserts are so much bigger and thicker they can not fit into her shoes.

Off to the shops we go and spend a whole afternoon going through every style of shoe there exists to accommodate these inserts but we struggle.  We have to go up two shoe sizes creating the problem with the 4 year old walking with “clown-feet” where she trips over herself.  But it’s only the way we can get inserts to fit under the bridge of ANY shoe.

There I am in the shop facing the choice of boots that are very heavy, or the above trainer, both far too big.  We bring the trainers home, she wears them at the weekend for two hours to break them in, and walks awkwardly.  The next morning as soon as putting them on she complains they hurt her feet.  And here we are again, no inserts, back to square one.

Bikerboy finds a private company this week in London that makes shoes with the inserts already built into them, all properly moulded to her feet requirements.  The only catch is they cost £900.00.  Oh that lottery ticket win would come in handy right now.  There are situations where having lots of money does answer one’s problems.

All I can say after all this time is that our heads hurt having bang them against the wall so often.  I’m emotionally drained and it never feels like I’m doing enough, there are lots of things I know I should be doing or chasing up and I don’t.

The everyday simple things like getting ready in the morning and walking out of the door, going to the supermarket are not straight forward.  Lifting her up all the time as she is getting heavier takes its toll on our backs.  There are other problems she has like with her bowel which means careful monitoring of her diet.  She goes through phases like she is at the moment where she wets herself often.  I know I don’t do enough with her and my excuse is that I’m trying to secure a good future for her and her sisters by working, but the guilt is always there.

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