9.06.2013

It is not ok

I hardly ever complain about the system. I try to give everyone the benefit of the doubt. Everyone is just "doing their job". We are not any more important than anyone else, we will wait. It's ok.

But, after a year of waiting and being put on the back burner I am here to say no, it is not ok. Not ok at all.

It is not ok that Sophie was diagnosed with autism last August and had to wait over a year for services.

It is not ok that after waiting seven months for financial assistance for children with severe disabilities, assistance "everyone is entitled to", I received a phone call while driving and was told if I won't call her back the very next morning she "will close my file".

It is not ok that she had to wait nine months for an MRI.

It is not ok that when the said MRI disclosed completely unexpected results, her own paediatrician nearly silently handed us the report and left the room without explaining anything.

It is not ok that when I came home and googled and found how serious the condition is and called his office and asked to speak to him was told he will call me back. It's not ok he never did.

It's not ok that the follow up with the neurologist was scheduled for January.

It's not ok that I called and left messages to bump the appointment closer with 3 different secretaries and nobody called me back yet.

It's not ok that her referral to the geneticist is over a year old. It is not ok that when their office finally called me yesterday (from an unlisted number) and I missed it, they grumbled and pouted whether I even wanted the appointment at all.

It's not ok that I applied for the subsidy for her preschool last October. It's not ok that I had to call every month to check on the status of my application and was being told to call back in a month. It's really not ok that when I called today it was suggested that maybe I should write a "nice little note" about how my daughter has special needs even though it is clearly outlined on the form.

Upon receiving a diagnosis we are told there are "so many services available" but really there are not. What there are instead are walls. Walls in the shape of voice mail boxes which are never answered, walls in the shape of forms you spend hours filling out and which apparently get lost in the void, walls in the detached voice on the other side of the phone which in a polite way is really saying "you are not important. You are nothing more than a nuisance. You can try calling back but it won't help anything. But when your number does come up you better drop everything and run, because there are no second chances".

I want to focus on the positive. I don't want to be petty or entitled. Yes I know there are many people waiting for services, being swept under the rug. But I think everyone can agree with me that it is not ok.

 

9 comments:

  1. Yes, I agree with you 100%. It really is NOT okay. :(

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  2. It's so much not okay it was making me cry to read this. The very, very hardest part of the whole special needs parenting bit for me is working against this kind of not okay stuff, having to "get tough". I don't want to have to get tough. I don't want to have to beg or threaten for services that should be given automatically to those who need them. I don't want to have to know the right people, or the right magic words to say, to get what Janey needs. I think you are a lot like me---not a fighter. And I do everything I can to avoid having to "push" people, to work the system, but I've slowly, slowly, slowly realized that sometimes I have to, and I hate it. I was wondering---in the US, at age 3, the public schools are the ones that provide education for kids with special needs. Sometimes that can take the form of them paying for private schools. Is it like that in Canada? If so, if it's also like the US, there are all kinds of IEP laws about timeframes on how quickly things are required to be done after certain types of contacts, etc, and it would seem like none of your are being met! I hope it all gets better SOON.

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  3. I could go on and on with a similar list... and it's really not ok. Sadly we (the ones raising already challenging children) also have the job of trying to teach the system how to handle us properly. Like we have time for that. hugs.

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  4. Its absolutely not okay
    Many hugs
    Amazing how hard we have to fight for everything

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  5. It is not ok
    Hugs to you and your family
    I hope the walls tumble down for you

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  6. Thank you for all your kind words everyone, it all means a lot. The attention this post got here and on Facebook makes me think that perhaps many people feel the way they are treated is not ok, which is so sad. I think finding out your child has any special needs is a confusing and anxiety-filled time, adding beaurocratic stress on top of that is definitely not a kind thing to do. I guess what doesn't kill us makes us stronger, eh.
    Suzanne, here there is no province-ran "early intervention" they tell you there is, but there isn't. Oh there's an odd hour of speech or occupational therapy, some ABA if they think your kid is "ready for it" (really). School starts at 4 and I guess we will see what wonderful opportunities await us there. I'm not holding my breath.

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  8. Oops, accidentally deleted previous comment :) Shows you where my head is this morning (not attached firmly enough). Was just saying how NOT ok all this stuff is, and how much I feel you. I hope you get a break with somebody somewhere (or ideally multiple somebodies, multiple places) soon.

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    Replies
    1. Thanks. Some things got off the ground (we saw the geneticist today), some things are moving along at glacier speed (subsidies, bleh). Patience and steely resolve is the name of the game I see.

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