Ten Steps Ahead

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Through out this HH journey I have come across a lot of helpful professionals who have made life that little bit easier by listening and pointing us in the right direction for appropriate help. Even so I find I have to constantly be ten steps ahead of everyone else. Faith, as I’m sure all our HH children do, has numerous appointments with many different professional teams. Which means as parents we have double or triple the amount of chasing to do.

This week alone, I’ve been chasing appointments, test results and instructions for reducing medication. When you are already exhausted and stressed trying to cope with excessive seizure activity and increased emotional/aggressive outbursts, a forgotten appointment can sometimes be the last strand.

Then on top of everything else, we have a massive booklet come in the post today. Indicating that Faiths disability allowance is up for renewing. Instead of just having something to tick that her condition has not changed or improved, we have a bible sized book to fill in. As I’m sure you are all aware, these forms are not the easiest things to fill in and take a fine technique in getting it just right.

Next week Faith’s annual review for her statement of educational needs is due. I have been sent the school’s opinion of where she is and what plan she needs to be able to continue in mainstream school. My job is to read the plan they have sent and write what needs I think she requires and whether I agree with what they have set out. Faith has one to one care, which we have been very lucky to obtain as I know many families who have not managed to get it for their children. Therefore it is essential that this form gets filled in appropriately to ensure she keeps her much needed one to one.

So from one parent to another, I congratulate all of you because you are all doing a wonderful job in juggling so many different needs for your child and ensuring that all the ‘t’s are crossed and ‘i’s are dotted. CHEERS.