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School life

“Its his first day of school – he looks so smart – he is in his tie and little red jumper , he really looks so grown up and he seems very excited to be at the same school as his sister and she is so proud him being there, we really are lucky to have a school near by who helps and supports his situation and which supports us as a family ….” this is what i wrote as a message in a little diary of mine to remember his first day!

THEN 7 MONTHS LATER BAM ……!!!!! COVID STRUCK THE WORLD!!!!

This was probably the worst thing that can happen to a child who has extra needs in school, in fact it was just pretty god damn awful for everyone in the whole world who has worried about things, but for a child who needs structure and routine this was just becoming extremely hard ….he had just started his class and made a little friend and was happy to go into school.

Home schooling the government says will be the case for all uk children !! OMG … But phew…hang on he has an EHCP In place so surely he is allowed to carry on learning in school ?? no no no i was told , his class was empty so i was told and he would of had to be placed in with other children of all age groups and the teachers suggested it would be better he stayed at home to learn with me, along side his sister and his youngest baby brother … i was about to be hit with the worst situation EVER! i wasn’t a teacher ….

COVID WAS THE WORST .. we did 5 months of home learning , i cried everyday, sometimes all day ..i just couldn’t cope with the amount of work , noise, mess, sandwiches to make , toilet training , house hold chores …god the list was endless…..i had a weekly call from his one to one teacher to check in with us on a tuesday for 5 minutes, in this time she told us to count the clouds outside to relax him !! and my husband went straight back to work and had just one week off … we cant actually discuss covid as it effected us in such a way and so many people in different ways i cant have a discussion on this with him its too hard for him to understand.

Covid meant that all doctors appointments were all cancelled, moved and delayed so his assessment we had been waiting for for an ASD ( autism) assessment was now delayed for over a year and we had waited a year already.

In this time we had the doctors secretary who kept in touch, all through the NHS . But we couldn’t speed up any process of getting to see the actual doctor. Doctors were working very hard coping with the covid outbreak.

After a lovely relaxing summer of no homeschooling my children returned to school from September 2020 to December 2020 this was now a year 1 class for my son, so a new class room, he has basically missed the whole of reception like all the other children so he has now a new teacher and all new rules, bubbles, no hugging, no touching, wash your hands alot and doors open , windows open etc…. he seemed happy to go back and i never had trouble getting him in either … i wonder if he even realises where he is going everyday . i would collect him everyday 10 minutes early as he couldn’t wait in line and would jump about and not do as the teachers wanted him to do, like all the others! His one to one would tilt her head everyday and tell me it wasnt a good day and he was struggling, this seemed to be an every day occurrence and all i saw was my happy little boy run out of school into my arms and cuddle me. He was happy, so i was happy, i didn’t really take much notice of the negative Nancy that she was being, she helped as much as she could or wanted too.

We did a whole term then when January 2021 HIT WITH COVID AGAIN !!

Schools were closed again ….. this time i insisted he was at school , i had heard there were non-key worker children at school in the lock down period and i was furious that my son was being neglected .How dare they! He was then put in class with 9 others and i suppose it was quite nice for him but his negative Nancy teacher was still just not very proactive with him and that made me sad inside, she was missing out on how very special my son is and how clever he is and his memory is so so good but his speech was so behind he was just silent or he cried and screamed to get heard , this was the only way he could communicate. It was so sad to see him struggling, she wasnt best suited to my son for learning and im sure she realised the challenge was just too much for her.

We continued the schooling situation until july and we then had his EHCP REVIEW , the school now say “they can no longer meet need” on his papers and they feel they are babysitting him !! after all that, along with covid we now have to look for a new school for him ….where do i start …how do i start and COVID would not let anyone in their buildings to view the schools….

As his review papers came back from a panel discussion which we didnt not sit in with or we were not allowed to … they checked through his papers and suggested an AUTISM SCHOOL . We still had not yet had a formal diagnoses on AUTISM so how can he be put into a school like this and mainstream quickly gave up on him. That was a very very sad day for us as a family and my daughter too, all her friends had their siblings in school and she was wondering on why he had to leave, we soon had to tell her but only once if we had a formal diagnoses of AUTISM.

THE DIAGNOSES OF AUTISM

The doctor says he fits the bill of an Autism spectrum disorder…. i will never forget those words hit me in the heart and crush me a little bit…. well ALOT! i had gone on my own aswell with no family support and due to covid the numbers of people being in the room didn’t allow it . An hour after a long questionarre and a little puzzle test I was then told to join an autism group on line and on our way we go……. is that it then ? i was thinking now what…. my son was more concerned about having my iphone to play with and nothing had changed that day apart from my heart actually hurt a little bit and felt like it had been crushed … it ached.. i felt so sad….my son didn’t know, he just was laughing at a youtube clip he was watching so i quickly had to get out of the doctors surgery and get back to the car when i burst into tears … my son asked me what was wrong and he came to cuddle me … that was so so lovely and he was understanding emotions and could see i was sad …he then demanded a pack of sweeties…. and that was my next challenge… no time for tears and to just get on with life and forget the words that were just said to me in that room !

WE HAVE BEEN ACCEPTED FOR A SCHOOL – A SPECIALIST SCHOOL FOR AUTISM .

This was for an immediate start and i had heard there was no other places in the 4 schools in our area which specialise in his need….only 4 !!! i was very worried about this, there were children in there who had more specialist needs than him and some children didn’t even say anything, they couldn’t communicate , how was he going to make friends, does he want to make friends, this is a big new change for him, for us and we really don’t know how this will be and every day is a new day, new beginnings and time will tell…. we are in our third month now and he seems to be loving it, he has made a few close friends and is now talking and communicating and even going on school trips and seems to have mastered mine-craft on his pc and we can see that he is massively intelligent in computers and building things…. he is so quick at mastering the computer and how it works, he is faster than me! his brain is super fast and we can see immediate change in him from now being in a school with 9 other special children in his class but specialised teaching skills and pretty much a teacher each per child… i’m hoping this specialist school will bring out our boy and teach him things the other school never did , as they were pretty much just baby sitting him and the old negative Nancy left the school apparently pretty much a month after we left….funny that!

He is onto way bigger things now and i am beginning to feel like being Autistic is a pretty cool thing to be in life …. 🙂 our journey continues..

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OUR VOICE

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 .

The quietness

There’s something about being in the mountains and the silence it can bring to your mind or the swishing noise of skiers gliding past you . We took our children to a beautiful ski resort , he even tried ski school and managed it !! ( pre covid times though of course ) we will go again soon as I think the ski therapy of balance and leg work really helped him and of course he didn’t need to use many words as the teachers were French so he just listened and some how worked out how to ski ! I was pretty amazed with him . It’s definitely something to try with a child with autism , they can do anything if the teaching is right and the support is there for them.

It’s a long line

Lining up the toys – is it a sign of autism or is it just trying to be super organised and tidy if things felt chaotic. It’s one of those things a lot of people ask, it is worth watching to see how your child plays with their toys, if they pretend to zoom the car round the room or choo choo the train or if they just like to line the toys up and look at them. My son would spend hours lining up toys, cars, fruit, my perfume bottles and building blocks but he wouldn’t play with them in a playful way. He was very proud once he accomplished his line though.