Thursday, August 11, 2011

Going into battle

Today I had a meeting with the Principal of the school I want Ashlea to attend next year.

Talk about frustrating.

I thought I was going there to sign off on Ashlea's application forms.  The application wasn't ready for me to sign, rather the school used the opportunity to encourage me to apply to other schools.  They kept stressing that they can't guarantee Ashlea a place at the school - which I understand - I know it isn't the school's decision, it's the all powerful panel's decision.  That would be the panel that has never met or even laid eyes of any of the children it is placing...but I digress.

As you know I am applying for Ashlea to be in the physical support unit at our local school.  If a place can't be found in the unit for her, she will attend the school in mainstream kindergarten. The principal today strongly encouraged me to put some special schools down as an option on the application form, all the while telling me how difficult it would be for everyone if Ashlea were to be in mainstream kindy.

Um, excuse me, I don't care if it is difficult for you to accommodate my child at school.  It is her right to get an education at her local public school.

Of course I didn't say that to them.  I sat there quietly fuming but biting my tongue because I know I still have another 7 years of dealing with the school - I can't burn any bridges yet.  Also I was so frustrated that I knew I would probably end up crying in front of them - and like I said - I have 7 years of negotiations ahead of me - I'm not going to be pigeon-holed as the hysterical parent, because generally I am not the hysterical parent.  It's just that sometimes it seems like the whole disability system is designed to wear us parents down so that we don't have any fight left in us - and then when we give up in despair the system can continue on as it always has done.

They told me to consider going to visit some special schools in the next week and put them on my application.  I don't think they thought my answer of "I don't have the time" was good enough.  But seriously - I work and we are in the middle of preparing for a kidney transplant - I don't have time!  Come to think of it I don't think they liked my blanket "She's not attending special school" statement either.

Sorry for the mega whinge - but I am mega frustrated - so I am going to continue for a little while longer...

I don't want to list any special schools on the application form because I am concerned that it would then be too easy for 'the panel' to place Ashlea in a special school.  A special school is not my first choice for her as I feel that language and socialisation are Ashlea's strong points.  My concern with a special school is that there would be a lot more non-verbal children there and Ashlea wouldn't be as stimulated in that area.  Also, I want all my children to attend the same school - is that too much to ask???  My concern however is that if Ashlea doesn't get a place in the unit, then mainstreaming her at a school that looks at all the difficulties associated with mainstreaming, rather than the benefits means that I will likely have to battle with them on every front - which I seriously don't have the energy for right now.  

I couldn't even get a direct answer from them when I asked if they thought Ashlea wasn't suitable for the school.  I think she is suitable for the school, but if they don't think she is then that gives me a good insight into where they are coming from and what we may be up against.

Now I understand why all my friends with kids who started school this year were tearing their hair out this time last year!  What an unnecessarily difficult process this is.


Molly said...

Of course it would be more difficult for everyone if she goes to the school you want her to, but that's to be expected, aren't they trained to deal with every child's needs or are they only taking the "easy" children? What about the behavioural problematic children etc. She has an absolute right for public education and right to go where her sisters go. That's ridicoulous that you have to deal with this. Are you supposed to drop them all off in different schools or what! You go girl and fight for her (although it's so sad that you have to do this) I'm mad on your behalf. I hope you win and I hope they won't put any more unnecessary obstacles your way

Kim said...

Why didn't you say anything to me at home time! In amongst your frustration and difficult day you still managed to ask me how my appointment went and how I was, and I thank you for that, you are one thoughtful friend! You will have to de-brief me properly tomorrow.

Sarah said...

Oh sounds so familiar!

Sadly even when they get into the school there are massive teething problems!

I really hope Ashlea gets a place at the unit at the Emma's school. I totally understand you not wanting her current social skills and language to be hindered by being at a special school only.

It is good to keep your options open, but you already know this school is great, that is why you want to send Ashlea there aswell.

Did you mention you didn't have time to look for others due to the transplant?


Missy said...'s so annoying, frustrating and unfair that you have to fight so hard to ensure that your child's basic rights, basic needs are met.

I am so disappointed for you Alison and for Ashlea that this is what you are facing and it is only the beginning of the journey.

I really hope that the schools attitude changes. This is Ashlea's RIGHT, regardless..Plus I can totally understand the want, the need for all girls to attend the SAME school.

This really highlights how very lucky we have been in school for our little girl. We have been welcomed with open arms. While MM's needs are very different to Ashlea's, we have been blessed with having such supportive and wonderful school who actually WANTS MM to attend.

I will be thinking of you all and I really hope this can be solved. You dont need to add school issues to your very busy year ahead.

hugs xxx

Susan, Mum to Molly said...

Hmmmm... Better not mention that some of us are still tearing our hair out.

Seriously though - do not let them bully you into putting a special school on your application, unless it is an option you would really like to consider/explore.

Was it just you and the Principal at the meeting? I'm guessing you didn't know it was going to be "an ambush" (they're good at that)...

Think about taking someone with you in future - e.g. I'd be happy to come, if that would be helpful.

Have you made contact with your local Disability Programs Consultant? They might also be useful to you...

Sorry, these are just some quick thoughts (its been a long week).... Definitely stick to your guns - you now what's best for your girls, and don't let anyone try and tell you otherwise!

Sorry that I'm not surprised this is the attitude of the school...

Hugs, S xx

Becca said...

Alison, I want to lend you all my strength in supporting your decision not to allow Ashlea to be segregated.

You've identified some very good reasons why an inclusive setting would be best for your girl, but I'll add a couple if I may. I was mainstreamed all the way through, my oldest and dearest friend was in segregated education until she was 10 and had to take the Education Authority to the High Court before they'd let her go to her local mainstream primary, and then secondary schools. They claimed she wasn't academically able to benefit from mainstream school - she'll be graduating with her Master's Degree from one of the best universities in the UK a bit later this year.

One: educational standards in special schools STINK. The attainment of any given child is far, far lower than it would be if they were mainstreamed - this is true across the board, regardless of severity of intellectual impairment or additional support needs. Occasionally, for some families, this is an acceptable compromise for some other reason. But it's there and don't ever let anybody pretend it's not. Even for kids who only have physical impairments and no intellectual impairment at all, special schools do not provide a good standard of education. (There are, of course, rare exceptions to this. Really, really rare exceptions. For example I believe there are literally two or three special schools in the entire UK where the educational attainment of their kids is comparable to mainstream education).

The other, and the kicker, is that being segregated is an utter disaster socially and psychologically. I have never, ever met an adult disabled person who attended a segregated special school who was not deeply scarred by it. And after more than 15 years in the disabled people's movement, I've met a few. Maybe three hundred or so, from all over the world. It's universal. Special school screws you up. You might get GREAT therapy and sure you'll be nicely cocooned from all those nasty normal non-disabled kids but strangely enough, disabled children can also be bullies so you'll still be bullied... only you'll be out of sight of the rest of the world, bussed out of your community, your friends won't live within easy wheeling distance, your parents won't get to know each other readily, your mum won't ever get to chat to others at the school gate. You'll spend your entire childhood being defined by your impairments and you'll develop a powerful sense of self-loathing because why else would you be shut away out of sight of the rest of the world like this? You'll see far too many of your friends die, especially if you're in an area which routinely segregates kids with muscular dystrophy. When you're little, you might not actually realise that you'll grow up and be a disabled grownup, because all you'll see at school is that the disabled ones are the children, and the adults, the ones with all the power, are non-disabled. Your vocabulary and social behaviour will be further from age-appropriate, potentially the biggest problem you'll face as an adult if you're stuck in the special school system all the way through. You're quite likely to come out LESS independant, despite all that therapy - you won't be surrounded by kids to copy who can model functional behaviours for you all day, every day.

With much love and strength
(check out the Alliance for Inclusive Education, by the way!)

gina @ Inky Ed! said...

Hey Alison
I am happy to chat at any time if you need to.

Just be careful about the 'right' to an education line. Actually, no-one in Australia has this right. We do not have a rights based constitution. We have an obligation as parents to send our children to school, but they certainly don't have a 'right' to be there. That being said a school can't refuse to enroll your child at their zoned local school in the mainstream class unless they can prove significant hardship (most Principals don't even know they can do this) but the alternative can only be and equivalent school equidistant from home so they can't refuse and then say you should go to a special school. I would be more inclined to enroll her in mainstream class with your second choice being the physical disability support unit and figure they would very quickly find her a place since it will be "so hard" (give me strength) for her to be in the mainstream class. If there is any Family Advocacy/Resourcing Families education events coming up be sure to go - so much information in such a sensible format. But again, happy to chat any time. You can even get onto the Resourcing Families site I think an seek help from a Mentor (they will find you one) who can help you through these options - usually parents that have been through it all before.

Alison said...

Thanks for all your words of wisdom lovely friends - I knew I could count on your support.

Maree said...

I love my daughter's special school and would never consider mainstreaming her, but I understand not everyone agrees with that.
Becca above paints a terrible picture, but they are not at all like that in my experience.
Rather than a debate about mainstream vs special schools, I would not want my child in a school where they weren't wanted. I think she would pick up on those feelings and that would harm her self esteem and education more than attending a special school that was welcoming and caring.

(BTW, just offering my opinion - I have no idea on Ashlea's needs and what is suitable for her and am not judging your decisions).

Becca said...

I'm sorry that you feel that segregated education is the only option for your daughter, Maree. What I tried (and maybe failed?) to make clear is that for SOME families, these huge downsides to segregated education are balanced by other factors - and yes, being in a school that really doesn't want you is one hell of a downside - but that doesn't make all the factors I mention actually go away.

Do bear in mind that I'm now at the other end of this process - my friends and colleagues are young adults (as am I) aged between 19 and 30 in general. I'm not talking to or for mums and dads or segregated education teachers - I'm just sharing the experience of a huge and vastly diverse number of disabled adults who have survived the segregated education system, including people with severe or profound intellectual impairments, and multiple complex needs.

Yes, special schools care ever so much - or at least the ones that don't lock a screaming child in the toilets for an hour or leave kids sitting in their own waste because it's 'more convenient' to change nappies/pads at the end of a lesson do - but unfortunately the things I mentioned remain.

It's a deeply personal choice as to whether all the negatives of segregated education are balanced by a child's individual circumstances - and I do recognise that it's perfectly possible for a situation to be such that segregated education is the less-bad option - but please, don't pretend they're not there at all.

ferfischer said...

Wow Alison - Good luck with that. We're just starting the preschool process, and Cici's needs are really different than A's - but I think you are on the right track. Go with your gut and be honest and nice, and firm, explaining your thoughts just like you did here. Maybe even humor them a little bit, by visiting some schools. You know what will feel right to you, and go with that. Be prepared for a marathon, these types of things take endurance and persistence! Good luck!