Here are some suggested organisations that offer expert advice on SN.
Autism and cancer(7 Posts)
I'm really curious if anyone has or knows of other parents who have had ASC children that have other medical conditions requiring intrusive treatment.
My DD is 13, she has Asperger's, she has leukaemia (which she has dealt with so well in spite of a huge fear of needles) and now they think she could have haemochromatosis which will require life-long bloodletting. This may or may not explain the arthritis on her joints. If it doesn't, something else completely is causing that.
When confronted with needles she regresses and has huge meltdowns. I am also sick of doctors who ask her questions rather than me. She just tells them 'I'm fine' as she's too distracted by what's happening around her to consider what to say. I'm always having to push. I am exhausted with the whole thing and I cannot believe they think there's even more things wrong.
This year has been hideous.
Once they KNOW that's what the patient wants (and perhaps you aren't being a pushy Mum for the sake of it) they should be much happier with this approach. My sister has a totally different disability that also affects her communication skills under stress. When her appendix burst as a teen she wrote it in red and popped a sign at the bottom of her bed "talk to my Mum cos I find it hard to follow and she'll explain it to me!" This was followed by her signature. The nurses etc laughed but they did do as she asked, and it really helped.
Cereba do these free wonderful "passports" that show medics, carers and school staff what a person's needs are. I can't help thinking that getting them to help you produce one would save you so much time in constant explaining etc and perhaps reduce some of your stress a little. Do contact them.
We have two girls with Autism and DH we are pretty sure falls on the Autistic spectrum. Dh has cancer, leukaemia in fact. I always go to his follow ups, as he is terrible at just saying "im fine" and forgetting to ask the doctor the questions he wanted, even if written down. He also forgets what they say and gets confused by the tests and appointment and treatments.
I would be tempted to ask if its ok to do a passport, you can make one yourself for her. It just lists her dx, and the things she struggles with.
Hope your both holding up ok
Thanks to both of you. I will look into a passport for her as they do seem very clueless about how to deal with her. She was an inpatient for a few days recently and I went home for a break whilst her grandparents stayed with her. The doctor discharged her because she told everyone felt fine, and when they brought her back to me she was in a right state and straight back in again. I was very cross!
A bit of a different story here as one of my sons isn't officially diagnosed with Autism but everyone agrees he has it - in fact his Paed has just re-referred us back to the Autism team. His official autism assessment was postponed 2 years ago because he got leukaemia. He will be 7 in December. He also has other problems (GDD, eyesight problems).
I found the Passport, although a good idea in principal (principle?) turned out to be no use to me at all. I would take it along every time we had to go to the hospital for an admission but it was more or less tossed to one side and I had to fill out forms with different nurses, saw a different doctor each time. Absolutely no continuity of care when he was in hospital.
The doctors would ask him how he was and his standard response is "I don't know" and he shuts his eyes. I do let the doctors speak to him first but it soon becomes obvious that they won't get any sense out of him. He's verbal but repetitive.
Going to the hospital clinic for on-going treatment for the leukaemia is different though. There is more continuity of care. They know my son has other problems. That he has to be held down to get the chemo in; that he will freak out sometimes if spoken to; that he will refuse to get weighed and have to be physically carried there and that basically he will scream the place down or be nice-as-pie given whatever mood he's in.
It is exhausting. I wish I could offer you more support other than to say, I know how you feel.
Thank you for replying. It is exhausting; not many people understand. It sounds like you are a long way into treatment, which is great. I hope you manage to get him back on the path for DX soon. Best wishes .
I would be tempted to but a sign on her bed, saying "I may be 13 but i also have autism so please talk to my mum so she can speak for me as I find questions hard"
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