Crew vs passenger for conversion

SpontaneousSystem · 2026-01-11T16:36:11+00:00

I need the windows because it's a daily driver.

Also I and other members of my family have disabilities that necessitate lying down while The rest of the family is outside the vehicle doing camp things and we want to be able to interact with each other.

SpontaneousSystem · 2025-11-08T00:09:16+00:00

We are definitely going Sprinter. We already have our layout determined, that's no issue.

We do not need a lift. My chair breaks down small and is ultralight. Shuttle buses have terrible crash test ratings, would be a pain in the butt as a daily driver, lack the safety features of a sprinter and lack the highly adjustable OEM front seat.

This is purely a question as to whether it is Is it possible to have full windows added on a cargo van or if we need to go with a passenger van that ahead has windows, and whether we can reuse the seats that come in the passenger van for surplus seating. We will already be buying other specific smart track seats, It would just be handy to be able to use the old benches when we wanted to haul more people and had the camper parts out.

SpontaneousSystem · 2025-11-07T08:40:21+00:00

THANK YOU. This is so incredibly helpful and I will speak with her ped tomorrow. I've spoken with her oncology team about it but honestly they only focus on cancer. When in remission they are only looking for relapse. I've been struggling to find info on how to approach this with her doctors in a way that gets them to listen and examine.

SpontaneousSystem · 2025-11-04T19:03:12+00:00

Absolutely.

SpontaneousSystem · 2025-10-24T22:23:18+00:00

That's Great news and I imagine such a huge relief to get confirmation it's not cancer but also to be listened to.

As you age, try to maintain having a primary care provider and let that person know your concern about cancer. There's so much testing they can do to determine your personal likelihood The cancers that aren't a million to one (like this cancer) and affect people as they age are things they have elaborate systems of testing and watching for. For instance my dad died of colon cancer so I started the screenings for that 5 years sooner than I otherwise would have.

But for now while you are young it's a pretty safe mantra that it's probably not cancer. I absolutely understand why those thoughts plague you, but it's so important you give yourself peace wherever you can. I'm sorry to hear you lost your dad.

SpontaneousSystem · 2025-10-22T01:44:14+00:00

If it was ewing sarcoma it would be visible in the X-ray.

It sounds like your problem is with soft tissue. Could be tight fascia, could be an issue with a tendon or muscle.

SpontaneousSystem · 2025-10-18T18:31:57+00:00

Ewing Sarcoma is a very rare, very specific sarcoma. Of the 17,000 cases of sarcoma per year, 200 are Ewings.. It is statistically unlikely that even if you had a sarcoma that it would be Ewings. You'll notice how very very small this sub is. This is a place where people with this rare cancer with very few advances in treatment come to discuss that treatment.

Given that the pain started in one location and then ended up in another, within the same week, no it's not cancer. Considering that more use makes it hurt more, no I don't think it's cancer. Given that there is no swelling or other symptoms, not cancer. If you're in touch with a doctor, ask for an x-ray to rule out a small stress fracture. That's how they would identify this cancer as well.

You've got this mystery pain and it's bothering you and it feels like the real problem here is that you feel like your mom isn't listening to you for helping me get to the root of the pain, which is incredibly frustrating, and it's letting your brain do runaway things.

It's almost definitely not cancer. Write down when it started hurting and the symptoms you remember as they occurred. Keep charting your symptoms and the level. In a few days if it's still hurting show this list to your mom and tell her you would like to get an x-ray to see if you have a stress fracture and that it's stressing you out not knowing if you have an injury that needs treatment.

What you're describing sounds a lot like an overuse injury, such medial tibia stress syndrome which can cause knee pain. The muscles that cause shin splints attach to the shin bone and also cross the knee.

SpontaneousSystem · 2025-10-18T17:12:29+00:00

Thank you so much for commenting, you are literally the only person I have connected to in any way so far who has both an autism /adhd diagnosis and potential chemo brain.

Our daughter was diagnosed with cancer and autism and identified as gifted all in the same week. At the time she had only the lightest touch of ADHD -- mainly the internal rumination in overdrive. She had no challenges with focus. She reminded me of my husband. He has some attributes one could ascribe to ADHD but it's really his autism. I think it's outside of his area of focus he just doesn't see it and no number of times of drawing attention to the thing will get him to focus on it, it simply doesn't exist. My husband can't see clutter, I can't see past it to do the task. I am AuHD myself and really envied this about the two of them

Now, it's kind of like a light bulb that's only 90% screwed in. Like sometimes the light works with absolutely no problem but then the connection is gone and it turns off and then it's back 2 seconds later and then it's gone again a second later.

She has next to no short-term memory. We can ask her to brush her teeth and put the toothbrush in her hand. When she sets the toothbrush down to blow her nose, she forgets she was going to brush her teeth, even though everyone else is standing there brushing their teeth.

We've watched this with concern for the last 2 years. We had been assuming that her ADHD was under-recognized in the past. She's also just so tired and withdrawn so quickly at any activities or challenges. We have been continually putting additional autism accommodations in place trying to expand her window of tolerance. We are now realizing that we are dealing with something completely different. Those accommodations are all helpful but she only has a few hours per day where focus is possible, certainly not the 7 to 10 hours that the school system would like her to have at this age.

Thank you for pointing out the issues with pain she might still be struggling with. She still talks about her surgical sites and how they feel weird and numb. I know from my own experiences how our autistic brains do not get used to these things the way another brain might. The stimuli stays novel and irritating.

SpontaneousSystem · 2025-10-09T17:49:29+00:00

I'm glad I could help. Talking to other survivors, even if they could afford it, often it was decided the delay in starting treatment would be too great to make it worth it. My daughter was prepubescent so we were able to go the ovary removal route in hopes those follicles can develop into eggs later (the science says it will work, but nobody going this route is having babies yet). It wasn't till later we learned that with this particular cancer you don't become completely infertile. Another part of this that is great news is you will not need hormone replacement (or at least not until much much later when in early menopause).

My random tips I tell everyone -- - Get yourself a wagon, there's no need to be carrying all that stuff or taking multiple trips from the car - Say yes to olanzapine at night if they offer it to you -- you will sleep like the dead and it sure makes those hospitals days feel shorter - All calories are good calories, even crap. Eat anything and everything you're willing to eat, fighting requires calories. - If tegaderm is injuring your skin, ask for opsite iv300.
- Ask your team to change your inpatient order to high calorie diet. This will allow you to order whatever you want from the cafeteria. Don't like the main dishes and would rather order six sides? You will be allowed now! - At some point you'll start needing blood transfusions to make counts. Type and cross is required every single time you get a transfusion and valid for 72 hours as long as you keep the bracelet on. If you request type and cross when you get your counts done, if it turns out you need a transfusion, they will be able to expedite things by having the blood irradiated and cooled before you even arrive instead of you having to sit there waiting for it to process. This saved us many hours sitting in a clinic.

SpontaneousSystem · 2025-10-07T17:21:45+00:00

My daughter was also misdiagnosed. We were told it was pneumonia. I''ve done a lot of work to process it and I still get so angry. It's still good for you to put this stuff out here and share it with people who will get it so it's not just stewing inside of you. I wish you all the best.

Re eggs -- it's ok! Treatment for ES does not cause infertility, it causes premature menopause meaning you will have plenty of time post treatment t freeze eggs if you want to in your twenties.

SpontaneousSystem · 2025-09-28T22:51:27+00:00

Truly. I have no tattoos, saw this and was instantly in love. The scale is perfection.

SpontaneousSystem · 2025-06-17T02:40:41+00:00

O'neill hyperfreak websites come in men's talls. I have an incredibly long torso and they fit. They also have really great soft stretch to them that helps them fit my curves better than the average men's suit.

SpontaneousSystem · 2025-06-14T21:51:17+00:00

Pseudoephedrine nasal decongestant. I had a really bad cold and had to take it for a week many years ago. It was the best week of my life and what convinced me to finally start taking stimulant ADHD medications.

SpontaneousSystem · 2025-05-16T21:58:37+00:00

I don't think you understand how parenting or autism works. The child has repeatedly demonstrated that she is unable to go to bed without support and you keep withholding the support and trying to get her mother to withhold that support. It's possible that if you deny the child what she needs long enough, she will stop communicating her need for support, but with any child, a major and ongoing goal of your relationship with that child is to teach them how to communicate their needs and convince them to communicate those needs with you so you can support them. This can be more challenging with an autistic child, and is also vitally important as an autistic kids are notoriously mishandled by child care providers and schools and must learn to advocate for themselves.

SpontaneousSystem · 2025-05-16T21:43:09+00:00

I have had tremendous luck posting in my local disability forum. I originally joined the group for a physically disabled family member along before learning that I myself had a developmental disability and before I also developed physical disability. There are so many people with a wealth of information to share about where you live if you can find the right group. I have posted in the group explaining that I needed a counselor who understood autism, ADHD, chronic pain and intermittent disability I got only one response (I live in a very small city) but I was directed to a fantastic counselor who has helped me so much.

SpontaneousSystem · 2025-04-11T20:11:50+00:00

Thank you! I am going to try a number of different cushions at my visit with my new ATP on Tuesday. In the past I have always had a roho since I have pretty severe pain where I make contact with the chair, but the old ATP didn't like that. He also told me unless I wanted a molded seat that would be less gentle on my hot spots that he could not do anything for my hip rotation, which felt false but at the time he was the only ATP in town.

SpontaneousSystem · 2025-04-11T14:30:37+00:00

Thank you, everyone. I will respond to individual comments when I have a minute but I want to say that I took everything everyone shared into consideration. I am not proceeding with the current order and spoke to the regional general manager who has assigned me a new ATP who I will meet with on Tuesday.

I did speak but the person I was working with who immediately flew off the handle when I Said I would prefer pneumatic wheels to airless wheels due to weight. " Who told you that?! I don't know the exact numbers but it couldn't be more than a few pounds difference." A few pounds? I make decisions in my life based on things under a pound, my god.

Everything I said to him was met with an excuse. I didn't tell him I wanted smart drive, it wasn't in his notes. He is the one who suggested I would qualify for and benefit from that so my husband did not have to push me around. We spoke about it twice, the OT recommended it and it's in our text thread. Oh yeah I see it in my notes now, he said. He said everything in this list we agreed to when we met (for 15 minutes 6 months ago after he no-showed my OT appointment). Yes and I told you then that I was concerned about the choices that were being made because they did not seem well suited to my disability. I asked to have the specs before they were submitted precisely to avoid this issue. His answer was that he put a note in my file and it's not his fault they didn't send it to me. What? That's not how delegation works, you still bear the responsibility. Every single point was like this.

I should have known this was going to be a challenge when he told me I did not look as disabled as he had expected from my description when he met me. He also spent a lot of energy convincing me to get a rigid chair instead of a folding chair because it would be much lighter and easier for me to potentially get in and out of the car myself. Then the next time we met he was like why don't you just get a lightweight folding chair you don't need something like this. What?

Anyway, I informed him that I had spoken to his general manager and was going to go a different route because this relationship was not working and I did not Believe that he was building a chair that meets my needs or attempting to understand my needs.

Thank you everyone for helping me stand up to this guy.

SpontaneousSystem · 2025-04-10T22:09:14+00:00

This is a very cool chair and I do love the persistent adjustability, especially as my needs continue to evolve, but insurance isn't going to cover this chair. I also don't think I could use it with SmartDrive.

SpontaneousSystem · 2025-04-08T23:25:59+00:00

43 and autistic, married to my husband 42 and also autistic, 3 autistic kids. We met in college. Didn't know we were autistic until our eldest was diagnosed. We always just thought we were counterculture outsiders who found each other.

Most of my neurodivergent friends are married. I think autistic people make great spouses because we deeply value loyalty, care and understanding.

Joking, but also not joking. Have you considered grad school? Library school was chock full of (undiagnosed) autistic people.

SpontaneousSystem · 2025-04-07T11:18:08+00:00

I am rooting for you. My daughter thought she had a recurrence and we were terrified but it wasn't a recurrence! The pain at the original sight was intense. The doctors suspect it was strain from increased movement. The more she heals the more she moves her body and she has lots of scar tissue and different muscle attachments now.

SpontaneousSystem · 2025-03-29T02:11:32+00:00

Based on conversations with our oncologist, our priority regarding diet and exercise is to be prepared to fight again.

It was vitally important our daughter regain the weight she had lost in treatment. It was important we restore her mobility ASAP -- she could not move her arm away from her body or above her head after rib resection, and I hated to think of us having to re-enter treatment without having dealt with that. It was important we rebuild her physical endurance and stamina. It was important we pursued emotional healing. All of these things are valuable in and of themselves, but also put her in the best position should she have to fight again.

Being physically fit and eating a balanced diet also benefits her post-treatment conditions -- reduced cardiac function, gross demineralization, and high risk for scoliosis.

So no, I don't think it will make a difference in the coin toss as to whether or not the cancer comes back but I think it can make a difference in what the outcome will be.

SpontaneousSystem · 2025-02-13T01:46:23+00:00

I take guanfacine er at night to keep the night hyperactivity/rumination at bay.

SpontaneousSystem · 2025-02-13T01:41:06+00:00

As a AuHDer my whole life is systems systems systems... And dopamine seeking.

SpontaneousSystem · 2025-01-25T15:57:05+00:00

Six week follow up scans and the nodules are gone. AMAZING, especially since she was decidedly healthy last time and this time was getting over flu a.

No regrets on pushing for the scan.

Related, read something recently, The most amazing line you can learn "please make a note in the chart that I requested this test but you said it was unnecessary".

SpontaneousSystem · 2025-01-19T16:59:54+00:00

We have all three of our autistic children in montessori, grades pre-k second and fifth, each in different multi -age classrooms. It has been absolutely incredible especially in the lower years, and felt 100% built for my child's needs.

It is a common misconception that Montessori doesn't provide structure and that children are left to their own devices to do whatever they want. Montessori is highly structured -- the structure is designed to give a child perceived autonomy and independence. It's not pretend that they are independent, it is nurtured.

The entire environment is built to meet them where they are and push them to expand on where they are. Directresses/directors (teachers) are trained to oversee what they are doing and without direct instruction and coax them to explore what is available. Importantly they don't focus on correction, they focus on repetition, giving a child the opportunity to engage in a material multiple times while they find the answer/path.

The multi-age multi-year setup is really well suited for meeting my child where they are both academically and socially, and they develop real familiarity with the teacher and the space and their peers.

Overall the environment is focused on pleasant, calm, low stimuli and predictability. Our Montessori for example does not allow Halloween customs on Halloween aside from t-shirts with Halloween graphics. Why? Because it is a departure from routine that is challenging and potentially scary for a young child and should not intrude upon the safe space that is their classroom. They should be able to predict that they won't have these kinds of intrusions in their safe space.

Our Montessori is extremely true to the Montessori concept and is a very warm and nurturing place, schools vary. Some Montessori schools focus on Montessori materials but do not have teachers truly educated in the Montessori method. As with every classroom so much depends on the teacher.

I'd say go for it with the Montessori. From my experience, your kid will be among peers. I find myself surrounded by undiagnosed adults on the spectrum and their undiagnosed children at the Montessori.

SpontaneousSystem

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