Oh, so that’s my job now – My child’s “advocate” ?

advocats

Last week I heard it 3 times.

You are the best advocate for your child.

Am I ?

I wasn’t actually familiar with the expression until I heard it from a teacher last year. The same teacher who had just let Nemo live his first 3 weeks in grade1 rolling on the floor and hiding under tables – without telling me about it!
When I told her that I will now find a solution with the principal, she told me the advocate thing, so encouraging! Obviously seeing no fault in her behaviour  (she had told me she had ‘special needs training’ before – for what it’s worth..)

So over the last year what I found is that people say that a lot to me, and it seems to mean  “Yeah, you’ll actually have to figure this out yourself” .

Now, my closest friends know that I have been a lioness for my son in the past, literally removing him from a hostile pack in my savannah and leaving for very unknown territory. All by my own.
Brave –  because I had to be, to protect him.

But this advocate thing? Not sure.

Of course, I will love him, support him and supply for anything in the limits of our possibilities. But I find it frustrating and complicated to find out what it is that we have access to, what can be supplied and by whom. By law, or privately, locally, or nationwide.

Why is that so damn hard ?

Yes, I have been handed brochures, am reading relevant websites, and am now in touch with professionals in school, a paediatrician, a psy…

Still it seems that all impulses are coming from me, and from me alone. There is no one who sits down with a parent of a child newly diagnosed with autism and says : “First you do this, then you call there, and you also have rights to this, or try this..

It’s all over the place and people are not working together. You miss out and lose time. A lot.
Yes, I do want to be an advocate for my child.
But if I go to court for something serious, I will also not hire my bestie hoping that she will somehow pick up the complete legal system ‘as we go’ and get me through it.

I mean, maybe I am ungrateful. I was heard in school, got the diagnosis quick, some financial aide and have access to therapies. Sometimes, I feel I am very lucky with all that, here in Australia, in my corner of Queensland. It could be way worse.

But what if my English wasn’t so good, or – without being pretentious – I simply wasn’t smart or perseverant enough to deal with administration? What if I wasn’t a reader of blogs, for inspiration and relief, what if I was not able to put my foot down (a little) when necessary ?

Being your child’s advocate is serious business!
If you read this, you are probably in it as well. And all without any special training. Yay us.
 

***

Here is a more composed and equally as truthful post about advocacy for children with dyslexia. Just replace with the special need of your choice or in your life. 

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7 thoughts on “Oh, so that’s my job now – My child’s “advocate” ?

  1. יונתן קסר

    There’s a lot of times that I do wish there were… guides for this kind of thing. Not just a couple of books that are waiting to be discovered at the library, but like a checklist of some sort. This trial-and-error crap (and it’s world-wide, believe me) just annoys the snot out of me when I’m trying to get the right help for my son.

    Best of luck…

    Reply
    1. nikki Post author

      thanks for your comment. i know that every child is different and the possibilities to help are different in every country – every state here in Australia actually – but leaving it up to the parents to find out what is available – who are also different! – is just somewhat helping them incompletely, as our kids miss out even when things are available. ..

      Reply
  2. surfergirl

    It is hard to advocate for your child when you don’t know all the “rules”. Our pediatrician, 2 psychiatrists, occupational therapist, integration therapist and kindergarten agree my aspie needs a classroom aide, but the school and education department see no need, and have politely informed me that they 1. don’t believe the diagnosis, 2. feel I am neurotic 3. believe his aggression that occurs mostly on schooldays but outside of school is due to mother-son relationship issues and couldn’t possibly have anything to do with his overwhelming stress from pre-grade 1 and I must not be stricked enough with him (grrrrrr….) Oh and the autism specialist from the dept. of education told me that he looked me in the eyes so he can’t be autistic…. sorry to ramble on, my point is it is hard to know how best to advocate when you don’t know whether their is need or not because everybody seems to have a differing opinion and agenda. If he doesn’t need extra help terrific, but if he does let’s help him!

    Reply
    1. nikki Post author

      which country / region are you in ? that sounds pretty dodgy that the school and education dept feels they can decide against the diagnosis? it’s in school, not kindy, that all high-functioning forms of autism show their full impact, and the whole ‘eye contact’ thing seems a pretty simplistic marker for the complex spectrum of autism …specialist? i believe he has to update his references.. my son does eye-contact well at times, but me and the teacher agree that his attention is actually more often not channelling on what the person says at that point whereas he can be fully focused on her teaching when he is looking out of the window. i hope you get some extra help, school was when it all ‘came down’ for me and i am thankful that i got some help – and fought for more ! x

      Reply
      1. surfergirl

        We’re in the Black Forest, Germany. He’s in the ,, Frühfördeklasse”, so not kindergarten, more like pre-grade 1. On one hand it thrills me to see him doing so well (because kindergarten was a nightmare), but it is very ,, spielerisch”, lots of playtime, going on nature hikes, art and very little time sitting still doing academic work. Given how angry and easily out of control he gets at home, I have huge worries about his ability to handle grade 1 when he will be required to sit and pay attention.

  3. Pingback: About fairness, ENTITLEMENT AND EQUITY | Suburp

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