Sasha started receiving DLA at the age of 18 months through the recommendation of my portage worker when Sasha had only been diagnosed with "global developmental delay".
It was only 1 month before she turned 3 that I got a formal diagnosis of a genetic condition called Sotos Syndrome (which causes overgrowth and delayed development) - described Sasha to a "tee".
In May I received my renewal forms for DLA as it is due to run out in October, one day before her 5th birthday.
Because my portage worker helped me fill in my previous form (which I kept a copy of - but obviously Sasha has progressed since she was 18 months of age) I contacted her again and she started to help me fill in the new application.
A genetic condition will always be with Sasha, although she may grow in terms of her development, she will always have this condition.
I downloaded some good forms from a website (which I mentioned on a previous message) called www.bhas.org.uk.
The downloaded document tells you what you should say and how you should say it (and the portage worker thought it was so good she took the website address for her other parents/children).
I filled in the rest of the form and sent it off, received about 3 letters informing me that they were looking further into my application.
The last letter I received was on Saturday telling me I should hear within 11 weeks and with the same batch of post was another letter from the DLA informing me that they had re-assessed my situation. Oh dear! I thought.
On further reading they have awarded me middle care rate for Sasha's personal care needs and higher rate for mobility (never received the mobility allowance before).
... and I get car tax exemption until Sasha turns 9 when I have to re-apply again.
How pleased am I that finally they have acknowledged Sasha's "special needs". This allowance does not give us a "nice" life (I work hard for that) but helps pay for me taking time off work to take her to specialist appointments and also helps pay for her ballet lessons and swimming lessons which greatly help her gross motor skills.
How happy am I?