Meeeeeeeeeee's Blog

Coping through the chaos! | February 22, 2009

So I’ve filled in the forms for Isaacs disability and it wasn’t an easy task as I had to put into words how his epilepsy effects him and how he feels prior to a turn and during and after.
Putting into words how a disability or illness effects someone is hard for an adult to do but for an infant who has recentley turned two is practicaly impossible,as the limited vocabulary of a child so small is not exactly going to give the people who make decisions much insight.
some of the questions were so hard to answer ie,how much help does he need a day? how many times ?how many minutes? what would he do if he didn’t have the disabilities he has? how many yards can he walk without discomfort or problems and how long does it take him?
All the questions apart from medication and ones for the doctor were really awkward as some days are good some days are bad,if he has had a bad day or night and had a few seizures in a row then his left side is weak and he aches causing discomfort when he walks or I carry him.
It’s hard to predict when he will have a seizure as the atonic type are rarer and don’t respond to medication as well as the other type myclonic and complex partial seizures he has ,I think he may be aware of an aura prior to the complex partial ones as he has started to stop what hes doing and lay on the floor prior to a seizure.
Some questions were also hard as he is waiting to see another specialist on march the 4th about the regression he is suffering since his seizures and what therapy he needs.
I’ve filled it in as best as I can and added a note to make them aware of any other details and information that was not on the form.
Also since filling in the forms and sending them off they have doubled his medication,so the information is slightly out of date.
It’s not very nice filling in forms focusing on what your child can do or i’llness was really upsetting.

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4 Comments »

  1. Sounds like you are having a tough time. Once they are filled and filed at least you know it’s just the waiting to be done then.
    Try not to be too upset. Write yourself a little note of all the things he can do, and do very well! I bet that soon has you smiling again. (thinking of you and sending hugs)

    Comment by daffy — February 22, 2009 @ 4:04 pm

    • daffy:thanks yes having a tough time at the moment,thanks I’ll try not to be too upset and thanks for the hugs xx

      Comment by fraggle — February 22, 2009 @ 8:44 pm

  2. Form filling can all so often be officialdom at its worst! There must be easier ways of doing things like this instead of creating added, and unnecessary, stress.
    Take care! xx

    Comment by Flighty — February 22, 2009 @ 8:49 pm

    • Flighty: hopefuly it will be sorted soon and then have to do more paperwork for a statement of special needs ready for when he starts nursery.! Lots of red tape ugh x

      Comment by fraggle — February 23, 2009 @ 10:41 am


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