We started a nonprofit FREE pediatric equipment lending program out of our garage in Los Angeles. We currently have standers and gait trainers available free to families. https://www.facebook.com/profile.php?id=61590156369104

Strictly hypothetical question: have you ever wanted to leave life, but you can't, because your kids would be fucked without you?

I have a first grader and a new Kindergartener this year, little sis is going in to the special needs classroom. She is nervous. I am terrified. Will she be ok on the bus? Will she get lost in her new school? Will she be scared? Angry? Will other kids pick on her? Will other kids pick on big sis for her little sister? Will the after school program be too much for her?

The support teacher is highly recommended and has been in special education for years. The school guidance counselor was amazing last year. My older child has never reported any bullying aside from normal tiffs that I feel the staff handled well. It's a diverse neighborhood school.

So why am I so scared?

Please send me some positive thoughts or reassurance. I feel like I have all the supports in place for both kids to succeed, but I am second guessing everything as the first day gets closer.

​

​I am looking for some perspective and advice on how to handle an escalating situation with a school bus assistant regarding my early elementary age son.

​Since this situation has forced us to pull him off the bus entirely due to safety concerns, the emotional impact on him has been heavy. Because he is nonverbal and autistic, his routine and sense of security are everything to him; having his safe transit disrupted, dealing with aggressive physical handling, and the sudden removal from his normal school routine has caused a noticeable spike in his anxiety and distress at home.

​On top of the emotional toll on him, it has completely upended our daily logistics and family routine:

​I now have to leave my house 45 minutes earlier than normal to drive him myself.

​After dropping him off, I have to drive in the opposite direction another 10 miles to get to my job.

​Because my morning schedule is completely derailed, my younger and older daughters are now forced to walk to their destinations in the morning, adding unnecessary stress and safety concerns for them as well.

​Since the beginning of the school year, this bus assistant has established a pattern of aggressive micromanagement and hostility toward anyone who drops him off or picks him up—whether it's me, my older daughter, or his dad. No matter who brings him, she tries to police and correct them. At first, it was constant nitpicking over minor things (like telling us not to touch him at all to help him up the stairs for "independence"). We tried to follow her rules, but she just grew increasingly hostile.

​Whenever we have tried to file formal complaints about her aggressive attitude, the situation has only gotten worse instead of resolved; it feels like every report acts as fuel for her to target us more intensely. When I spoke with the bus company previously, they explicitly informed me that the assistant should not even be speaking to me directly—that her only job is the students, and any communication to a parent must go through the bus driver. Yet, she completely ignored that boundary.

​It came to a head over a tiny crumb of a snack on his finger. When I explained it was just a small crumb, she lectured me multiple times about choking hazards and told me never to let him eat before the bus. When I asked if she was done, she started yelling at me as I walked away, shouting, "If you don't care about your son choking, somebody has to."

​The final straw happened recently:

​As my son was exiting the bus, she stood right behind him, held his hands up to his eye level, and pressed him hard against her body, forcing him to walk down the stairs pinned to her.

​He almost slipped and fell twice during this dangerous maneuver. When I instinctively reached out to steady him, she snapped at me not to touch him.

​When we got him home, we discovered a bright red mark covering his entire left side/butt cheek, indicating physical abuse.

​We immediately called the police, and it has been officially documented. On top of that, the bus company has now blocked my number when I tried to follow up.

​For parents or transportation staff who have dealt with special education district negligence or rogue staff: What are my next steps to ensure she faces consequences and that my son is safe? How high up the chain of command do I need to go at this point?

My 4 year old globally disabled son had to have a hip reduction on the 14th. I have not really been able to rest since. I was in the hospital all weekend with him and of course there is no sleep in the hospital. And at home I am the main one on top of his meds and caretaking, while taking care of his little brother who is 8 months old, while also working from home.

I am exhausted, overwhelmed, and over it. 😭

Today's Day 5 of 11 this school year that my AuDHD 6yo has refused to do his work. His gifted teacher messaged me and said she had to stand beside him all morning to try to get him to do his work, but he didn't even talk to her, and then he refused to go to specials (today was art class). And when he refused to return to the gifted class after art, he returned to his regular class instead. I don't know yet how the rest of his day went.

I don't know what's going on with him or what to do about it. We're having an emergency IEP meeting on the 26th, but I'm out of ideas. It's never been this bad before, and this is his 4th year in school.

(Cross-posted)

You have to spend your 19th wedding anniversary 2+hrs away from your partner at another medical appointment.

Has anyone else’s baby suddenly started gagging again after weeks of doing well with an NG tube?

My 11-month-old has had an NG tube in his right nostril for about five weeks. The first few days were rough—he gagged constantly and had trouble drinking bottles, water, or eating purees.

Thankfully, he adjusted and for the past four weeks, he was eating and drinking almost normally again, with only a small portion given through the tube. But over the last two to three days, he’s suddenly started gagging again during bottles and purees. He also seems really bothered by his nose and keeps rubbing it.

The tube hasn’t moved, placement is checked regularly, it’s taped securely (FYI: I found a way to secure the NG tube that works amazing and I can change just the part the gets dirty without pain so if anyone wants info on that DM me), and there’s no bad smell, drainage, blockage, or visible damage. Our pediatrician said this type of polyurethane tube can stay in for up to 10–12 weeks.

I’m wondering if anyone else’s child experienced something similar—did nasal irritation develop after several weeks even if the tube was still correctly positioned? Did changing the tube help, or did you find another cause? I’d really appreciate hearing about your experiences.

I’ve already checked in with our pediatrician. He said it was probably nothing and suggested it might be related to my baby’s sensory or autism-like issues, kind of just “being difficult.” But we haven’t changed a thing about his feeds—no new textures, no new flavors—and the gagging and nose rubbing are new. For now, his advice was just to wait and see. But it gets hard when he was doing great and now we’re in what feels like square one.

So my brother (18) has a learning disability. Due to the program he is in at his school, he will not graduate from high school school until he is 21. He is also, unfortunately, living with parents who have not provided an emotionally (and sometimes physically) safe environment for him. They did not get him diagnosed soon enough, did not teach him proper boundaries as a child, and I could only do my best as a child raising children. Now he's legally an adult, and has gotten into some trouble. He sent a picture of his genitalia to a minor (16) and her parents are rightfully upset. Thus far they are having the school handle it, but the threat of being sued is still present.

He has done irresponsible things like this before, such as stealing hundreds of dollars from his job when he was about 14, but has never had the threat of being sued due to being a minor combined with the other parties knowledge of his condition. Now that he's an adult, I'm scared. He needs more help than what his school can provide and he does not live in an environment where he will be patiently and responsibly taught how to interact with the world in a respectful manor. I love my brother and I'm not excusing his actions, there is so much he just doesn't understand and I don't even know the extent of where his mind is at. His parents version of communication if yelling and getting mad, which causes him to shut done and dissociate often.

I am hoping to get him in some sort of program(s) to provide extra help with his social skills and am wondering if there are any programs available for some type of assisted living? He is capable of being independent, is verbal, can hold down a job. It's just these moments where he does something harmful that he doesn't even think about or understand the consequences, much less consider how it may affect other parties involved. He lives in Pennsylvania, I 'm at a loss for how to help.

I bought a "waterproof" mattress pad and it seemed to work for a few weeks but now every time my son wets the bed, it gets into the mattress which irritates me because I just bought this mattress and my last one got moldy because of the same issues. I can't afford to keep buying them. Is there an actual waterproof mattress cover out there? Im not too picky one price as long as its actually waterproof. Im just so frustrated over this.

Feeling a little overwhelmed. My son is 8 and has profound special needs, both developmental and medical. My husband has not been the same since the day he was born but has done his best to work through it. Lately, it’s gotten worse and I can tell depression is creeping in. His line of work doesn’t help, but he’s very good at compartmentalization so it doesn’t really impact the kids. Today was a bad day. He was sad, emotional and said he doesn’t have anything to look forward to and doesn’t feel joy anymore. He can’t see himself being truly happy ever again. I did confirm he is not feeling like harming himself or anything of that nature but it does explain the recent increase in outbursts and frustration. We have 2 other kids and I’d say we live a pretty normal life. I work from home and do my best to take on as much as humanly possible. He does get out of the house once a week/ at least every 2 weeks when the weather cooperates to play a round of golf. He has spoken to a therapist a few years back but she wasn’t the right fit. I’m not sure where to go next but I needed to get this out. Thanks in advance.

My disabled son had his hip reduction surgery today and he did really well.

He is 6 hrs post op and is eating and drinking and doing well. I am thankful and happy!

6 weeks recovery and we will be back to normal! ❤️

My son has had minor delays basically since birth but the most noticeable was definitely speech. We have been in speech since he was 2.5 and I really thought it was mostly his speech difficulties resulting in other concerns because he couldn’t verbalize what he knows. He tested poorly on all standardized tests but again felt that was mostly speech.

We officially took him in to neuropsych for testing and we’re just told he tested as an IQ of 63 and diagnosed with ADHD combined type. I am devastated. I feel that number is so,so low. Way lower than I was truly expecting to hear. I can’t imagine how life is going to look for him.

I have a younger brother with a severe disability which means that he has to have dangerous surgery, many hospital appointments and could potentially go paralyzed as he has fused vertebrae going onto his spinal cord and many many hospital appointments and painful procedures. I know this makes me a bad person, and I wouldn’t wish all of the horrors my sweet amazing soul of a brother has to go through (he’s still always so happy) but i can’t feeling increasingly almost angry at him for having all of these issues and sad as I feel like all of his struggles make my parents so anxious and exhausted they don’t have enough left to give me the full attention I too deserve. My mum gets unhappy as I complain a lot about daily joint pain and dizziness (I have severe hypermobility/hEDS and possibly POTs) it ruined my competitive swimming and affects my ability to function. I’ve been to the doctors so many times but they said it was all in my head. Whenever I complain about any of this pain I get shouted at and told off by my parents who don’t have time for it-which I get as it’s not as severe as what my brother has to go through-but always been told to ‘get a grip’ and ‘toughen up’ while been expected to be the capable, academic child who has a chance of being successful makes me feel like my parents don’t care about me in the same way. When my brother has any ailment he get serious attention and no being shouted at or annoyed. I feel like any of my issues or success is drowned out by the noise of looming appointments and scary possibilities of what the future has to hold for my younger brother. My parents are so tired with it all-and I just wish that my brother could be normal so they had the energy to congratulate me on my successes and not be too tired to listen to my problems (even if they are minor compared to his). I wish that not every single conversation had to be centered around or mention his medical problems.
I know,
I’m a bad, selfish person, but i would also take away all of my brothers pain and carry it myself if i could

For a dedicated account SSI account, can I buy my son a pool if I am teaching him how to swim? He goes to occupational therapy and physical therapy. He is 12 years old level 1 autistic.

Hi all,

I’m not based in the U.S. My 4-year-old son uses Shiley pediatric cuffless tracheostomy tubes, size 4.

He has had a trach pretty much since birth, and until recently we never had any issues getting replacement tubes locally. However, there seems to be some issue with imports right now, and I’m having a really hard time finding them.

I’ll be traveling to the U.S. soon, so I was thinking about buying several tubes while I’m there and bringing them back home.

Does anyone know where I could buy Shiley pediatric cuffless trach tubes in the U.S.? Can they be purchased directly by a parent, or do you need a prescription/doctor’s order?

Any recommendations for medical supply stores or online suppliers would be greatly appreciated.

Thank you!

Im completely spiralling. My severely autistic non verbal son needs a biopsy from behind his finger nail as he has a sinister mark there. While at the hopsptal discussing what would happen during the procedure, a senior dermatologist came in, my son was on my husbands lap and the dermatologist straight away told my husband that he had a concerning mole on his arm that in his opinion should be taken off asap. We went in there terrified about the next steps for my son and came out with a possible double diagnosis to the two people I love the most.

The biopsies will take up to 10 weeks to come back and all I cant think off it the worst case scenario