Alice is progressing and she is now able to tell us about her world.  A special mention must be made to AV and school for helping her to grasp “don’t”. “Mummy, I don’t want lunch, I don’t like that” ….thanks – I think.

But we knew things were going too well.  An assumption of your understanding is often made when you have a child with a disability.  Along the way phrases and terminology are used without hesitation, requiring us to often translate into our own words using the delights of the internet.  Google is often a friend or fuels your worst fears.  After surgery and therapy our attention has been on school.  As soon as you enter into the world of education, despite opting for a private school, we still have to interact with our LEA.  This is because apparently, we need to get Alice a statement.  What’s that ???? (Alice’s new favourite question), I’m still not entirely sure.

A Statement of Special Education Needs – a “statement” is given to children who have difficulties in accessing the school world normally (for various reasons).  It sets out what the child’s local authority has agreed to provide in order that the child may achieve their potential.  It can cover specialist schooling, 1-1 help and or additional therapy needs as appropriate.  Early on we were told “Alice will get a statement”, “You need to start the process for a statement” and “Alice’s longer term needs will be covered in her statement”.  So probably naively we did what we were told and started the process. However. ……

Who asks for the statement – parents and or the school, but the child needs to go to school in order for the school to then say oh they need more help, let the doublespeak begin.

1. What is the process – you ask the LEA and then the collect some forms from the school and your TOD and you and then some secret people discuss it (you are not invited).  They then decided whether to assess or not.  You are told in writing and the phone is never answered by anyone that knows anything.  In certain leafy LEAs just outside London (see if you can guess) most children are turned down at least once, Alice has been declined twice.  Now I know the charming David and Nick show have to save money, but we understand that it is now almost policy to just say no, even if the answer is ultimately positive, it’s cheaper to delay it so it becomes someone else’s problem or next year’s budget. Once refused you then have to go to appeal
2. What happens if they say no – the clock starts ticking, the dates on letters become v. important (2 months from refusal is your time frame) and you need to gather a lot of information together for your case.  Chances are you’ll need a lawyer; these are very expensive (first one suggested £350+VAT just to tell us whether or not to appeal, not even to appeal for us).  You then end up at a tribunal for assessment and then another one when they’ve assessed but turned down issuing a full statement.  You will become an expert in the finer points of law and you will constantly be questioned and required to state the worst about your child, in order for him / her to be as bad as possible.  It’s all about what she can’t do, not how pleased we are with what she can do.
3. Does she really need a statement – interesting point, according to the experts e.g. Alice’s TOD its clear cut “ Alice’s needs can not be met with out a statement”, The LEA itself states that a criteria for assessment is “profoundly deaf” – hmmm lets play a game, take Alice’s CI off and see if she can hear you ? So according to its own criteria, Alice meets the level for assessment, yet they said no “did not meet the criteria for statutory assessment”.
4. So why not assess – Have we got what we wanted ? Our TA is funded, we just have to keep going back to ask “please sir, can you pay for next term?” Frankly we’d work night shifts and sell everything we have to pay for Alice’s TA she’s that good and it’s that important. But this boils down to what is right for Alice. Alice is catching up but only due to her TA, the school and her ongoing therapy.  It’s hugely costly today, but come a few years down the line and who knows  ? She may just need notes and a Dictaphone to survive school; fairly cheap from a LA perspective given she’s privately educated. The NDCS are constantly writing reports saying that deaf children under-achieve their potential, given the amount of hoops their parents have to jump through its not really that surprising. 

 We are nice people, we do our best by our children and all we have ever wanted was for Alice to succeed despite the bloody huge hurdle that was placed in her path.  She’s funny, interesting and incredibly sensitive to the feelings of others.  Joseph is playing nicely with his sister and they have big cuddles all the time.  We only want her to be normal.  If in due course she needs no help at school, I would celebrate from the rooftops but here and now I don’t want her to be another statistic of underachievement…… We’ve set the hounds running, watch out anyone in our path, you’re in the way and no is no longer acceptable.