I try and maintain a positive outlook about autism at all times. Its not hard to do as I see the evidence of lives lived as their owners want all around me. I gain hope from reading the blogs of AutismDiva, Amanda Baggs, Alyric, Larry Arnold and many others and I see their belief, based on their own life experience of autism as a way of being.
But I won’t pretend its not hard sometimes. Not to wish for a different sort of daughter, no. That idea is not part of neither my wife’s nor my beliefs. What we do wish for is that life could be easier. Autism does make it hard sometimes. Not intrinsically I hasted to add – there’s nothing we find massively difficult about our daughter. Its _reactions_ to autism that make autism hard.
For example, we’re trying to arrange delivery of a large item to our home. Modern delivery systems seem to have dispensed with the idea of customer service. Instead they say – ‘we’ll be there sometime between 9 and 5 on Tuesday’. We ask for an exact time as we’ll need time to prepare Megan for the intrusion into her home of a stranger. They can’t (or won’t) provide it. So begins a battle of compromise until we’re all happy. Except we’re not. We’re reduced to getting an hours notice and we have to put Megan in the bath and shut the door so we can take delivery of our product without her having a meltdown. Great – Megan has to compromise. Again. the company we’re _paying_ for the ‘service’ don’t. Again.
Unfortunately, something a bit more serious than this intruded into our lives yesterday. As some of you may know we have Megan is in a mainstream school. She started last year and had a great year, making leaps and bounds of progress.
Unfortunately, both of her learning assistants left at the end of last year so Megan had to start the school year with two new support assistants, a new form teacher, in a new classroom with an increased amount of pupils.
Yesterday, one of her new support assistants gave her notice in. The school are starting to make noises that they feel Megan can’t handle the new environment.
I sat there, stunned, as they outlined all this to me (my wife’s not well and couldn’t attend). Up until now, both support assistants had been saying how much Megan had achieved and how positive things were. As far as we knew, this new year was going well. Yes, Megan was reacting to the change – sometimes negatively – but thats to be expected. The amount of new things she had to cope with made that inevitable.
And things started off like this last year but we stuck with it, _Megan_ stuck with it and got so much out of the year as a whole. She made friends, she participated in the lessons, she got gold stars for good behaviour.
And now this. We feel like the support assistant who is leaving has jeapordised Megans whole future at this school. She stated as part of her reason for leaving that she couldn’t reach Megan. This left us in bits. After being with Megan for _less than 2 months_ she feels Megan is unreachable? And the worrying thing is how much credence the school are giving this. They’re not interviewing a replacement, they’re cutting her attendance down to half a day again and they’ve asked us to ‘take a look’ at the one special school in our area.
Thing is, we already _have_ taken a look at it and we didn’t like it at all.
Why does _Megan_ have to suffer because someone else can’t do their job? Why do we have to worry that our non-verbal daughter might have to go to a school where a taxi-driver takes her and picks her up? Why should we have to again accept second best for Megan when the only reason we have to is that the facilities don’t exist? You can bet that if there were a shortage of schools generally people would be falling all over themselves to address that need.
Getting Megan into her current school, fighting to get her a Statement to address her needs was long, exhausting and thankless (Amusing side note: After this battle was fought and won over a 6 month period of constant wrangling I told my Dad we’d got everything we fought for and my Dad said ‘ooh, that was lucky wasn’t it!’ Thanks Dad.) and now it looks like we’re going to have to do it all over again.
As a blogger comrade of mine frequently writes: ‘autism its not like you think.’ To which I’d add, ‘but bureaucratic jobsworths exist everywhere and act exactly as you’d think’.
Left Brain Right Brain 
Learning support assistants are poorly paid, often poorly trained, and expected to deal with anything that the teachers don’t want to. And that’s when you get a learning support assistant in the first place.
Is there an advocacy service for carers in your area? Someone ‘outside’ without an emotional involvement can be very useful in fighting your corner with school. I’ll often go along to meetings with parents and just sit there in a suit taking notes with an expression of deep concentration. It’s amazing how that can concentrate the mind of schools 🙂
I understand wholeheartedly where you are coming from. I am officially diagnosed with Aspbergers Syndrome and I have had some serious problems trying to integrate into school. This was primarily because of bureacratic bungling and incompetence. In three words: ‘no exceptions’ policy.
Because of difficulty trying to explain to teachers the exact reason why I am more than a little uncomfortable with having a T.V. crew in the classroom, or why I would simply prefer to have some issue dropped, I ended up having a break down about four years ago. I was lucky, for I had one thing really going for me: Sheila White. She stood up for me, and used her position on the staff to actually get teachers to listen to my concerns.
After seeing how sucessful that I have been – i.e. actually graduating instead of dropping out in despair, they started adding more students to the ‘program’. And then they go and cut all the funding, because they mismanaged their budget. I truly fail to see how bureacrats come to their decisions. It certainly isn’t through logic, that’s for sure.
Fighting school systems for the right to an appropriate educational environment is the one experience we have all shared. And no matter where one fights that battle, the school’s answer always seems to be pointing to a “special” school elsewhere. Sadly, here in the States, we often have to resort to litigation to get the services that are supposed to be provided. By the time that process is over with, the child is often years behind where he or she should be.
You have my best wishes for a little more “luck” in this battle, Kev. Fight the good fight.
I’m sorry, Kevin.
The only that came to mind about the assistant’s reaction is “It’s all about her and her need to be noticed by Megan.”
What’s this “reaching” business? She has no idea if she “reached” Megan or if that is even a goal. It’s like saying you have to have deep romantic feelings for your housecleaner or she’ll leave. Autistics just don’t always open up that place to be “reached” and sometimes they are “reached” just fine, they just don’t show it the normal way.
aaargh. I’m sorry for the stresses Megan is enduring, and as a parent, totally feel for your stresses and your wife’s, too.
😦 There’s no arguing that parenting autisitc kids is difficult (and heart rending and frightening at times…). Parenting normal kids is difficult, too, but they fit better into the system.
“Great – Megan has to compromise. Again. the company we’re paying for the ‘service’ don’t. Again.”
Isn’t this just the way it is, in everyday services? Not that I agree that it should be… far from it! But this is what it is… the poor bugger who is in the minority can go to hell as long as the rest of us are happy and feel okay!
So much for inclusive society. So much for empathy… and so much for the ideals of “we’re all here for each others’ welfare”… basically nobody gives a fuck… and business doesn’t have to… it will always have more willing customers to bully than we autistics could possibly be.
I refer readers here to Dick Gaughan’s piece on “Yes, it’s business, and it is personal”.
You’re not alone. I often feel like my wife and I are just a phone call away from a day like you had yesterday. The support systems that we have in place for our kids at home and at school are extremely fragile. They can be damaged by a frustrated teacher, an uneducated aide, or simply a clueless adult. When these supports fail, it’s terribly frustrating figuring out what to do next.
I’ve realized that there’s no way to rush the resolution of these problems. They often can’t be worked out quickly. For someone with my lack of patience, it makes these times all the more stressful.
Here’s hoping that these response provide a little bit of support to keep plugging away.
Shawn
“The support systems that we have in place for our kids at home and at school are extremely fragile. They can be damaged by a frustrated teacher, an uneducated aide, or simply a clueless adult. When these supports fail, it’s terribly frustrating figuring out what to do next.”
I can relate to that, too. I live in a country where they don’t know the support systems model at all. When I moved here, my then-wife and I told the situation to the statutory bodies, and nothing at all has been done. When our daughter was born, things went weird: I developed migraines from her crying, and I was a complete mess. Nothing was done to support us. My daughter went to nursery where the staff were great, and they were keen to know more about her diagnosis (she’d been diagnosed by Simon Baron-Cohen’s team in Cambridge). They thought, as we thought, that getting the special education nursery teacher in might have some benefits.
The bitch who was attached to my daughter’s case then proceeded to acxt as if there was no diagnosis, and this is one of the things that really is ridiculously stupid in Finnish systems: they want everything of theirs respected abroad, but if you have a foreign paper (medical/psychological document or educational qualification or anything else) they immediately discount it. I have never known anything so fucked up in my life. Best is: the only real expertise on autism issues in Finland is me and my ex-wife. Seriously. We had to get a fuckin’ Finnish diagnosis, since there was “only a British diagnosis” at the time (although, I would have liked to have seen this fucking idiot woman argue against Simon Baron-Cohen in court… which is where I was going to put this cow!).
Eventually, this bitch did her damnedest to get our daughter taken into care, with a pal of hers – a social worker – who was looking to adopt a child. I think she had her eye on ours.
EVentually, things did pan out: the SENN was transferred (we complained), and our daughter goes to a prechool place that she likes, and the staff are absolutely on-side with us.
Personally I would have liked to have had my day in court. I would have loved to have had the bitch behind bars (what she’d done had been totally illegal). But it was a start getting the bitch out of my daughter’s life, I guess.
Things have to change pretty drastically before I get the feeling that I can trust the FInnish support systems, I’m afraid.
I’m sorry this is happening to Megan. As far as the mainstreaming goes, the law is ‘on your side’- if you want mainstreaming, the LEA has to go out of their way to provide it.
As for the TA… what can I say? I work as a TA, and my first job was with a statemented child with severe behavioural difficulties, multiple health issues, a ‘difficult’ home life plus undoubtedly on the spectrum somewhere, although without a diagnosis. For this, I recieved nothing in the way of training, support and so on, and I have to say, the ONLY reason I was able to do it was because I already have an autistic child and lots of this childs behaviours I could read and understand in ways others perhaps couldnt.
Someone coming ‘cold’ to autism? well I can understand why they may feel that way. Maybe you could write directly to her stating your case? the school of course may not pass it on. I was always hearing how wonderful my charge’s last TA was and how he responded so well to her, I used to worry that I wasnt connecting with him either. Not in that I was blaming the child, just not sure I personally had the skills he needed. I was wrong, but in a school situation there often isnt time for even a friendly comment from other staff to let you know how you are doing.
It used to break my heart when other members of staff- decent, kindly people in the main, would write ‘my’ child (at work) off as unreachable and seemed almost desperate for him to go to the local special school, which, in fact, he did in the end. Then there was the issue of his progress. Others claimed he had made no progress, whereas I knew he had made huge amounts socially and personally but not perhaps in academics… the all important!!
As for my own son, he went to the local special school and is doing very well. I didnt like it at first either, and applied for the other special in the area, who refused to take him because his needs were too great. I was wrong in my initial assessment of that school.
Kev, a mother who lives in my area got so much harassment from school officials when she tried to get an aide for her nonverbal autistic son in a mainstream class, she finally volunteered as a full-time aide in his classroom because it was either that or send her son to a special school. She is a single mother, and she had to rearrange her work schedule so that she could work evenings, as well as finding a regular babysitter for the evenings.
By middle school, her son was talking fluently, was keeping up with the other students academically, and was well integrated socially. He is now in high school and is getting ready to go to college.
It is disheartening that the bureaucrats are so willing to write off young children as “unreachable” in order to avoid spending a little extra money, when providing more services in the early years would actually be much more cost-effective in the long term, as well as much more effective in accomplishing what their goal is supposed to be — teaching kids!
One of the reasons I don’t like reading this side of your blog Kev, is ‘cos I end up getting upset, angry, sad etc… (Isn’t it for the same sad fact that most other people not similarly affected ultimately end up ignorant (like me) too?… but I suppose it’s like someone once said; the media speaks to its own self-interested audience).
I, like you, am able-bodied but you’ll remember I lived with Kate, who once said to me one of those truisms which hits all the more harder because it flips what we commonly understand onto its head. She said that it is society that is disabled, not the other way round.
Your story proves again how true that statement is. Unfortunately, most people will only come to understand it when affected by it… and we all are in one way or another, it’s just that society [i]enables[/i] the abled more choice and help (which proves the point).
I dunno Kev, I can only hope there is more day-to-day reward in your family’s life (as indeed all others here similarly fighting) than the battles can drain.
“Why does Megan have to suffer because someone else can’t do their job? Why do we have to worry that our non-verbal daughter might have to go to a school where a taxi-driver takes her and picks her up? Why should we have to again accept second best for Megan when the only reason we have to is that the facilities don’t exist? You can bet that if there were a shortage of schools generally people would be falling all over themselves to address that need.”
This is one of the really sad things here: that it is Megan who has to suffer. When a kid goes to school in a taxi it is actually a sign of something amiss for others to notice from their points of view. No matter how well intentioned the person with the taxi. If she can’t be accommodated reasonably in school then there’s something wrong with the way that schools are. I’m going to suggest a book to you.
The book is by Dr Glenys Jones, an educational psychologist at the School of Education, University of Birmingham; and the reason I mention it is that it is an excellent book with a lot of starting ideas not just for professionals, but for parents as well.
The details:
Jones, G., (2002) “Educational Provision for Children with Autism and Asperger Syndrome: meeting their needs” David Fulton Publishers, London.
You may have to delete this post, since it mentions a commercially available item. I post it merely to inform you, so before deleting, do write the info down.
All the best, man…
Regards to you and your family.
David
We’re on the starting end of a scenario like the one Megan is facing. Last spring, we made a lot of noise about getting our son Charlie (8 and minimally verbal) into a private school–there are some that are very good, and small, and with 300 kids on the waiting list. We are still working on the school placement (and only at a school we approve of); meanwhile, out district has turned the whole thing into they want Charlie out into any old “out of district placement.” So they want us to look at schools that we deem inappropriate from the start. One ends up feeling like one’s child is getting expelled more or less! So we are back to insisting on him being in a public school classroom with lots of assistance.
Rather than getting Mad and Annoyed, at least in front of the bureaucrat types, I try to have the Ingratiating Smile and the, we all just want what’s best for Charlie……
Hang in and hope the delivery got made in decent time.
kc
Its simply not acceptable that people who need the support simply dont get it, and when they do its often not plain sailing.
I just hope it all clears up for you, and meg of course.
At least she has a great mum and dad who are there for her 🙂
Thank you everyone. It _does_ make a difference to know that other people can either empathise, sympathise or both.
There’s too many good points mentioned by you all above for me to answer individually but I want you all to know I have read all of them and have gained a bit of strength from each :o)
We’re discussing what exactly we can do. Our options are (as ever) dictated to by Megan’s needs versus Megan’s abilitiy to deal with a given situation and thats exactly as it should be. This whole thing is about getting the best thing we can for her.
We could tough it out and in the short term thats what we’ll do. We’ll ‘work on’ the school to try and get them to see that this situation is no different from last year – Meg needs a period to adjust, especially with all the change she’s had to endure. But we have to recognise the possibility that this might not be the best situation for Meg and it might be too much for her.
What we do after that is the question. We’re going to have to think about that for awhile.
Hi, Kev, in my experience it is hard work getting a proper agreement from the school, and even harder work making sure they carry it out. It can be very discouraging at times, I know. I’m sorry Megan has to go through this.
Hi, Kevin – I don’t know what practical help to offer other than to check that you know of the organisation Parents for Inclusion who may be able to offer some practical advice/support and such.
Also just to gently remind that bumps and problems especially during the beginning of school years are not uncommon and that long-term Megan and you may be better off persevering and having a difficult term or even whole year (although I really hope not) than attempting to find some alternative route to providing her with the education she is entitled to, inclusion and all.
It’s a horrible horrible thing that’s happening to you and I’ve known it happen to a lot of different families in different situations… try and remember that it will NOT stay this bad and that not every new year (and even change of SNA) will be as traumatic as Megan gets older and you all get used to dealing with the whole shebang.
Could anyone help you with talking to the school – do you have (or want?) an independant advocate who may (wrongly) be listened to more than you as parents are – like I said, it’d be wrong but it does seem to help a lot sometimes. Why on earth do schools take almost anyone’s authority over that of a child’s parents? Anyway, it’d be one possible means to an end.
Er.
Well, all that is to be freely ignored but please remember that there are lots more of us out here who don’t comment regularly or have anything very useful to say except that we are all rooting for you and Megan and this particular lurker hopes that things look up very soon.
All the best.
(am in Manchester, btw, and heavily involved with tackling local LEAs provision for inclusion – and lack thereof, if I can help at all please just yell!)
When I read about the difficulty some families have in getting appropriate services for their autistic child, I’m always just so very thankful that we live where we do. We’ve gotten nothing but great support and help with Zoe from the first day she went to pre-school. Everyone from her pediatrician to her teachers to the specialists who have worked with her have been great to and for us. The special school she’ll be attending specializes in ASD and has a supervised bus to take the kids back and forth (provided you live within their bus zones, which – thankfully – we do).
It breaks my heart to hear about the struggles others have to face. I can’t imagine how I’d cope with having to fight tooth and nail to get appropriate services for my child. I reckon I’d rise to the challenge because that’s what I do, but what a waste of energy and time that could be better spent elsewhere.
My thoughts are with you.
Hi Kev
Been away, just saw this – How about training the TAs about autism and what means what? Wouldn’t most people like to do a decent job if they knew how? I KNOW the school ought to do that, but they never do and you know ten times what they do without a degree in education. David of Finland’s book sounds promising – maybe you can translate it into practical terms for your school.
Anyone for a powerpoint presentation with handouts?- and oh yeah, don’t foget those immortal words:
There will be a test at the end.
Thanks to Becca, Anne and Alyric who posted since my first ‘thanks’ comment :o)
We’re pretty clear on the LEA process after going through it before. Its degrading and insulting and in many ways seeks to invalidate your role as a parent but we know it and know how to fight it (Becca – and anyone else – I’m thinking about writing a few articles re: the mechanics of the Statementing/Record process and would love to get some input on this, fire me an email and we can discuss it further).
Alyric: The sad part is that Meg’s LSA’s from last eyar were fully trained. It was really a shame they had to leave (one was married to a guy in the RAF who was posted to Cyprus and the other had some long term family issues she couldn’t resolve).
We don’t want to go down the legal battle route unless we absolutely have to. I don’t want to alienate the school as we have, up to this point, had a very good working relationship with them which has benefited Meg’s immensely and we worry that going down the legal route will negatively impact Megan. However, we would do that if given no other viable option.
“We don’t want to go down the legal battle route unless we absolutely have to. I don’t want to alienate the school as we have, up to this point, had a very good working relationship with them which has benefited Meg’s immensely and we worry that going down the legal route will negatively impact Megan.”
It’s actually this spirit of willingness not to fight that the LEAs exploit mercilessly in their attempts to not have to spend on special needs kids. On the radio, my former landlady told me some years ago, was a programme in which it was mentioned that LEAs will hold off until a court battle takes place because so few will go to law on things (for the reason Kevin gives above), and it’s therefore cheaper to do it that way. Personally, I think that this is an abuse of three parties: the parents, the child and the Law. Sadly, until politicians really start to take seriously the problems of exclusion by LEA policy, this will go on as is; and I can’t see that as anything but a total lack of commitment on this issue of inclusive education on the parts of governments (regardless of political leanings) over the past 40 years or more.
Do think on this, though, Kevin: taking the LEA to court is not like taking the school to court. They are two separate bodies, and the school have shown great willing, it seems, to be helpful and useful in Megan’s education. The LEA, on the other hand, have behaved just like about 90% of LEAs in England and Wales, and are sitting on their arses waiting for you to go to law, knowing that you don’t really want to… and exploiting you and Megan in this way. Glenys’ book would be of immense help to you, I think, because it is based on the research that she did for her PhD… which was all about educational provisions for autistic kids, emphasising the issue of meeting *their* needs.
Best of luck, man, whichever route you end up having to go with this matter.
David
Applied Educational Psychologist
This is so similar to our experiences. My son Nat is nearly 16 and recently our school system changed bus companies. On the first day of school we had to deal with a SUDDEN change of bus AND driver!!! Good old Nat handled it great, though.
Sometimes our kids really surprise us — in good and in bad ways. Today, out of the blue, I got slapped. Probably not so out of the blue, though: when I took him with me to pick up his little brother, it was at a friend’s NEW house. That must have been the trigger.
It’s okay; we’re friends again. But I hate having to feel wary, the way these sneak attacks make me feel.
My sister had a similar experience recently. Last year her son was in a regular private nursery school, with an assistant he loves who has been with him since his days in the special nursery school for autistics. This year, he started attending a kindergarten run by the municipality, and my sister wanted the same assistant. But the city’s education department wanted only one of its own teaching assistants, which usually aren’t that bright and certainly haven’t had enough training regarding autism.
My sister turned to a non-profit organization that deals with protecting the rights of people with different kinds of disabilities. There, she got a pro bono lawyer that pressured the education dept. At the same time, my mother used some of her ties in the education field. Those two together got the city to agree to my sister’s request. So now my nephew has his beloved assistant again.
Maybe you should contact a rights group in this case.