So we have been waiting and waiting to see a number of specialists including OT, Speech and language, they call it a multidisciplinary team of people. I was face to face with a young girl no older than 20 she asked a few questions about our boy, I was by then heavily pregnant with our third child, it was a summers day and we were sitting in this surgery with no windows like a little box room with what felt like no air to come in ! I could hardly breathe because of being so heavily pregnant ! The outcome this girl suggested was “he needs a bit of speech and language therapy that will do the trick !! “
I came away feeling like she must know her stuff but what about all the sensory overload I have read up about and I’m ticking my own boxes on this one !! So we are in the system for some NHS speech and language therapy…OK, great when can that start I’m wondering …. I get told …. “they will be in touch soon “… so I wait and wait and wait ……I’m still slightly concerned on why he runs looking sideways and he then bumps into things and why he seems like he is off balance, he hates swings, any movement style play ground activity. Anything, even me driving in reverse to park makes him scream like he is terrified … this girl is WRONG ..
And as for potty training well due to his sensory over load he likes to wear his nappy and he likes the feel of his bowel movement and that is something I am not going to write about to much as it’s not pleasant.
Still no paediatrician has contacted us or any speech and language, he is three now and started a tiny little pre school ( a private school)i thought this was best as it was small class sizes and personalised teaching, they are now at a loss on how to teach him and we are paying huge amounts for this but they still don’t know “what to do with him” their words exactly ! actually it turns out they don’t want to help him and he was excluded from the school. What are you exactly paying for in private school !? is it acess to a pool, a gym, large grounds, playing fields, the odd yearly ball where people get dressed up and drink all night ! I’m not quite sure …. But I do know private schools will not go near any child who has any slight extra need in their education. Even sports day he couldn’t cope with it and was asked to take him home as it looked bad in front of the prospective parents! So sickening .. we had to get him out of there and save our money
We found a paediatrician but a private one …. “It’s £2k for an assessment” the Dr says …. What the hell !! Something just doesn’t sit right with me paying all this money to a private doctor when previous reports were just copied notes from what I had said on my thoughts on our boy. She did recommend a ASD ( autism spectrum disorder ) assessment . I wasn’t to sure and she said it was a further £1.5k for this … this all seems utterly crazy, a family member offered to pay half the cost. I said NO!
Getting SEND help
SEND stands for special educational needs in schools and you will find most schools in the uk have a SEND department ( senco teacher ) this is the first point of call when they will ask the county council for extra funding in place for a child that needs more support in school. He was still stuck in this private pre school but he certainly wasn’t going to stay on there and we were tied to keep him in there to get access for the help with an EHCP , he was going to go to the local state school where his sister is anyway and i now know they get more help in the state sector than anywhere else. so we had to ride it out and start the process for an EHCP ( educational health care plan ) with the current senco, this is so hard to get and you need plenty of evidence to get the support your child needs. Plenty of reports and the wording has to be written in such a way to get your case believed… how can this be the case when you are desperate to get help for your child …. you shouldn’t have to get a bunch of people ( who probably cant wait for their coffee break) to believe you want to get help for your child who is struggling with the world.
SCHOOL IS STARTING
So After numerous emails, letters, reports and a whole bunch of evidence to show our our boy needs the extra help before he starts school AND WAITING 20 WEEKS !! we received our letter from the local authority …. it said “No sorry he does not apply for extra funding in his education ” ! i could not actually believe what i was reading , i was then asked if i didn’t agree i could appeal the decision …. how utterly awful with all the reports and the lengthy description that i had written on how my boy was finding the world , his life, his schooling experience actually life in general they could even say no . Was he just a piece of paper on a huge pile of other applications , i now realise yes he was exactly that and it looked like if there was no visible disability then they would not even look into it. I soon filed all my documents and demanded an appeal process to take place, we agreed on mediation … that was not a fun experience, but myself and my husband met up with a panel of people and we stated our case, he was then allowed the funding thank goodness … but how much funding was actually going to be in place when he started school? was it an hour a day was it two hours a day, how would he cope in school.
The worries of school days approaching left me in absolute fear and panic and my nights were all over the place still with out no sleep and now his younger bother was then due in two months time i was just in sheer panic mode of how am i going to cope with these feelings. My son would just sit there and not think about what is happening in the world, his world seemed so quiet and still and his little spins round the room and his little fingers that would wiggle around up in the air as he lay on the carpet repeating words from certain movies would just make me sit still with him for a bit and watch … he doesn’t care what the world thinks of him , he is happy in his own little bubble of what i call dream land .
Understanding Autism 