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It’s All About The Chipmunk

January 16, 2010

As the title may have led you to believe, this post is all about the Chipmunk.  There have been a few events this week, even since I blogged about his positive E.N.T. visit on Wednesday!  I will try to tackle them in order, but please forgive me if I don’t quite manage this!

THE E.E.G.:

You may recall that Chipmunk went for an E.E.G. just before Christmas, to try to establish if there was an obvious reason for the auditory hallucinations and visual disturbances that he sometimes experiences.  We had a letter from the hospital yesterday morning, to inform us that the E.E.G. was normal – so no evidence of epilepsy or anything else to throw in to the mix!  Good news indeed!  Although we therefore still have no explanation for these happenings, at least we know there is nothing nasty going on.

The E.N.T. surgeon did say on Wednesday that it can be quite common in some people, or it may also (because of the visual factor) be associated with the autism.

THE SCHOOL COMMUNICATION:

You may also recall that I was immensely pleased when the school took up my request to have a ‘link book’ between school and home.  This book is supposed to be filled in by the school and is to come home on a Friday.  I then record any significant events over the weekend, and it goes back to school on Monday.  This is not only a means of communication, but also a memory-prompt for Chipmunk when he finds it difficult to recall some of the week’s activities.  He remembered to bring the book out yesterday (a rare occurence indeed!) and I opened it, to find that nothing had been written in it by his teacher – not even an acknowledgement of the information I had provided over the (forcibly extended) Christmas break.  I went to speak to his main T.A. – the class teacher is out on Fridays.  Also, his latest IEP states that this T.A. will be filling in the book from now on.  She knew nothing about it, or when it was supposed to go home, and was under the impression that the class teacher was still in charge of this.

What angered me most, though, was that Chipmunk’s physiotherapy findings – the report was received by both myself and the school two weeks ago – have also not been communicated to the people working with him on a daily basis.  The T.A. was unaware that he is significantly hypermobile, or that there is a question over his vision and his ability to gauge height/depth etc.  All rather important when she is the one supervising his movements in and around the classroom (which, incidentally, is a standalone ‘hut’ in the playground, accessed by three rather high stone steps!).  Again, not impressed at all.  The SENCO has never called to re-arrange the meeting that we postponed before the physio assessment (which he said he would do that week).  I think I shall be making an appointment with him on Monday to discuss things.  I really hate seeming like a pushy parent, but it seems that every time I relax and it appears that everything is finally slotting into place, it all falls apart again.  Maybe the only answer is not to take my foot off the accelerator, but honestly, sometimes I could cry.

THE BUDDY SYSTEM:

Moving swiftly on from the poor excuse for communication at the school, today was a great day for the Chipmunk.  We had a visit from a representative of Spurgeons, to assess him for their ‘buddy scheme’.  This involves pairing him with a volunteer, who gives him eight hours a month doing whatever he wants to do.  The lady who assessed him was the manager, and the one whose brainchild this scheme is.  She fell in love with Chipmunk, and declared that not only was he on the scheme (which will hopefully start in March and run for six months, right across the Summer) but she will also do her best to ensure that she is his buddy!  He bonded with her pretty much instantly, and by the time she left (after a little over an hour of chatting and form-filling) he was preparing to read her a story and teach her how to use iTunes!  He is really looking forward to the start of the scheme, although I have to admit it will be a wrench to start letting someone else take him out.  It’s very different from him being at school, and I’m not sure how I feel about it – but he’s excited and they promised they will go at his (and my!) pace.  So, it looks like that’s all good.

At this point, I know I had something else to tell you.  I had planned to relate four things that happened this week, and however I count the paragraphs above, it still only comes to three significant events!  I was even going to draft this post earlier on, while I knew what the other thing was.  Instead, I told myself I didn’t need to.  That it was ok.  That I couldn’t possibly forget what I was going to say.

*Brain creaking*

*Cogs whirring*

*Crickets chirping*

Nope.  I give up.  Despite the fact that I just know I will remember as soon as I click ‘Publish’, I cannot for the life of me remember that last detail!  Oh well, if it comes to me later, I will be sure to draft it instantly for tomorrow’s post!  Until then, have a great weekend my friends.

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8 Comments leave one →
  1. January 16, 2010 19:19

    Aaaah, BubbleBoo. I don’t know whether to hug you or burst into tears or giggle. I have been down some of these same roads, but here in northern Illinois. I also have lived in England and seen the blessings and the blights of the schools and medical programs.

    All I can tell you for certain is that you are not alone, and that your phenomenal persistance is your best quality in your advocacy for that adorable little boy who lucked out in getting a mum like you.

    Hang in there, sweetie. It WILL all be worth it.

  2. January 16, 2010 19:23

    You’re not being pushy, you are being an advocate for your child. Big difference, and big hugs to you!

    The Spurgeons program sounds like it’s going to be great for him! Rough on you, but again, you’re doing this for him! *more hugs*

  3. Gina Watson permalink
    January 16, 2010 20:53

    Do you feel like you are surfing the sea or white water rafting. You have a good gust of news and you start to fly or surf but the next wave is just behind ready to knock you off and overwhelm you. Chipmunk is fortunate that his mum has her wits about her and always does her best for him at great personal stress to yourself, but your motives are that he gets the best start in life and as much support as he should, Spurgeons sound really good and if a bond has been established really quickly it could prove invaluable for him, and you.

    The frustrations are endless, but you do keep your head and weather it all very well, you are brave and bold and I admire you.

    Keep going things will come right in the end. Love you lots

  4. mum permalink
    January 16, 2010 23:45

    Could you have meant to include the visit from Hollands??xx

  5. tndaisy1960 permalink
    January 17, 2010 00:44

    And I thought the U.S. Gov’t was inefficient! GAH! I’d pull my hair out if I had to put up with those cluetards. Much admiration for you, for not making doorstops out of the entire lot!

  6. January 18, 2010 00:14

    I don’t know if you saw my Saturday post; I was venting about a similar lack of communication. This time, however, I wasn’t the mom; I’m the teacher!! Gah. People, no one reads minds. For the sake of the children, talk to each other!!
    I hope Chipmunk’s teachers and other specialists get together, and SOON.

  7. gillian peacham permalink
    January 22, 2010 10:05

    Well Done Hannah! Think you are really good doing everything that you can for Chipmunk.

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  1. It's All About The Chipmunk « A Thought Bubble or Two… | Health News

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