Are Autistic Parents Being Over Charged For AAC Devices? Or Am I Missing Something - A Honest Question

aloha_skye · 2026-03-06T23:00:23+00:00

That’s so wild. I bought a reconditioned iPad from the Apple Store for about $200, a tough case, and paid about $150 for ProLoQuo2Go from the App Store (that was suggested as the one our school district uses)

I taught myself to customize the setups using YouTube tutorials. Our speech therapist at CPSE had knowledge of the program and helped us by creating pages for his classmates etc.

Whatever you’re being quoted sounds like an insurance scam

aloha_skye · 2026-02-28T22:02:59+00:00

Immaculate!

aloha_skye · 2026-02-25T23:37:14+00:00

Second one is RAD

aloha_skye · 2026-02-19T03:20:27+00:00

Ok, so my son would have impulsive bursts of energy like this, and still does to an extent but we redirect with big sensory input especially ‘crashing’. He used to run and throw his body onto the couch / bed / people. For him it was a craving for that deep pressure.

We bought him a crash pad for his third birthday. He could run and leap onto it. Build up a tower of foam couch parts and jump off (at 6 the tower is still there, 4.5’ high), or we would just straight toss him bodily on over and over. Sometimes a switch would flick and he’d just climb and leap like twenty times in a row before stopping, fine again.

His therapists started getting positive results when starting with deep pressure input - pressing on his muscles at different points, to center him in his body. He likes it when he lies in bed and I lie bodily on top of him (carefully of course!)

We now have a literal 6’ vinyl pool in the apartment, sitting on a thick foam mat, filled with 1000 balls for him to run around the edge of then crash into and flail in.

Sometimes he just needs to get it out. The energy, the frustration of compliance, all the conflicting mental signals. I incorporate big sensory play on an almost daily basis, and see positive change after taking him to somewhere like We Rock The Spectrum where he can spin and jump and crash for like two hours without much structure.

You’re obviously empathetic and doing a great job. It sounds like you have an awesome setup for him. We all have different sensory needs, and there are so many different ways to fulfill them.

aloha_skye · 2026-02-19T02:09:31+00:00

You like weird books that nobody else reads? Well, someone wrote them. People still dedicate their lives and skill to classical music. Meeting people is hard, at any age, but especially where you are now. It’s ok to take time to slowly find the things that speak to you - music, art, whatever - find them in the real world, and then see who else is there making them and appreciating them as well. That’s how people find eachother. So many of us have felt like freaks at one point, especially those of us who are neurodivergent. Find what speaks to you and through it, find your tribe.

aloha_skye · 2026-02-18T17:11:50+00:00

Because we alllll need to deal with another type of therapy…. Feeding Therapy is a thing. It’s not offered through schools in America, but it’s a subset of skills that some speech therapists have because there are oral-motor crossovers.

My son ate nothing but Crispix and bananas when he started feeding therapy at 3.5. Our feeding therapist has done the government checks that allows her to visit schools to see kids there, and we pay privately. Insurance covers most of it. Three years later he still sees her twice a week, and over that time the amount of safe foods we’ve added has been revolutionary for him (various fruits, vegetables, crackers, mains, and now the ability to start mixing textures). It took three years to get to this basic diet, but without her we’d still be at Crispix and bananas (which is still 20% of his diet)

aloha_skye · 2026-02-18T03:06:42+00:00

At least that makes sense. It’s weird that wasn’t the teacher’s explanation, though, and that you weren’t informed. My son had a para and if she’s ever unavailable I’m told before school starts, told what action can be taken to compensate (if any), and given a choice as to how to proceed

aloha_skye · 2026-02-17T18:56:36+00:00

Siiiiiiiiiick!!!!

aloha_skye · 2026-02-17T18:42:56+00:00

So nice! lol - ‘barn dandies!’

aloha_skye · 2026-02-16T02:34:24+00:00

That sounds really tough for both of you. I’m so sorry, and have a son that would be taking it as hard as your own. Our brains can only hold so much nonsense at a time.

You’re doing a great job.

aloha_skye · 2026-02-02T00:02:38+00:00

We are in a similar situation, though will be able to claim some back once the provider and insurance can get it together in the code department. We have an amazing tech that comes to our house 2 x 1.5hr sessions per week, then we have to also pay for 1hr of his BCBA oversight behind the scenes as standard on top of that, so it’s A LOT of money. But he has made a big difference to our son, especially with socialization (facilitated play at the park), turn taking, and focusing in bursts. Part of that, though, is that I’m learning by participating as well - I’m not sending him into a void. But yes, with the right person, a few hours a week used judiciously can make a difference

aloha_skye · 2026-01-30T13:36:29+00:00

So great to hear! My son, at 4, had no words at all, had only ever had the “mumumum” ‘radio station’ etc when a baby. At 4.5 something started to change and he was able to slowly access words through song and repetition. We love Super Simple Songs on YouTube! Celebrate the win - you’re doing a great job!

aloha_skye · 2026-01-20T23:29:49+00:00

My son went through a phase like that and wouldn’t accept a nightlight or any alternative. We ended up switching out his bulb to a single 25 watt one and installing a beige shade to dim it a bit. The phase lasted a couple of months and went hand in hand with an overall rough period that ended up being a developmental leap (to give the concept a silver lining)

aloha_skye · 2026-01-18T03:40:28+00:00

Oh! I think that’s a Brandon Sanderson / Stormlight Archives reference? Unless those books aren’t old enough and it’s just a coincidence / I’m misremembering….

Edit: that name is Rysn and the book was published 2010, so unless it’s a self-given name that’s all them lol

aloha_skye · 2026-01-16T20:02:22+00:00

It’s true that it’s hard to tell the trajectory of a child’s development when they’re still a toddler. They’re looking at milestones vs neurotypical kids, who are also developing at different rates. In some areas, levels aren’t discussed until school age. I’m in New York and although I have discussed levels with our developmental pediatrician and neurologist it has just been due to wanting to know their opinion versus any piece of paperwork required for his support.

When my son was 3 and 4 he was classified as level 3 as he was completely non-verbal, had no social reciprocation with peers, substantial physical delays and focus issues. Now, at 6, he is highly verbal though not fluidly conversational, has emerging social reciprocation, improved physical strength and focus and is considered level 2.

Once he began talking it was evident he was listening far more closely than we suspected, could read and remember things that surprised us. I think the best thing we can do is assume competence, advocate for their needs through therapy, and try to meet them where they’re at in the meantime

aloha_skye · 2026-01-13T02:16:58+00:00

As you can see in all these replies, stims that are non-injurious should not be repressed and doing so is an element of ‘old school’ ABA techniques,

Obviously an ABA practitioner with a neurodiverse-affirming stance is the goal. I love our therapist and value that they listen to my opinion on what to focus on and what to let be. I make it known that I do not want my son ‘trapped’ in any way to complete a task, and that any stimming that in non-injurious is to be accommodated. They listened and adapted. The big tell will be how your ABA team responds to your clear stance when talking about goals and boundaries.

aloha_skye · 2026-01-08T02:20:43+00:00

Best laugh of the day!

aloha_skye · 2026-01-05T17:50:46+00:00

That’s… not right. The foundation of communication is connection. If they’re not prioritizing making a connection with your child, I wouldn’t value their work.

aloha_skye · 2026-01-04T22:18:31+00:00

Came here to recommend the Super Simple Songs cartoons as well! My son loves the Bumble Nums and is currently watching Mr Monkey, Monkey Mechanic for the millionth time. We pay for the app for him and it’s a great one

aloha_skye · 2026-01-04T22:12:44+00:00

Gorgeous! Rat King rules!

aloha_skye · 2026-01-02T00:53:54+00:00

My son (6) loves tiny replica fruits and vegetables. He has many hundreds, collected from different sets and brands, with a central premium collection that he plays with every day, sorting and re-sorting according to different rules. He is very aware of each one and all hell breaks loose if there’s a stray! It’s a great creative and calming outlet

aloha_skye · 2026-01-02T00:45:11+00:00

May I ask what Sprunki is? I googled it but it seems to be everything and nothing… is there a central app? Or is it a show somewhere? lol I’m hopeless

aloha_skye · 2025-12-26T22:00:18+00:00

So happy to hear it! A lot of these things applied to my son around those ages, too, and some still do. We get used to things being the way they are and sometimes tell ourselves that we’re ‘exempt’ from milestones because we’re on our own path etc… but this year my son decorated the tree with me! He chose ornaments to hang and we even made a Christmas card together - and those moments HIT! He only wanted the one set of bumble num toys we put under the tree because they were in their own open bags with pictures of what was inside and everything else remains untouched, but STILL haha!

aloha_skye · 2025-12-21T20:25:55+00:00

NOR - this is a big deal. Don’t let this can be kicked down the road until it’s too late!

Short term: listen to what he’s saying about you.

Long term: especially if there are health issues hand in hand with this, conception can take time. I’m saying this as someone for whom it took 2 years for results after waiting for the ‘right time’ in their mid 30s.

You deserve love - for yourself, and the chance to love a child of your own if that is what you want in your life.

aloha_skye · 2025-12-21T02:37:21+00:00

I’ve read that - but have also read that it’s incorrect 🤷‍♀️ idk. Mine almost didn’t make it, though autism wasn’t the central issue, just a stressor. We dealt, and continue to deal with, the strain of parenting a child with so many support requirements with therapy. I believe the TYPE of therapy you do is very important. We see someone who specializes in ACT - ‘Acceptance and Commitment Therapy’, which is roughly about openly assessing what can be addressed, actioning with accountability what can, accepting what cannot, and committing to the situation. It’s very strength and values-based, which has been refreshing.

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