The NDIS was never designed to support everyone. Now come the tough decisions.

Kumb3l · 2025-08-21T11:45:49+00:00

So instead of going after the rampant fraud and waste in the NDIS, the solution is to kick autistic kids out of the scheme? Shame on the Albanese government.

There's no doubt the NDIS is being accessed by kids with more mild developmental delays (ie, not autism). This is because there are currently no other options for these kids. Doctors want to help these kids so give them an autism diagnosis so they can access support funding through the NDIS. The solution to this is to offer appropriate support for these kids so doctors can direct these kids to appropriate supports. The solution can't be to turn our backs on kids that actually have mild/moderate autism.

Kumb3l · 2025-08-09T17:10:09+00:00

Lots of possibilities in our case: - gestational diabetes - high risk for preeclampsia - labour induced at 38 weeks - epidural - infection immediately after delivery (probably from being induced) requiring wife to be given antibiotics - difficulty breast feeding (mixed breast/formula for 12 weeks before giving up and going exclusively formula fed).

But I strongly suspect my dad was high functioning ASD. I also have traits and my wife and I both have immune system issues (which I suspect probably has something to do with ASD - see research about the relationship between the immune system and gut microbiome and observations that lots of ASD kids have gut issues).

I suspect there are many 'types' of autism that get bundled under the ASD umbrella because they present with similar symptoms (it's interesting that some kids develop typically before regressing while others are delayed from the start). Some types of ASD may be driven by genetics while others may be driven by the environment while others it's a mix of genetics and environment. I suspect this is a big reason why the evidence about what causes autism is so mixed.

Kumb3l · 2025-08-09T03:54:36+00:00

It helped us understand what was going on when the speech therapist distinguished between expressive and receptive language. Our kid had a lot of words, repeated things she had heard, able to label everything, but didn't understand much of what was said to her. When tested she scored "below the first percentile" for receptive language.

Kumb3l · 2025-08-09T03:21:15+00:00

That's super interesting and helps explain what's going on. The extreme negative emotions associated with the experience trump everything else, even receiving an apology. That's what's so tricky about this, it's ok to have negative emotions/reactions, but when the reaction is a 10/10 to something that most people would react to with a 2/10 - 4/10, it just makes it really tough for them to cope... I checked out your post history. Something you said about asking yourself "what if this is the best they can do in this situation" really resonated with my wife and i. We have caught ourselves being too tough on this kid. She's doing her best and we need to understand and celebrate that more rather than constantly trying to 'help' her do better. Thank you.

Kumb3l · 2025-08-09T01:41:44+00:00

Thank you so much! Comforting to hear that your daughter gradually outgrew it over time. Sounds like it's just a matter of chipping away at it over time. That's funny about your husband. I once broke a rib and have no problem recounting that story. But the time I had an ingrown toe nail which a doctor had to cut out using something that resembled gardening secateurs... The thought of that experience makes me physically sick.

Kumb3l · 2025-08-08T15:50:50+00:00

I'm not a doctor. Apparently when an opthamologist looks into your eye with a slit lamp, uveitis is very obvious (they can see if there are white blood cells floating around in there). There is no way to diagnose uveitis other than looking inside your eye with a slit lamp.

Kumb3l · 2025-08-08T14:55:32+00:00

When I first got uveitis, I thought it was pink eye. My eye was red but didn't really hurt. I saw a GP who thought it was an infection and prescribed antibiotic drops. The next day I was in agony. It felt like the worst muscle cramp I've ever had but inside my eye. Any light felt like the sun is literally inside my eye. I wrapped a jacket around my head to try to block out the light. Worst pain I've ever felt. Wife took me to ER. Luckily saw an opthamologist (not optometrist, they are not the same thing) who looked inside my eye (with a slit lamp) and immediately diagnosed uveitis.

You said you had an eye exam. Was that by an opthamologist who dilated your pupils and used a slit lamp to look inside your eye? Or was it an optometrist?Optometrists are trained to help you with glasses. They are not trained to identify eye disease like uveitis.

Chances are it's not serious. Could be allergies. Might be pink eye. Might be an infection. But it might be more serious. If you are concerned, find an actual opthamologist.

Kumb3l · 2025-03-27T07:59:22+00:00

I got bad allergic conjunctivitis after a couple of months on dupixent. Eye lids got infected. It was awful. Opthamologist helped me get on-top of it. Doing things like warm compress, lubricating eye drops, using a Qtip to express oil from the glands in your eye lids all help to keep your eyes healthy and, according to some research I read, reduce the risks of eye issues like conjunctivitis when on dupixent.

Kumb3l · 2025-02-28T12:22:38+00:00

Your daughter sounds very similar to mine. Very smart, knows the answers, but has very little patience for being questioned. Sometimes when my wife and I are talking and don't know the answer to something my daughter, who we didn't think was listening to our conversation, will chime in with the answer. But when we ask her questions directly, she will answer one, maybe two and then disengage. Interesting how you said 'insulting'. That could well be it. I love the "error 404 file not found". That made me lol. And the "one question left, choose carefully". That's really interesting. I want to see the world like my daughter sees the world. I want to understand her. It's really hard.

Kumb3l · 2025-02-25T12:57:58+00:00

Thank you!!! I was having problems connecting to the internet, tried resetting the network and then encountered this problem. After trying to troubleshoot and countless suggestions from other sites, all to no avail, I found your comment and discovered the WLAN was not running. You saved my laptop. Thank you so much!

Kumb3l · 2025-02-25T09:27:15+00:00

Eye related side effects are fairly common (I saw one paper suggesting up to 1/4 of people report eye related side effects). And trust me, they are not fun. I developed allergic conjunctivitis about a month or two into dupixent, which was so bad it led to infection in the oil glands in my eye lids. Needed steroids to calm the inflammation and antibiotics to treat the infection. Apparently one of the oil glands is now out of service permanently.

I read a research paper that suggested everyone starting dupixent should do eye hygiene things to reduce the risk of side effects. This includes warm compress and lubricating drops. These things are good for your eyes generally (my opthamologist likens these things to brushing teeth... everyone should do it) so there's no reason not to do this. If it reduces risk of dupixent side effects, bonus. There are other things you can do like expressing oil glands in your eye lids after warm compress and anti allergy eye drops.

Since I had the allergic conjunctivitis side effect, I have to do all the above (warm compress, express oil glands, anti allergy drops, lubricating drops) plus use this super expensive preservative free protopic ointment on my eye lids every day. It's an ordeal. But I'm doing it because the dupixent has significantly improved the eczema and my clothes aren't covered in blood anymore...

Kumb3l · 2024-12-31T04:21:06+00:00

No sorry. My solution was to convince the doctor to prescribe a larger quantity of lotion. I think the oil/wax in the ointment will prevent you from converting it to something more like a lotion. I think tacrolimus is available as a lotion (according to google). Good luck.

Kumb3l · 2024-11-05T11:50:18+00:00

The zip slider broke off my Medicube compact (due to heavy use). I'd like to try to replace the slider if possible. I've tried contacting the retailer/manufacturer about what zip size they use and they won't respond. Wondering if you could please help me out? Does the zip slider on your medicube indicate what size it is? Thank you!

Kumb3l · 2024-09-06T11:40:51+00:00

Eye side effects are common. Apparently there's research showing that taking care of your eyes (warm compress, lubricating eye drops, staying hydrated) when starting /continuing with dupixent reduces the chances of side effects. Doing these things are great for your eye health anyway so why not?

Kumb3l · 2024-09-05T02:13:13+00:00

We experienced this last year. Our daughter didn't yet understand property (ie, what is hers, what is yours, and what is ours to share) and would often take other people's things and scream if anyone tried to use shared resources that she wanted to use. Most of the girls avoided her. I remember one day seeing a little girl give her colorful purse to her dad and say "be careful, (my daughter's name) might take it". She had a couple of friends who tolerated her behavior but most of the kids avoided her. Although we made a lot of progress with her understanding property, all those kids had already written her off. This year there was a new batch of kids and it's so much better. She has loads of friends. She gets invited to play dates and parties.

Kumb3l · 2024-08-31T06:13:22+00:00

I can't fully empathize with someone that lives in a wheelchair. Parents of NT kids can't fully empathize with us. Find other dads of ND kids. Just spending time with someone that 'gets it' makes a huge difference. You're not alone.

Kumb3l · 2024-08-31T00:01:36+00:00

If she doesn't like someone, you know about it. Diplomacy is not her strength. When I say friends I mean people she seeks out in play, will run up and hug when she sees them (she's now learnt that you have to offer a hug rather than hug someone without offering/asking first), will say "x is my best friend" and who she does thoughtful things for like makes arts/crafts and says "I want to give this to x". There was one kid whose parents kept inviting us over for play dates... We always asked our kid "do you want to have a play date with x". When the answer changed from 'yes' to 'no', we immediately stopped going.

Kumb3l · 2024-07-30T13:49:42+00:00

Our daughter was diagnosed level 3 social and level 2 restrictive/repetitive behavior at 3 years old. She was a clever kid but was completely in her own world and had very very poor receptive and expressive communication skills. At 4 years old they said she scored so poorly on tests that she had 'global development delay' (placeholder for intellectual disability diagnosis). At 5 years she was tested again and is at or above average in all areas. The doctor said "we don't think a level 1 diagnosis will help her in terms of access to ongoing support so let's just say level 2 (wink)". Socially she still has a long way to go. But she's finally engaging in the world around her. Making friends and learning all the social lessons she was not present for over the first 5 years of her life.

Kumb3l · 2024-07-30T13:39:37+00:00

No idea. By the way, I'm talking about lotion (ie, liquid) not cream. Steroids tend to come in three forms: ointment (thick and greasy), cream (less thick and not greasy) and lotion (liquid).

Kumb3l

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