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  1. #1
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    Default Angry.

    My 3 year old was diagnosed with ASD a few months back. He'd stopped speaking at 18 months. Every other milestone was reached so we thought it was a speech issue. Told to wait for ST until he was 2 and a half. Noted sensory hyper stimulation at 2. Suspected SPD. GP concurred and felt an assessment was necessary.

    Our GP referred us to a pediatrician, he was assessed by a speech therapist and the paediatrician (the latter actually sat at the table and spoke to me during the assessment) for about 40 minutes and the verdict was delivered - ASD with global developmental delay.

    My first response wasn't devastation but confusion. I'd had my money on Sensory Processing Disorder (SPD). I asked her if she was sure.

    "Well, we're never sure because the spectrum is so diverse but I am putting ASD as your child's primary diagnosis," was her response.

    I went to a teacher friend who had Special Ed experience. She deciphered the report and I learned that the secondary diagnosis was the delay. They'd put him two years behind.

    I immediately disagreed with this. So did teacher friend.

    Thankfully, so did my GP.

    But hey, you get funding, I was told. So I went and got it. To be honest, it came in fast. I then started the long road to organising resources. Dofferent story....laborious, long waits...Finally found OT and ST. Put him in child care. Took to that like a duck to water.

    Then the comments started. He doesn't look autistic. He's just eccentric. It's easy to play the system for more funding isn't it. Why can't he speak? Well he's autistic so he'll need one on one care. Because of his disorder we'll need to see if we can get extra funding before we accept your enrollment. Gee, he's so affectionate and bright..I didn't think he was autistic (that comment illustrates stereotypes in action, not my refusal to accept).

    People can be so cruel. So empty headed. So limited in their thinking.
    I didn't cry when he was diagnosed. I got angry. It was blood I wanted to shed, not tears.

    I queried the veracity of the report. Shut up and just take the funding, I was told. You need to accept this, said another. Why? Why MUST I accept this when what I read in the report doesn't match what I'm seeing on the ground? Shhhh, you're fully funded, peeps would kill for that.

    Really? Are we that kind of a society?

    I saw the thread Not Coping With Diagnosis and I thought, true, not coping with mine either but in a different way. I am royally ****ed off. With the diagnosis and an industry that capitalises on it.

    So this is my version of not coping very well. I'm the Clayton's Got It So Together Woman*. The woman you are when you're not really that woman at all.


    (*to those who don't know Clayton's, because I'm old and you're not, Google the iconic ad)

  2. #2
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    Oblena is offline I've done it in public and I'll do it again - I don't care who sees!
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    Are they even allowed to bang on about not accepting enrolments if they don't get funding?

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    Sounds like a difficult journey. Hugs. Everyone is different in the special needs world. .. But one thing I'm learning and that I think we all have in common is to develop a thick skin and ignore the dumbass comments. But it's hard.
    Hugs.

    Sent from my GT-I9505 using The Bub Hub mobile app

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    Mrs Tickle  (16-10-2014)

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    It is a really difficult path to tread when your child has special needs. There are a lot of emotions that can be experiences, and anger is one of them - you have every right to feel those emotions and I completely understand. Just my perspective -
    If you don't agree with the diagnosis, could you see another paediatrician for a second opinion? He is right in that ASD is a spectrum, and often children will display some traits and not others. Also, not to question your feelings, but out of the people you mentioned (yourself, GP, teacher, and paed) - the paed is the only person mentioned who is qualified and able to make a diagnosis - just mentioning it because as a teacher, I often feel a child may have a particular special need, but I always acknowledge to the parent that I am not qualified or able to make a diagnosis - it is my job to work with a child to help educate them in every way, not to diagnose.
    Also, I understand your frustration at the child care not accepting his enrolment - BUT it's good for them to acknowledge that they are not able and equipped to provide him with the care that he needs until the funding is through. They need to ensure that they are caring for him properly and catering for his needs appropriately.
    Also, regarding funding.... I totally get the frustration. It is really difficult to feel like youre a slave to the 'funding' and the diagnosis. Unfortunately, it's how the system works. Without funding, your DS can't get any extra help. The funding is there 100% to support and help him, and to help him reach his fullest potential in life. As a teacher, I would fight tooth and nail for a child to receive extra funding - because that money helps them to have 1:1 support, or an aide, or extra resources, or whatever is required to help the child the best I can.

    I am so sorry you've had to deal with negative attitudes and limited thinking. I really hope you are able to access some services in the future that are more understanding and accepting of his needs xx

    ETA: I really hope this doesn't come across as dismissive of your feelings. I think that coming to terms with a child's special needs can sometimes be like a 'grief' process, and anger is a very valid emotion to feel - I hope it doesn't come across like I'm trying to explain away the reason to feel angry! I am just putting it out there as my perspective as a teacher, please ignore if it isn't helpful xx
    Last edited by cheeeeesecake; 15-10-2014 at 20:20.

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    Mrs Tickle  (16-10-2014)

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    hugs xx

    in my experience, those who say 'but he/she looks normal' just needed to be educated more about disorders etc
    don't take it to heart, it's exhausting enough lol

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    Mrs Tickle  (16-10-2014)

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    A psychologist, speech therapist and occupational therapist are also qualified to make a diagnosis. It's how a lot of formal assessments are run but there must be at least two in the room at the same time.

    I'm not challenging it. If a label means I get funding then they can have their label.

    I'm just really furious with the director of the preschool here in the poky, touristy, wine boutique arty farty backwater I presently live in.

    My son was offered a place in pre-entry at the local pre-school. A half day a week. He was entitled to more but she felt this was a more tenable period. So we attended and he slipped in easily. So I sat through sessions until term ended.

    This meant parent free attendance two days a week in the new term. But she wasn't satisfied that he was independent. Whatever the fk that means. I did ask but kept dancing around her definition.

    I said that I was no longer in a position to sit as I was now a single parent with two other children, one toddler, one baby. I had also done well above what had been required and it was clear he had settled in.

    She asked why I couldn't get childcare to which I replied that all of the surrounding centres were fully booked. Better yet, why was she offering places she couldn't cater for?

    Then I got the funding spiel. Which, if I'm honest, she used to suit her. What she wanted was a toilet trained, self feeding, normal boy she didn't have to worry about. But she couldn't say that as she'd be breaking the law.

    The bottom line was: no staff to cater for him despite the many promises given at the start of last term so he couldn't attend.

    "This is best for everybody..." she said. Fact is, it's best for her. I doubt she has experience with children with disabilities, that she had her hand out for money and didn't get it. So now the Dept of Ed gets to deal with it. This, in addition to a food issue at child care, the standard of which in my area is woeful, just makes me want to move to another State.

    I can handle autism. I will not handle dead****, ignorant adults who actively exclude children because it's all too hard for them.

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    zooey  (16-10-2014)


 

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