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What people do if can’t get funding but child needs serious help?!

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  • What people do if can’t get funding but child needs serious help?!

    Hi, my son has 1 more appointment left for his Autism assessment. Yesterday was a 3 hour appointment with the Paediatrician and Psychologist. They said he has lots of Autism traits but they are not sure if it will be enough to diagnose him with Autism. Now, I don’t understand this. He is quite clearly not a ‘normal’ child, which they said in different terms. I know a few people who have kids on the spectrum and they don’t have half the trouble I have with my son day to day. Why do I not hear the boy next door to us who is on the spectrum screaming and melting down?! I’m sorry I am just so sick of this! My son seems to never meet the criteria but I simply need help, as I don’t know how to parent him well anymore. They want him to have speech and psychology but how the hell do they think I will afford this as a single parent?! What do people do if they can’t afford the care for their kids and can’t get funding?? Am I supposed to just let my son possibly become worse because I’ve done what I can parenting wise and he’s had OT. The Drs said yesterday it may be due to his neurosurgery he had because he hasn’t been the same since. Surely I can get some help because of this. It’s a medical condition that he will problems from for life. I have applied to NDIS and they have denied. Arghh just so frustrated. Feel so alone in this at the moment, as my friends have children with no problems. You have all been amazing on here in my past posts, thank you.

  • #2
    Firstly, massive hugs

    I have a son with ASD & ADHD, but unlike yourself, we have received loads of support through the NDIS.

    It seems incredibly unfair that you don't qualify for any additional assistance.

    I would see what the outcome of the ASD assessment is - hopefully the report will highlight some of his issues and struggles, which may provide you with enough to appeal the NDIS's decision not to grant funding.

    Keep fighting, it's the only way unfortunately

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    • #3
      I can offer information relevant to the Victorian Education system, but you would need to follow up on what applies in your state. You can get Aide funding for a child on the basis of "severe behaviour" and from there it is up to the school how they utilise that aide - e.g. it could be any thing from in class support with their work and taking them for a walk when they need a break, through to doing their OT exercises or speech therapy practise with them. It's not easy funding to get and needs the person filling in the forms to really know how to word things to tick the right boxes for the department to sign off on it.

      Even without this, do talk to the school lots. As financial hardship is an issue and they can see that you are doing what you can in terms of trying to get a diagnosis, they will want to pull every string they can to help get your child support.

      I can understand the Paed's hesitation to diagnose ASD if they are thinking the surgery is the cause. These sorts of dianoses are always very, "unless it can be attributed to another cause". Do you know if they would consider an Acquired Brain Injury diagnosis? Or is this not possible if the neurologist says the scans don't show anything?

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      • #4
        Thank you. I wondered if I could appeal the decision of funding. Hugs to you too. It’s hard to care for a child with additional needs. I’m glad you’ve had lots of support though. We’ve had good support medically but the neurosurgeon isn’t interested in talking about his behaviours and whether his arachnoid cyst has caused my son’s problems. I don’t think they really know the behaviour changes, as their focus is medical/surgical and every patient is different in how they react. He probably has got some sort of brain injury because they gave him a subdural haematoma during his first surgery. I don’t think the neurosurgeon would agree though but you might be right. Thanks for your responses.

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        • #5
          Just because a child fits some autism traits doesn't mean they have autism. I honestly thought my daughter had autism. She went through assessment and didn't tick enough boxes.

          How we get through is our gp referred us to a public paed. Which is at the children's hospital. She ran a bunch of tests because so many things can mimic autism traits. She then refers us to specialists through the public system.

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          • #6
            Op, is there any avenue for pursuing In terms of an ABI (acquired brain injury) and/or neuro-cognitive disorder(s) diagnosis?

            It’s certainly worth speaking with the specialist/Doctors etc who treated your son.

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            • #7
              Ok thanks. Hopefully the Paediatrician and Psychologist who are assessing him for autism will be able to write a report to get funding even if he isn’t diagnosed with autism. I really need help with him. He’s been so strange lately, as if he’s not all there. He did a little wee on the couch today when he ran inside nudie (they were playing in the sprinkler outside). He won’t wipe his own bottom and tonight as I was cleaning his bottom he’s doing little bits of wee were coming out onto the floor. He’s been saying to me angrily ‘what did you say to me’ when I just said something simple like I’m getting a Emily her bottle. He’s been following me around most of the day whining, rolling around on me. I’ve done so much with him over the weekend but it’s never enough. Maybe he has Schizophrenia or Bipolar. I know this is dramatic but he acts so paranoid and has been saying random things. I might need to get another MRI of his head just to make sure. When his shunt blocked as a nearly 2 year old his symptoms were vomiting and drowsiness but he’s older now. He only saw his neurosurgeon on Monday though and he was happy with his head measurements and eye sight. Who knows anymore! Thanks to everyone who responded.

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              • #8
                You know him best and if there is a change in bus behaviour you should 100% follow it up. That's why they brought in Ryan's Rule, in respect of the fact that parents often know best that there is something "wrong" with their child.

                The 'not being there' could be absent seizures and definitely worth looking into further. Ditto if there is new incontinence, which could indicate nerve signal interference.

                The over-reactions sounds a lot like ADHD's emotional dysregulation. However, with the other changes to his behaviour, I'd definitely be pushing for another MRI. DS has ADHD and the signs were there from very early on, it's not something he developed once he got to school age. I really hope you get some answers soon.

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                • #9
                  Thank you. He’s at his Dad’s for the next 2 nights so I’ll find out how he was when I say good night to him. He was good last night but as soon as we got to his Dads he threw the TV remote, scrunched his sister’s stickers up and threw something else. I took him to school so hopefully he had a good day. Work sent me home today and made me speak to our free work counselling. The counsellor was great and actually teaches behavioural techniques for kids with disabilities and mental health issues. A lot of it I have already tried but I’ll try some other things she mentioned. I just know that it’s more serious than just making things fun for him now though. I’m still considering an MRI. I’m sick of putting things down to a phase that never ends!

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                  • #10
                    Can I ask how old he is?

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