The rainbow spectrum.

A room full of faces with stories too tell,

children that crash, children that yell.

Some of them tired, some of them beat,

there’s coffee to sip and cake to eat.

Each story the same, each child so different,

battling parents, ready to implement.

A moment each month to stop and share,

surrounded by people that actually care.

The sun is too hot, the sky is too blue,

finally people that know this is true.

In a world full of face’s where nobody see’s,

I sit in a room, and finally feel free.

The fight begins…

I am a 33 year old thinker, I can spend hours running thoughts through my mind.  By now I should have learned that writing them down always helps, but apparently not because I have been festering over this thought for days!

A few days back I recieved my daughters latest OT (Ocupational Therapist) report, not much had changed since her last review, except the tiny minut sentence suggesting that her behaviour might be an indication of learning needs. This is the first time any of the professionals have recognised that my daughters behaviour might not be due to low confidence (this has been their argument up until now).

There are tons of blogs all over the internet from parents all with a very different story to tell.  Today I am going to publish my post to fall in among the rest, and if just one parent/guardian reads it and finds comfort that they are not alone, then I will consider it a success. 🙂

Lets start with a  little background, my lovely daughter who I will now refer to as Daisydoo (just because it is the cutest name ever, but I would never be crazy enough to actually call my child that!) she was as perfect a baby as anyone could expect. Within the first week she was sleeping through the night, she was a happy and very contented baby. She very quickly adapted to routine, of course looking back now it is clear to see that she did in fact struggle if the routine was changed. She has always been a great sleeper (of course we have like every parent had the odd nightmarish night where sleep completely eluded her) however she was just 15 months old when she had her very last day time nap, it became clear that Daisydoo loved sleep, but didnt need a great deal of it. No matter how much we do in a day, tiredness just never seems to hit her!

The first indication that Daisydoo needed a little extra help was her speech, at 2 years old she had a vocabulary of only a few words. It is also important at this stage to say that Daisydoo didnt actually care, she would not get frustrated (in the way we imagine frustration to be)  because she couldnt communicate, instead she expressed her frustration by just walking of, she had a very laid back attitude to life!

Between 2-3 we started to notice Daisydoo didnt have the same mobility as other children her age, her movements were calculated, slower and she would spend ages observing the children playing but never participating herself. We attended a Mother and Toddler group, where every week she would attempt to play on the small slide, first she watched then she slowly got closer until finally she was climbing the three small steps, this is where it all went wrong. At the top of the slide, she wasn’t able to position herself correctly, she would hold the sides and sit back….into thin air, landing on the soft mat on the very few occasions I wasn’t there to catch her! Every week I showed her how to do it, everyweek we watched the other children, and we talked about how they did it, but she never did manage it, and even now unless the slide has a platform to sit on at the top (even this courses her difficulty) she still doesn’t know how to manoevouer her body to get down the slide.

Pre-school uncovered further mobility issues, Daisydoo struggled to get herself of the ground from the sitting position, she wasn’t able to express her needs (resulting in lots of washing) and she was still not speaking (although by this point her speech had started to develop at home). So we were reffered for assessment to the educational psychologist. Of course Daisydoo was still young and so her behaviour was put down to her having low confidence, lots of things were put into place to help to encourage her, but weve just started in year 1 and the problems are still apparent (although, thank fully she can now express her needs).

It would be wrong of me to say  that nothing has changed because in facts lots of things have changed. Firstly, after mentioning to the speech therapist that Daisydoo was unable to do any kind of blowing (straw, blowing bubbles) we were given some excercises to help her to control her tongue, this helped so much, once as Daisydoo was able to control the movements of her, jaw, lips and tongue speech literally tumbled out, for a long time we were stuck on words with just one syllable, until finally walking to preschool she managed a very clumsy ‘hip hip horay’ (I can still vividly remember the exact moment 🙂 ) of course once as she had mastered stringing two or more syllables together there really was no stopping her. However I also noticed that Daisydoo would only use a word if she knew exactly how to use it, she had to understand the purpose of the words she was using, rather than simply copying them. Daisydoo’s latest speech therapy report indicated that she now has a vocabulary above her chronilogical age :). So clearly the hard work of constant repitition and constant describing and talking paid of we now have ourselves a complete and utter chatterbox, who uses some amazing words to express herself ‘that dinner was delicious mum’ is always one of my favourites! Unfortunately her teachers look at me as if I am mad when I mention her constant chatter, because at school she is still not talking as much as she can (hopefully the day will come when the school will wish for the quite little Daisydoo back instead of the chatterbox, we’ll see).

Anyway lets get up to date, Daisydoo still has mobility issues, she has hypermobility throughout the body. She also has issues in Gross Motor Skills and Fine Motor Skills, Motor Co-ordination and Visual Motor Integration,in the latter two her recent scoring is 78. At this point I don’t know what any of this means, she has not been diagnosed as having any kind of learning needs (although this has now been hinted at).

My biggest concern for her at the moment is that her low scoring in Motor Co-ordination and Visual Motor Integration means that, holding a pencil and using a pencil causes her massive difficulties as well as this she is not able to transfer what she percieves in front of her accurately into motor movements. Basically writing is a massive struggle for her, of course writing is also a foundation of the education system…this is why, on Thursday of this week I have an appointment to speak to the sen at her school, about getting her assessed again, in the hope that they will see that Daisydoo needs extra help, I know I/we (Daddy too!)  have a fight on my hands, perhaps the biggest fight I have ever had in my life…but im ready for it (I think)!!!