Child with Autism - Happy Ending with School Provision

[Deleted User]

I have posted on here before about my two sons with ASD. One is now 13 with ASD, the other is 22 with recently diagnosed anxiety syndrome, ADHD, PTSD as well as ASD. I suspect some of those conditions align with his terrible experiences in school (bullying from both peers and staff, lack of understanding, me forcing him to go to school etc etc)

So my younger son is 10 years younger. There is the SEN code of conduct, more legal protections in education and work, so things will go better for him, we think? Wrong, it was almost exactly the same. The last couple of years my younger son has changed in character, went from a bright bouncy young man to someone who couldn't even bear to go outside. His attendance at school dropped more and more. Ultimately, it looked like he was having a mental breakdown, wouldn't eat wouldn't drink. So I couldn't make him go to school when he was in meltdown, with the experience of my older son. Of course lowering attendance meant there were threats of me being fined.., prison etc.

To deal with this, I eventually managed to get two letters (one one year and another the next both towards the end of the school year when my son just couldn't cope with school anymore) stating my son was suffering from school anxiety. The GPs weren't keen initially but over many visits they could see his anxiety was genuine and we had tried everything possible to work with the school to no avail. It didn't matter what I said, how hard I tried to reason with them as to the logic of Chris' reactions to things they did, they just refused to see the connection between things they did and his refusal to go to school. I still believe many of the school refusals could have been prevented with a little forethought. He was so close to becoming one of the 'Invisible Children' Dispatches talked about whose mothers had just given up on the education system. I didn't want that.

But inadvertently, we strayed into being able to get an EHCP. He was very bright but this year, because he wasn't attending school so much (I'd forced him in before), his marks dropped. The SENCO then suddenly started saying he met the criteria for an EHCP. With the help of NAS's Education Service (I have ASD myself and writing the EHCP assessment request letter wasn't easy) for whom I can't say enough positive stuff, the support they offered was unbelievable) he quickly was awarded an EHCP. The SENCO's support was essential.

Initially the last thing I looked at was a special school, I thought a mainstream school with a specialist unit would be the best thing as my preconception was he'd get the support he needed but still be able to do a fullish curriculum. I didn't think that would be an option with a special school. But as I looked into it, I realised 1) that education wasn't the only priority, my son needed help with personal development just as much because of how he had drawn into himself and the social skill challenges he had 2) Different special schools offered different levels of academic attainment, I found a couple that offered the basic GCSE's plus options to take more at college with support 3) Mainstream school with specialist unit attached would still mean him attending school, with all the stressors (moving from class to class, noise etc) that entailed.

So we found a really good specialist school (note I don't call it a special school anymore lol). By then we had a draft EHCP and the interventions they suggested were provided as part of the day there. Mainstream schools, even ones with specialist units have problems doing these interventions because they mean rewriting time tables and ensuring there are enough kids attending them to make them worthwhile (plus recruiting qualified specialist staff is difficult). So this school was named on his EHCP.

Initially I was told my son could be waiting a year for a place, but someone must have been watching over us or something, a place was available immediately.

He started. Within four days he was there full time (hadn't done that for two years, at his mainstream school he was only attending 3 days a week inspite of them keep trying to put him back on a full time table). He was getting pride points, he had animal care interventions, able to wear headphones attached to his mobile phone to help him keep calm when it was noisy in class (sometimes this happens with the sort of students attending obviously), he is eating lunch, doing communication and emotional literacy classes.

He is able to come with me walking the dogs (never felt confident enough to do that before), even went on a short school trip without major meltdowns. He is so much more confident, its unbelievable. He is still studying English, Maths, Science, History, Georgraphy, art and music to a similar but less pressured level than before. He wears a uniform but its all soft material so doesn't stress him out and bless, no school tie for him to lose! There are 8 students to a class, at least one teacher and one TA, usually 2. He has a keyworker who I communicate with whenever needed. School is still a little stressful for him but he is HAPPY. He has more friends than he ever had. He feels accepted for who he is. I have NO idea how this is funded, I don't believe they get any more funding than a mainstream school, (the EHCP didn't detail any extra funding) but I could be wrong.

I have written this in the hope that others can learn from our experience. There are a lot of things you are told that turn out to not be true. I hate to say it, but the magic ingredient was his marks dropping due to his lack of attendance at school, protected by the anxiety letter from his GP (and it has to be said his mental state played a part in this, he couldn't work well anymore but its awful he had to get to this state for the school to agree he needed an EHCP). Then he was suddenly eligible for an EHCP assessment. Its not something I did easily, I was terrified of being sent to prison ultimately and I SO wanted him to stay in the education system - but I also could not watch my son's emotional and psychological health continue to hit the floor.

I just wish I could have done this for my older son.

I hope this helps someone, sorry for the book.

GreenQueen

This is such a positive end to a very traumatic story. We had problems being taken seriously with my DD's ADHD, but once we got a diagnosis, medication and a sympathetic secondary school things have been much better (although we still have "bad" days!).

The most frustrating thing is how long it takes to get a diagnosis, and then get necessary treatment/support.

Well done for your persistence - it has finally paid off.

thorsoak

Such a positive post from Deannatrois - should be made into a sticky so that all those parents fighting/struggling for their children can see that there can be hope/light at the end of the tunnel.

Out,_Vile_Jelly

Fantastic update. Must be very rewarding working in this type of school and seeing the progress that can be made with a more understanding approach.

SingleSue

I found a more understanding approach in a main stream, very competitive college of all places. We had been through hell at youngest's high school, his statement of educational needs was being ignored and they too couldn't see that the little things they were doing were impacting horrendously on him. He was struggling, a ball of anxiety, harming himself and becoming closed off again.

Luckily his college could not have been more different, they listened to me, they put into place my suggestions (which were actually cheaper and easier than what was in his statement) and within a year he had gone from a student that was failing to one who had achieved A* at GCSE (his first attempt at CGSEs at his high school garnered pretty miserable results). By the time he left 3 years after he started there, he was the top student in his year group, leaving with 3 x A* equivalent at A level and a place at university and a host of offers from other universities including a top 10 ranked one (his quickest offer actually, 2 hours and 40 minutes after they received his application!)

The biggest change was him though, he went from that ball of anxiety to a far more confident, happy young adult.

GreenQueen

SingleSue, that's a really good example of why it is so important to find the right school for your child. A school that is excellent with some Special Needs students may not meet the needs of all, they are all individuals with their own quirks. So much of a positive outcome is down to dialogue between schools and parents, and working together.

What is coming through loud and clear from all of these posts is that children with special needs only seem to get those needs met if their parents shout and push the system. That's not how it should be, but unfortunately is the reality.

Mummy2cheekymonkeys

Thank you for your post. I have two sons who are 2 and 1. My 2 year old has just been refered for testing for autism. I don't really know what to expect or what the future holds. At the moment it's a struggle to know what to do or feel about the whole situation.

seven-day-weekend

I just wish more had been known about Autistic Spectrum Disorders when my son (now 39) was at school. He (and we, his parents), struggled through somehow, but what a difference it would have made had we all known what his 'oddness' meant (No-one knew much about these things in the 1980s/90s, and Asperger Syndrome was not even recognised as a condition). A school such as the one you mention would have helped him enormously.

Anyway, I'm happy that children these days are being helped (albeit still not as readily as they should be).

My son is a Team Leader at Morrisons. This is a very recent promotion, he was a checkout assistant until recently. He loves his new position, which involves problem solving, both with customers and checkout staff. So all ends well.

(However, he was a checkout assistant who could tell me about String Theory in great detail and understand the theorems in Quantum Physics).

https://en.wikipedia.org/wiki/String_theory

General_Applause

We are in the same position as you. Eldest went all through school with no help at all until he was diagnosed with Autism at 19. The youngest finally got his diagnosis aged 12 and an EHCP the same year.


Nothing more to add really except to wish you all the luck going forward.

Drawingaline

What a positive post (at least for your younger son). My oddbod is 10 and we will be applying for secondary in November. He doesn't have an echp atm, but he has always coped really well at school. Until the middle of year 4. He is finding everything increasingly difficult. His teachers are amazing with him, as are the majority of his peers, but he is really struggling with the work and environment more and more. The senco is putting in for an echp for him, if he gets it I will be looking at the possibility of him attending a new specialist school being built in the town. The specialist school for learning difficulties wouldn't be a good fit, atm I am thinking of sending him to the closest school (although not catchment) as his older brother and cousin will be there. Our actual catchment school wouldn't suit him. Far too big and far too many stairs (he has an issue with going downstairs).

It is a worry, I am hopeful an echp will be put in in place. I have literally just written one for my youngest who has various different needs, but there is a huge backlog so still waiting to hear.

[Deleted User]

Thank you for sharing this. We have a daughter aged 13 who is in the middle of being diagnosed with ASD. She is attending school regularly, but also off regularly. She is not progressing and school gives her massive anxiety, and she doesn't want to leave because of her friends. We have just applied for an EHCP, our daughter is now on the sen register at school. I don't really know what to do at this point. But your story gives hope. We will have a definitive diagnosis shortly and go from there. Thank you for sharing a good outcome because at times we just fear she wont progress at all - when she has the potential to do really really well and most importantly, enjoy school.
Thank you and all the best to your family.