I have recently gotten a crash course in deep breathing exercising and stress management techniques.
Don’t get me wrong: I am used to high – stress situations. In fact, some might say that I do best in high-stress situations. And I have been through some high stress situations. But nothing I have experienced in my entire life would prepare me for the process of getting my newly diagnosed, High-Functioning Autistic (HFA + AD/HD) child an IEP.
Now you must understand: I only want an IEP for two purposes. ONE: my insurance (which is currently covering hours of ABA therapy, mental health counseling, physical therapy, occupational therapy, and social skills classes) requires that he have an IEP in order to qualify (insurance-wise) for these therapies. Right now, we are getting the coverage, but it is a temporary status while we wait for the IEP to be finished. TWO: Christian desperately needs to be in a different school next year (see the following post). In order to accomplish putting him into a program that will better suit his needs, I need him to qualify for the McKay Scholarship. And — yup, you guessed it — he needs an IEP to qualify for a McKay Scholarship.
However, the school does not understand the definition of an Autism Spectrum Disorder. Because he is “high functioning,” he is able to maintain decent grades. They argue that if the student’s grades are decent, they won’t qualify for an IEP, while we (his parents and autism team) assert that there are developmental and social skills that are not being met.
It’s becoming more and more apparently they are going to outright refuse to give him an IEP. So today I hired an advocate, and, if necessary, I will then hire an attorney, because my child absolutely meets the qualifications for an IEP/504. The next meeting is scheduled for the 5th of March, and I really need this to work out.
In the meantime, I am fighting every step of the way for my child, trying to protect him from what is going on every day at that school. The trauma that Christian has endured this school year from the over stimulation, the lack of accommodations, the crazy schedule, the bullying students and the bullying teacher is literally destroying my son a little bit every day. I am so concerned and worried for his physiological and psychological safety it is actually terrifying. How does one continue sending their child to school every day when they fear for their child’s well – being?
I am so tired. So very, very tired. And it’s only been the preliminary meetings. Will let you guys know how it shapes up.
My Puzzling Piece: A Glance Into MY Puzzling Existance 
That pains me to hear about your situation. I have worked in school districts (in Canada, BC) and it is required that a school have an IEP for all kids with ASD here. It pains me that you have to go through all of that to get what your child deserves and needs. There is more to school than just grades. No wonder you want him out of there.
LikeLike
I haven’t yet posted an update, but I will soon. I was finally able to get him an IEP, SERIOUSLY the last week of school, after hiring an advocate and an attorney. Now that summer is here, Christian’s doing a bit better, being promised that he will NEVER step foot inside that place ever, ever again. Thank, thank goodness.
LikeLike
This text is priceless. When can I find out more?
LikeLike
I hate to say this but, to my knowledge, there are no ‘types’ defined regarding the autism spectrum: it’s just ‘autism’… a whole spectrum of autistic states. That would be my only issue with the article actually.
I have way more of an issue with the content – not because I think you’re wrong, but because I’m getting fed up (as you probably are) with this whole issue of having to fight with the local authorities to get services that one’s child has a right to at least be assessed for, regarding the appropriateness of those services. My daughter’s mum and I had to fight for ages with the local education authority and school in order to get anything understood about our daughter’s situation. Although we are no longer together, we still are battling against authorities as a team to try and get appropriate services for our now-adolescent daughter. These services are still, as they were in the early years of our daughter’s life, not forthcoming. Everything here is still a battle. It is a battle for me alone to get even support that is the minimum that the local social welfare office will give in order to fulfil the criteria of doing the very minimum they have to do in order to keep their jobs.
I’ll give you three guesses as to where my daughter, my ex-wife and I live. The United Kingdom? No. The United States? No. Canada? No.
*duck noise* But thank you for playing.
This is Finland – you know … that country that’s got a perfect education system (clue: it hasn’t, not by a long way); that country with the most perfect health care system in the world (clue: not, again – not by a long way!); that country where social care is the best you’ll get anywhere you go (oh boy – where do I start with the ‘what’s wrong’ list for this country’s social care system?).
What’s my point here?
This is it:
You see that cartoon you have? That cartoon depicts the experience of probably every parent on the planet who has a child on the autism spectrum: the minute you start to request services and the assessments for them, you’re suddenly dragged into a battle with the very people who should be helping you and supporting you. You end up confused: isn’t this what you pay your taxes for? Why, yes it is! Then you should be able to get access to these services for your child, right? Yes, of course! But you get involved in what the Finnish call ‘paperisota’: a paper war. The authorities start firing salvoes of papers at you, in response to which you are required to fire off similar salvoes back at them … lots of information gets thrown back and forth between parties, and absolutely nothing gets done.
In day, many years ago, my then-wife and I were watching a film: a screen-play of Kafka’s ‘The Trial’. Ever seen it? Bit of a heads-up for you: don’t. Not because it’s rubbish (it’s not – it’s actually a very engaging and very disconcerting film). No, don’t watch it because you dono’t need to: you’re living it. The minute you requested those services, you became the accused in a trial that makes no sense, where you have no defence lawyer, and at which you don’t even get to speak in your own defence. Everything in the paperisota I mentioned above is an accusation leveled at you by municipal or state authorities whose (public) remit is to support and help you with your special-needs child (but whose actual remit is to constantly find ways to stall you and to ensure that the public fund – the one you paid into with your taxes – doesn’t have to fund anything useful for your child).
I really wish I could offer you something that says ‘There is hope!’ … but I can’t. There’s no comfort in that old ‘well, we’re all in this together’ crap that most people expect you to find comfort in. To be honest, I’m of the opinion that – in order to get these people to do their jobs properly – your only recourse is to publically (and globally) name and shame them and the departments in which they work. I’m not a fan of all that trial-by-Facebook that seems to happen a lot: there’s often (if not always) no evidence whatsoever to back up the claims being made against people. In our cases, we have that evidence. And – if the local authorities won’t listen to us, and the complaint-remediation systems won’t help us to get what is needed – then maybe we have to lay everything out in public. They rely on us being uncomfortable about doing this, which is all the more reason why we probably must.
I wish you strength as your fight continues.
LikeLike
::hugs:: thank you. ❤️ it’s good to not be alone in this, but FREAKING TERRIBLE that This is also the case in Finland. How is it possible this is a global problem. ::bashes head into wall::.
Oh, here in the US, with the DSM5, they moved away from the terms “high functioning autism/Asperger’s” “moderate autism” and “severe/classic” autism, and now are calling them ASD type 1 (high functioning), 2 (previously moderately functioning, Bd 3 (Classic/severe).
But let’s be real here: the “types” or “high/low” functioning labels are all a myth. My (diagnosed) “high functioning kiddo” has regressed to being so low functioning, he lost a full decade, and now he’s starting to bounce back. Our kids can move all over the spectrum. That’s why I agree: autism is just autism. The labels benefit only insurance companies and NT’s who are trying to put a person in a certain “category.”
::hugs, and well wishes to you!!!!::
LikeLike
Your take on ‘types’ – damn right, a myth. I tried once to explain the concept of state-space (used in phsyics and applied maths a lot) as a way of understanding developmental trajectories to – you’ll love me for this – Simon Baron-Cohen! His team did the diagnostic stuff on my daughter, and a cool paper came out of that.
Sad thing – psychologists generally aren’t as maths-savvy as maybe they really ought to me: he couldn’t think beyond standard deviations, means and normal distributions. State-spaces do away with that. I should do a blog on the topic, maybe.
“Our kids can move all over the spectrum.”
Spectacularly accurate. And this is why the state-space approach urinates so flowingly over the purely statistical approach traditionally used in psychology.
This convo’s getting a bit good now *thumbs-up*
LikeLiked by 1 person
I’ve seen my kiddo, within 12 months, go from *high functioning* to *low functioning* under enough stressors.
Sorry it took me so long to respond. I’ve been really really sick [see pinned post]
LikeLike
Happened to me of late…. too much stress. It crushes us.
LikeLike