Saturday, 12 April 2008

The Worst Year of My Life

This sounds like a rather depressing title for a blog entry but really it's about realising the inner strength we all have inside ourselves to cope when things are at there worst and realising that you can get through it and come out the other side however bad it may seem at the time.

Once Josh got his official diagnosis we started the statementing process. We could have started it earlier had we known how the system worked but we thought the school had to do it and the school said they couldn't start until he had been formally diagnosed. It was either Roz or Claire from the DATA team (autism diagnostic team) at Macclesfield Hospital who told us that as parents you can start the statementing process at any time if you feel your child needs extra help in school or nursery whether they have a formal diagnosis or not. She said we needed to send a letter the the LEA explaining why we thought Joshua needed statementing. She explained that it helps if child in question has a formal diagnosis and if you can get backing from the school too but that isn't absolutely necessary. However as Josh had both then the LEA would be more likely to say yes to assessing him to see if he was eligible for statementing.Now I know some people who have sailed through the statementing process and had no problems at all, but for us it was a incredibly stressful made all the more worse by an un co-operative school and an even more un co-operative teacher (more about her later) Add to that an incompetent, manipulative, unmovable, inexperienced caseworker from the LEA and you can begin to see what we were up against.

I was advised to get in touch with the National Autistic Society and I was assigned a lady called Jo (who is another angel disguised as a human being) she helped me write the letters I needed to write and proof read everything I sent to the LEA to see if there was anything I'd missed or needed amending. Jo recommended that we hire an Independent Educational Psychologist to go into the school and assess what Joshua's needs were in the school environment. The NAS have a list of the Ed Psycs they recommend, ones who kind of specialise in doing these sorts of assessments on autistic kids for the statementing process. They are very professional and will go to tribunal with you (if it gets that far) and will help you argue your case. The one the NAS recommended in our area was fully booked up and couldn't take us on but she recommended another lady called Ann Marie who turned out to be another angel that touched our lives and I think I would have been locked away in the funny farm a long time ago if it hadn't been for her support.

What they don't tell you when you start the statement process is that the LEA have a limited budget for providing help to SN children in schools. So they will go into school and assess your child but then they will offer the minimum amount of assistance and provision they can in order to prevent spending their budget. They will swear until they're red in the face that what they are offering is what's best for your child and will spin you all sorts of stories to support their decisions. If we hadn't had Ann Marie to give us the benefit of her experiences and providing us with the perspective to see it from her side we'd have been brain washed into believing that what the LEA was saying was true. As we'd never seen a statement before when we received the first draft from the LEA to our untrained eyes it seemed fabulous and looked as though Josh's needs were all covered but when we showed that same statement Ann Marie she pulled it to pieces.

For example things which sounded good to me like "Joshua would benefit from access to Speech and Language Therapy" made Ann Marie really mad. She said "yes, he would benefit from it but that doesn't say he has to have it or how often. The SLT could see Josh once a year by that and still be legally fulfilling the statement." Now try and pin the LEA down to changing that sentence to say something along the lines of "Joshua needs to have regular access to Speech and Language Therapy which should be a minimum of once a month" and see how far you get!! In the end, after taking the LEA to two tribunals, I think we got "Joshua would benefit from continued access to the Speech and Language Therapy Service, as deemed appropriate by that Service."

We fought against nearly every written word of his original statement. I lost count of the amount of meetings we had with the LEA to try to agree on the details and how many hours support he would get. In the end going to tribunal was our only option as we'd got to a point where somethings were agreed on but we'd come to a stale mate over the remaining issues and it had become obvious that neither of us was going to budge.

On top of all the stress with the statement and going to two tribunals (the LEA messed up after the first one and we ended up having to go back a second time) we were also having problems with Josh. Josh's teacher that year, we'll call her Mrs. X was an absolute nightmare. Most of the other children in Josh's class found her hard to deal with, so for Josh, she was just the worst teacher he could ever have had. Mrs X would be as nice as pie one minute then shouting and mad as hell the next. Josh doesn't like shouting at the best of times, add that to the unpredictability of not knowing when she was going to erupt you can understand why she screwed him up.

Other things that didn't help the situation were things like:

Josh still didn't have a visual timetable in school even though we'd been pushing for one for over 3 years. Although he had his calender at home which told him what days he was going to school, he didn't have anything to prepare him for his daily routine once he got into school.

Because in year 3 he was now a junior Josh was having to go into school through a different entrance which was around the other side of the school however his classroom was still in the infant part of the building so he had to walk all the way through the school back to the infant end to get to his classroom. This confused and upset him no end and often I couldn't get him into school unless I walked down the corridor with him. Mrs X didn't like that and we ended up having an altercation about it.

When Josh started in Mrs. X's class she admitted to me that didn't have any knowledge or understand of autism and instead of taking the opportunity of the 6 weeks holiday to look into it and research it before having Josh in her class she decided she would wait and "learn through Josh." As a result of this inspired decision (please note the sarcasm here) Josh spent the entire year completely distressed on on edge. He had to be repeatedly taken out of the classroom by his poor one to one on a regular basis each day in order for him to be able to calm down enough to be able to rejoin his class. I think he ended up spending more time walking round the school with his one to one that year than he did actually in it learning anything!

The frustrating thing was that no matter how many times I tried to explain to Mrs X that she could make hers and Josh's life easier by preventing the blow ups in the first place just by providing him with an autistic friendly environment in the classroom, she wouldn't have it and was not prepared to listen to anything I nor Mrs F (JJ's one to one) had to say to her. Mrs X's response was "I already work a 70 hour week! I couldn't possibly do anything more for Josh that what I am doing already" I was so worried at one point because I really thought we were going to loose Mrs F because of the ignorance of Mrs X and the effect that was having on her too. Mrs F was the only thing that was keeping Josh and me going and if she'd left I think I would have gone under. Mrs F is another angel. She was like having a Grandma in school to watch over Josh while I couldn't.
When it came time for Joshua's assessments by the LEA's health professions and by Ann Maire Mrs X didn't like it. She felt these people were judging her too and she made life very difficult for them. She took a particular dislike to Ann Marie and was not only incredibly rude to her, she also refused to allocate any time to speak with her about Josh and then prevented her from spending any time talking with Mrs F who really wanted to help and just wasn't allowed to. I know this really upset her at the time as she felt she had let us down.

The effect being in Mrs X's class had on Josh was devastating. Every day he would come out of school and say he'd had a "Red Day," He would say that he hated school and wished that he was dead. He would then say he wanted me to die so that then there would be no one to take him to school any more and he wouldn't have to go. Josh was a ticking time bomb that year, the slightest little thing would cause him to erupt in a frenzy. He would bang his head on the nearest hard object, he'd stamp up stairs and slam his bedroom door then he would stand behind it to prevent me from coming in but he would continue to bang the door with his foot or his head I'm not sure which. At the same time he would rant about how he hated being part of this family and he didn't think he should live with us because he thought we were aliens and that he just wanted to die so that he didn't have to be part of this world or our family anymore. Now I'm quite thick skinned and I try not to take things like this to heart as I know it's his anger and frustration talking and he soon changes his mind once he's calmed down but I still find it heart breaking to hear, it's not something you expect a child of 7 to say no matter how bad their day has been and I just want to take it all away from him but I can't. What really upset me and frustrated me the most was that it could all have been avoided if his teacher had just taken the time to listen and put into practise what people were telling her.

Even when the statement was all sorted (2 tribunals later) and all Joshua's needs were being addressed in his statement, I still had no power to make the teachers carry it out. I doubted that Mrs B even read it let alone made any attempt to change anything she was doing to comply with his new statement. It was a very hard, upsetting and frustrating year for us all and one I never wish to repeat.

Luckily the year after that Josh had the most fantastic teacher in the world ever. After Mrs X, Mrs S was a true gift. I lost count of the amount of times I told her I loved her and I think her husband was getting rather worried by the end of the school year! :-) The first time was when she told me that she could tell when Josh was starting to get worked up about something and all she had to do was lean over him and a piece of her hair would fall forward. Josh would notice the hair and start playing with it and he would calm right down. It was something so simple and yet it made a huge difference to Josh. I could have kissed her! But instead I just said "I love you" Both Mrs. S and Mrs. F couldn't help laughing me, but it was just lovely to hear that Josh finally had a teacher that understood him and could read him and knew how to defuse him before he'd even realised himself that he was getting agitated. Mrs S gave me back my son and made me realise the difference a good teacher can make by doing "nothing much really" (her words) other than taking the time to understand about autism and I will always love her for that.


Bee said...

I started reading that post but couldn't read the whole thing, it reminds me too much of how things are complicated here too, and how our children don't have access to all they really need!... I don't want to relive that! But I read the end because it is a happy ending!♥
BUT on a happy note, my son Noah goes to a school for autistic kids for a little less than 2 years now, and he has made great progress there. They are wonderful and really tailor the teaching to each kid, and their goal is to mainstream him when he's ready, we are blessed to have found this place (thanks to awesome previous therapists...). :-)

With April being autism awareness month here, autism has been on my mind a lot....

Inspiration Alley said...

Fiona, I think every mother of a child on the spectrum will relate to this. Ashleigh came out of school in year9/10 because the school admitted to me that they could no longer ensure his safety due to extreme bullying which had resulted in a broken wrist. By the stage he came out, he was in effect having a mental breakdown. He spent a year when he regressed to such a stage that he was little more than an animal and didn't communicate other than in grunts.

I had the total support of the EP and the Consultants for a statement, along with the Deputy Head of the school, although not the SENCO who told me that he'd have a statement over her dead body,so you'd have thought I would have had an easy ride. The LEA claimed to support me at every stage but used every delaying tactic in the book. I could have had a £150,000 a year Autsim Specialist placement but all I wanted was for them to fund his education from home, which was the recommendation of all the professionals. It took me 18 months to achieve and the LEA only conceded a day before tribunal when we had a mediation meeting with a wonderful SEN Lawyer who shook his head in despair at the way we were treated, whilst trying hard to appear neutral.

That has not been the end of the problems, but one day, when I'm feeling strong enough, I'll blog about it. All I will say, is that in our case, the truth of the situation was eventually revealed at a higher level, not directly by me, I might add, and a number of people resigned for personal reasons a few days after our story became public. I just hope that our difficulties will make things easier for other families in the future, although, unfortunately, I somehow doubt it.

SammieJay said...

I used to be an educator, but had to leave for many reasons -not least of which was not being able to cope with incresing numbers of colleagues who basically couldn't give a damn. Those who truly care about children and see and treat them as individuals generally work crazy hours to try to give each individual what they need and do so willingly -but at what costto themselves given that they receive so little support. I have so often been appalled by so-called specialists prevaricating and not really knowing what to suggest -or fudging the issues and drawing out the process. It is unreasonable and unforgiveable.
Your account is compelling. I look forward to reading the next installment.
SammieJay x
P.S I'm glad you liked the prize x

Goldie said...

Thank you so much for visiting my blog! I have been so overwhelmed by the support I have received already from others who are also blogging in April for Autism Awareness. We just recently began this journey and so to find a "community" has been so meaningful.

I cannot believe how complicated and difficult they made things for you! I had no idea! Early Intervention has been a relatively easy process for us so far. I knew once you got to the school system it got more complicated, but I didn't know it was that infuriatingly ridiculous. THINGS HAVE GOT TO CHANGE!!!

ScrapMomOf2 said...

Oh Fiona, this one was tough to read, because your frustration really came through. How awful to have to go through such a rough year, and how unfair. Thank goodness for those angels that have been there when you really needed them!

Lee said...

Wow!! I have tears in my eyes just reading's something that I have no idea about!! I mean, I understand there are "struggles", but to really understand the depth and scope is so compelling!! I applaud you and send so many hugs for the mom that you are!! And for the mom that you unwittingly are for so many kids that will follow in that school!! You are one of those who truly will have made a difference in this unfair world!!!

Cazzy said...

Fe you have been so busy, and it must have been hard to get it all down.

Well done you, and Josh and thank goodness that awful Mrs X isn't around.

I had problems with my son, not autism but dislexyia when it wasn't recognised by the County Council. I was talking to someone at work about him and he suggested that my son should be tested, he was unofficially diagnosed with Dislexia. His first teacher had ignored him (in the village school he attended there were only three classes) and he was two years behind when he got to the middle class. I talked to his teacher, Hilary, and she was wonderful with him and he came on well. The headmistress, who also taught the upper class, didn't like the amount of attention my son was getting and when he got to her class I don't know what happened but he threatened to cut his wrists a few times rather than go to school.
Now he won't admit he has the condition, he says he was just lazy, so hasn't tried to get help. At secondary school he needed special help but it had such a stigma, going to special classes. That is why I think he denies it now, and we have had lots of problems over the years but he is grown up and 30 now, I am so glad he is still with us.

Shh-Shh said...

aahhh ....I remember this was a terrible year for josh! To see the change in him that year was devestating!!! And heartbreaking to see what you as a family were going through! You showed me some of the documents and I remember feeling extremely frustrated and angry!
For those that dont know our children go to the same school....I have had some run ins with the school.(there is a bit on my blog about my issues...wont go into that now... this is about gorgeous Josh!)
Basically if your child is not main stream this school is ignorant and arrogant to the extreme.
I so admire you ....
Hero, Angel, warrior is what you are.
luvs ya

Glitterpuss said...

Your strength is amazing and empowering. Fe fight all the way for what you need.
A former work colleague of mine had premature triplets and due to the early births one triplet has autism and another has cerebral palsy.Debbie read everything she could get her hands on about Autism and fought hard to get the best for Leon - like you I don't know where she gets her strength from. Due to Debbie's perseverance and wanting the best for Leon he had came on leaps and bounds.I haven't seen her for quite some time now though.

Josh sounds like a lovely wee boy



jay670120 said...

Fiona gosh what an eye opener . I have had kids that have sailed through school and mixed right in with teachers and pupils alike so not really had any experience like this at all. I feel for you as i would have been so stressed that there wasnt help sooner for my child. Glad you found good teachers in the end & things seem a little better. thanxs for sharing x

Just call me G said...

Fe, i love Mrs S too... even though I have no knowledge of her other than what I have read here.!!

Yes like others I have a tear or two for the struggles you and Josh... and of course the extended family have had to go through which were totally unnecessary .

I hope Josh continues to go from strength to strength...

CraftyC said...

Your story is so much like mine, the LEA have until May to reconsider his application for statement as ordered by the tribunal. He's had all his assessments now and we can only wait. I do not want my son to continue in Mainstream school, they just dont understand his condition however hard his teacher tries. My son is on holidays at the moment but he such a happier boy here in a stable enviroment, too many changes at school and Asties do like structure!!

Mrs. C said...

Oooh, what an awful teacher Mrs. X was. I know a lot like that.

I know a few like Mrs. S.

Mostly they're like Mrs. X though, so we homeschool one of our sons on the spectrum. The older one (13) is at public school. It really is all about the staff. No matter how much money you throw at a problem, if you have an uncommitted or plain old nasty teacher the child is going to suffer.

I'm sorry to see how Josh suffered with Mrs. X!