r/specialneedsparenting

My child was recently given an official diagnosis of spastic cerebral palsy, and I’m trying to learn everything I can about the resources, benefits, and support that may now be available to our family.
He is currently receiving occupational therapy (OT), physical therapy (PT), speech and language therapy, and feeding therapy. He also recently started taking gabapentin.

I’m looking for as much information as possible regarding available services, financial assistance, early intervention programs, adaptive equipment, insurance benefits, nonprofit organizations, educational resources, and any other programs that could help him reach his fullest potential.

He is currently 14 months old (11 months corrected age). He is very attentive, social, and engaged. His motor skills are delayed, but he continues to make progress. He can roll, move around on his belly, and sit independently for about seven minutes. He has excellent head control, tracks people with his eyes, shows stranger anxiety, and is beginning to experience separation anxiety from his parents.

For those of you who have been on this journey, what resources, programs, grants, therapies, equipment, or organizations have made the biggest difference for your child or family? Is there anything you wish someone
had told you right after your child’s diagnosis?

I’m open to any advice or recommendations. Thank you for taking the time to help.

Im considering putting my young special needs adult son into a facility that can take care of him... any advice or recommendations on how I start this process. Im not 100% sure its what im going to do. He is just getting very difficult to take care of and its hard to work or do anything for that matter. Im just coming out of from being incarcerated and he was still an adolescent at the time so now that he is an adult and out of school its a whole different level. Im really just lost and confused when it comes to this right now. I keep googling stuff but it doesn't make alot of sense I plan on making some phone calls Monday but would like some input from someone who has had to deal with this. Thanks!

I have spent the last four years trying to make it work, getting my child the support she needs, and working full time. But it's all coming to a head and I will probably have to quit my job when the school year starts again.

I love my job. I really love what I do, I have great coworkers and good benefits and decent pay. But I don't have before and after school care to meet my kid's needs.

I am on lists for private nannies and specialized day cares but I have no hope we will move up the list in the next few weeks.

I don't know if I am cut out to stay at home. I worry I will end up resenting all of this. I love my current job. Part time isn't an option at this office. I'm just really grieving the life and achievements I wanted to make for myself.

Unpopular take from an autism dad: I've never been afraid of screen time. I think the phone is becoming a kind of social organ, an extension of how we connect, learn, and reach each other. For me, the question was never whether my kid is on a screen. It's what the screen time is for.

A bit of where this comes from: my 10-year-old is on the spectrum, multilingual, but doesn't read and write nor really converse, yet he taught himself English from YouTube, he can search you tube to get to what he wants (animals pictures) and when he wants to tell me something he can't say in words, he'll scroll to the exact frame of a film and play it. The Pinocchio-and-Geppetto reunion hug when I come home from a trip. That's "I missed you." For him, the screen isn't an escape from connection; it's the bridge to it. He learned animal names in multiple languages from videos and became a master of online puzzles. He watches only classic artistic or educational videos. Or

But I'm not naive about the other side, and I don't want this to come across as a free pass. The same device can numb a kid, isolate them, wreck their sleep, and become the place we park them when we're exhausted. That's real. At bedtime, honestly, no screen is the screen. A phone handed over to buy an hour of quiet is a completely different thing from a screen used for the good of the child and our relationships. Same object, opposite outcomes.

So the question I've ended up parenting by isn't "how many minutes." It's: Is it positive screen time, or is this screen time pulling us together or away? Does it teach, or numb? Bridge or wall?

I'd genuinely like to learn from this group, because I think parents here know things the research hasn't caught up to:

When does a screen actually help with your kid? Which apps, shows, or tools have earned their place because they connect, calm, teach, or give your child a way to reach you? Which are the dangerous ones or the empty-calorie ones you've learned to limit?

Hi all! I shared this in a comment on another post and thought I would share it as a separate post, in case it helped anyone rethink the way that they approach their work in the home.

I have been working for my children as an advocate since 2013, when my now 19 year old son had difficulties with the after school care. Last year I decided to rethink the way that I viewed my role as their advocate. This is what I put on my resume (if I ever get the chance to work back in corporate!!)

Disability services officer

Support of and advocacy for my children with special needs

Management of behavioural issues

Liaison with clinicians

Liaising with educational support

Analysis of clinical reports to achieve outcomes

Administrative work around assisting procurement of appointments and management of behaviour at these appointments

Liaising with NDIS planners and support coordination to ensure that outcomes are achieved to a high standard

Liaising with other parenting support organisations and parents to ensure that my support is child focused

Researching current behavioural development best practices and implementing these strategies

Professional development regarding specialist parenting support practices regarding individuals with disabilities

Hi everyone,
My baby turned 10 months old today. Two days ago, he had a nasogastric (NG) feeding tube placed because he wasn’t drinking enough formula and wasn’t gaining weight.
He has a genetic condition that is associated with poor appetite, and he also has cow’s milk protein allergy, so he drinks a hypoallergenic formula, which he has always strongly disliked. His milk intake became far too low despite our best efforts, although he was still eating purées reasonably well.
The first day after the NG tube was placed, we only offered formula. He drank a small amount by bottle, as he usually does, and the rest was given through the tube.
Today, we restarted solids. His first meal (rice cereal with fruit purée) went really well. He accepted the spoon, swallowed normally, and barely gagged.
However, at lunch everything changed. He started gagging repeatedly and eventually vomited, so we stopped the meal. At dinner, he gagged again and would keep the food in his mouth without swallowing. After a while, he would simply let it fall out of his mouth instead of swallowing it.
I’m wondering if this is something other parents have experienced after NG tube placement. I assume his throat is probably still irritated and he’s getting used to the foreign sensation, since it’s only been two days, but I’d really appreciate hearing your experiences.
Did your babies gag more or have trouble swallowing solids during the first few days? How long did it take for them to adjust? Is there anything that helped make eating more comfortable while they adapted to the tube?
The whole reason we agreed to the NG tube was because he wasn’t gaining enough weight from poor formula intake. But now I’m worried that if he stops eating solids as well, it will be counterproductive. At 10 months old, a significant portion of his nutrition should already be coming from solids, so I’m hoping this is just a temporary adjustment period.
Any advice or experiences would mean a lot. Thank you.

If you’re the parent of a child with a disability, this piece is for you. I know the questions you’re asking because I’ve heard them my entire life. They’re questions that come from love, fear, and wanting the very best for your child. There isn’t a perfect roadmap, and no parent gets everything right. But sometimes the greatest gift you can give your child isn’t protecting them from every obstacle, it’s preparing them to face the world with confidence. I hope this conversation offers a different perspective from someone who has lived with a disability his entire life. And if you’re a parent who has questions, worries, or simply needs someone to talk to, my inbox is always open. I don’t have all the answers, but I’m happy to share my experiences and hopefully make the journey a little less overwhelming. You don’t have to figure it all out alone.

Parent: My child has a disability. What do I do?

Me: You do your best.

Parent: What if they never learn to walk?

Me: That’s okay. There are other ways to get around. Don’t let one limitation convince them life has to stop.

Parent: I’ll have to take care of them for the rest of their life.

Me: You don’t know that. There are programs, resources, and support systems. More importantly, there are skills you can teach them now that will help them care for themselves later.

Parent: How will they ever make friends?

Me: The same way any child does. Teach them how to talk to people, be kind, listen, and be themselves. Disability doesn’t stop friendship.

Parent: Who will ever love them?

Me: You will. Love them the way they deserve to be loved, and you’ll teach them what healthy love looks like when they find it themselves.

Parent: The world is such a mean place. How can I protect them?

Me: You can’t protect them forever. Instead, teach them how to stand back up when life knocks them down.

Parent: I need to make everything accessible at home.

Me: That’s a wonderful place to start. But they won’t spend their whole life at home. Teach them how to navigate a world that isn’t always accessible.

Parent: I need to find other parents like me so my child can be around kids just like them.

Me: Support is important. Just don’t let other parents’ fears become your own. And don’t let your child grow up believing they should only be friends with other disabled kids. Friendship has never depended on disability.

Parent: What do I do if other kids make fun of them?

Me: You do what you can. But even more importantly, build their confidence so they know their worth isn’t decided by someone else’s opinion.

Parent: What if I’m not around to feed them or help them get dressed?

Me: Then teach them while you are. One day you won’t be there, so prepare them to be independent, not dependent. Every skill they learn today is one less thing they’ll have to fear tomorrow.

Parent: What if I fail?

Me: No parent is perfect. You’ll make mistakes. We all do. Just love them, believe in them, and teach them the skills they’ll carry for the rest of their life.

They don’t need a perfect parent.

They just need one who prepares them to believe they can live their own life.

: Special Olympics banned my autistic family member for having an involuntary sensory meltdown. Has anyone else faced this?

Body:

Hi everyone. I’m trying to process an incredibly frustrating situation and see if anyone else has dealt with this.

My family member, Gilly, is a 24-year-old gold-medal swimmer with autism and severe sensory processing issues. At a recent major event, the extreme crowd noise and loud environment triggered an involuntary "fight-or-flight" sensory meltdown, and he screamed.

Instead of helping him or providing a quiet space, the Special Olympics kicked him out and banned him from the upcoming USA Games. They are strictly enforcing their text-heavy "Athlete Code of Conduct," claiming his meltdown was "disruptive behavior." They are treating a biological symptom of his disability as willful misconduct.

To make it worse, they are completely stonewalling us. We have requested the written incident reports and the official paperwork regarding the decision to kick him out, and they are refusing to provide anything in writing.

Has anyone else dealt with the Special Olympics discriminating against lower-functioning or highly sensory-sensitive athletes? How did you fight a ban when the organization refused to give you the paperwork?

Hey I have an almost 5 year old child with complex chd, brain infarcts and epilepsy.

He is struggling since he started school as he feels very different than the other children. Before he started school he was a very happy child.

He can’t keep up physically and has started to call himself a loser amongst other things. He’s told me he is jealous that the other children zoom past him and that other children do things so easily and he can’t. He compared himself to Loki thors brother and said he might be driven mad by jealousy which made my heart break and also made me chuckle all at the same time.

He struggles with how loud school is too and is very dysregulated by the experience. He tells me he is lonely a lot at school as he stays in one corner where it’s quiet.

He seems very advanced emotionally to me like he expresses his feelings so well.

His confidence has plummeted. He doesn’t even attempt things that he was doing well with as his teachers are pushing him too hard.

I’m really worried about his mental health. He has a ton of medical appointments every month. He also has another open heart surgery coming up soon. I just feel like any child’s mental health is super important but with what he’s been through and still has to come throughout the rest of his life he needs extra help.

So ive recently been incarcerated and just got home literally last week. My special needs son has gotten so much bigger and more aggressive and much harder to deal with he will be 20 this month. He is non verbal non mobile and legally blind. Im faced with the trouble of being able to take care of him, he is such a handful and plus im faced with the troubles of being able to work and do the things that a typical person has to do, hes gotten so big and he's so hard to take anywhere not only due to his size but also his behavior. Im torn between trying to find something working from home or finding him a good care home to place him in. Im also a single mother I might add. What have any of you done? Can someone give me some advice PLEASE. thank you.

I’ve gone down the rabbit hole, trying to find a positive thread on which boarding School to send my son. He’s 16 years old. His behavior is out of control. I’m a single Mom and my fears that he’ll end up a drug addict drop out or will be put in jail. Seems like it’s a difficult situation. Not one person has anything really positive to say.

My son refuses to go to school. Refuses to go to therapy. Refuses to take his medication is physically violent towards me. I feel like therapeutic boarding. School is my last resort to get him the right help for his future.

Does anyone have any positive suggestions?

She was terrified of losing her "wallet." My daughter Noga is 27 and has severe dyscalculia. For years, money meant anxiety. To help her, I ended up coding a custom app that totally bypasses the need to calculate. She just puts in the price, and the screen shows her a visual picture of the exact physical bills and coins she needs to hand the cashier. Just matching shapes and colors. As a developer and a mom, seeing her panic over the broken phone was actually a weirdly proud moment. It made me realize that the true test of an assistive tool isn't just whether it works clinically—it's whether it reduces the cognitive load so well that the person actually wants to rely on it in the real world. When we got her a new phone, it was the very first app she installed, and she went straight to the store by herself. For the parents or UX designers here—how do you measure when an everyday tool truly becomes a "cognitive crutch" for someone neurodivergent?

To start, my 5 yr old daughter will be going to gen ed K with 1 hr a day of SAI - Specialized Assisted Instruction (pushed in) in the fall. She has an IEP, for speech delay, and orthopedic impairment (L wrist doesn’t supinate past 45o). She also has gross developmental delay diagnosis since about 16 months, LLD (leg length discrepancy), and autism (CARS 2) diagnosis at 3.75 yrs. She’s been going to OT & PT since about 18 months, ST since 2 yrs old through Regional and insurance. She did public Pre-school as collaborative ed, and Trans-K as collaborative ed, each with 3 hrs a day of SAI. The special program they had lost funding so they are no longer offering the collaborative ed program. Therefore, she is getting placed in a gen ed class. Her SpEd teacher in TK said she believes my daughter should be able to access the gen ed curriculum in K so they lowered her SAI from 3 hrs/dy to 1 hr/dy and I signed the IEP! But there is no data to support this since they were not able to assess her. She is considered nonverbal, even though she does talk but she is unintelligible to general public most of the time. She has access to AAC, but she prefers to talk. They basically said that she doesn’t know (or they can’t assess) her colors, shapes, can’t identify uppercase vs lower case and doesn’t know her numbers. And I totally agree. I’ve asked my daughter as well many times and she doesn’t say anything or always says red, though lately she says yellow too. After talking to some of the other moms with IEPs for their kids, they are concerned that the school district is NOT providing the appropriate sped options for mild to mod kids. I know the district is required to provide services to access the gen ed curr in California. But other than requesting a 30 day assessment after school starts I don’t know what else I can do to change her IEP, or maybe even change it back to 3 hrs/dy if that’s what she needs. She also gets OT, PT, and ST at school. And she’s been getting ABA 20 hrs/week for roughly 7 months out of this last year, which has helped and is helping, though she doesn’t have any ‘behavior issues’, it mostly helps with getting her to speak and say the appropriate thing, bc she mimics a lot. It may be that we end up taking K twice, but I’m wondering what more the school can be doing vs what I can be doing to help her be kindergarten ready. I don’t know what is typical, but she seems really far behind. I do want her in general ed, though I preferred the collaborative ed when it was available. What are some things I should be looking for that shows that she is not accessing the gen ed curriculum? What services can I request (Inclusion or Integration)? What works well for her case? We are in Southern California, in Orange County. I prefer not to say the city. I’m thinking of getting her a tutor who specializes in autistic kids, is it too early? With all the therapies, it’s a challenge to fit extra curricular activities but we do it somehow. All this helps, but I’m concerned they are not going to support her once school starts.

Hello,I am tutoring a kid near my home that kid is a special child there isn't really any academic pressure I just have to get rid of her mobile addiction and teach her some social skills also spend time with her. But the problem is that kid doesn't talk to me much stays distant. I also don't force her much in fear of triggering her.I try to engage her in activities even though she part takes in them she refuses to drop her phone and talk to me I am not much experienced in this field but I genuinely want to help her is there any way I can learn how to help this kind of kid there isn't much Material on YouTube about this.

So I (34F) have 3 kids. One of them is severly disabled. He has a muscle disease, wheelchair, breathing machine, gtube, its the total package. I love this kid to death, without making it a cliche. He is funny, sweet, smart and has his own independent creative thoughts about things.

My husband (39) doesnt seem to know what we’re dealing with. I do all the care. Like feeding him, the breathing machine, the paperwork, I talk with his docters, school, I clean his stuff, store his supplies. But my husband doesnt work fulltime, he works maybe 25% of the time. So he sits a lot at home, judging me. Why is the house messy? Why are you lying down? Why are you on your phone? Shouldnt you be cleaning like other women?

Its annoying, stupid and disgusting. I try to tell him that its a lot of work, taking care of a sick child. And then he cuts me off “yeah right, all you do is sleep”. I am burned out at this point. I am so exhausted, its not even funny anymore. I make sure that I cook most of the days, make lunch and breakfast for everyone. And the laundry and the basic things like showering the kids. In between i am tired and i try to take naps or lie down. The latest feeding is at 12 at night so most of the time I am in bed at 1. When I ask my husband to do the nightshift, he gets angry, and says he doesnt want to do it. Its so ridiculous, but I am tired to argue about it. Its easier to just fix it and be tired and frustrated later about it.

This man doesnt see me at all. Not in a literal or figurative way. He is a lot scrolling on tiktok, goes out with his family or friends. Sometimes he seems to avoid the emotional or mental load of whats going on. When someone asks how our son is doing he says “fine, he is doing perfect”. He doesnt acknowledge the weight of his disease and our condition. He might be in a sort of denial in some moments, but I dont feel its fair to our kid. He admitted that he was sometimes ashamed of him because he drools a lot. He doesnt have control over his muscles. And that felt so f-ed up, because oir son LOVES people. And loves to go to events, restaurants and stuff. He will take the other kids without a second guess. But when it comes to our sick child, he will say “its gonna be crowded” or “im not sure he will like it” etc. It makes my blood boil, because I end up thinking about an activity at home, and I am already on my last nerve.

The main thing for now is that he is in my neck, watching and judging me and I dont feel that he does enough. When he goes out, I feel so relaxed. I will put the kids to bed and read a book with a snack. Sometimes I even manage to clean the house and make it spotless when he is not at home. But the second he comes in, its like “why are there crumbs om the floor?” And he will touch them like a sort of inspector. “Didnt you take the trash out?” While he kicks the bin. I hate his behaviour so much. And yet he claims that we are destined together and that I need to stay. But he doesnt give me a reason.

I just wanted to vent honestly.

And I wanted to ask if this tends to get better?

Hi everyone. We are a UK family, and I would be so grateful for your experience. Our little boy had a brain injury at birth and is tube-fed, and he is doing well enough that we have a chance to take him to the US for a promising treatment trial. He is stable and cleared to fly.

For those who have travelled internationally, or to the US, with a medically complex little one, how did you sort the insurance and repatriation side? We are finding ordinary travel insurance will not cover a trip taken for a medical reason, and what we care about most is being covered for an unrelated emergency while away and, above all, being able to get him home to the UK if anything happened.

Would really value hearing:

1. What insurer, plan or membership you used, and whether it actually paid out or helped when needed

2. How you handled repatriation cover specifically

3. Any tips for flying and managing tube feeds and equipment

Thank you, this community's experience would mean a lot.

After 26 years, I was finally fired from my job as a 'financial bodyguard.' And I couldn’t be happier.

My daughter Noga has severe dyscalculia. For most of her life, buying a simple snack felt like sending her into a cognitive minefield. Her solution? Hoarding coins in a ridiculously heavy wallet, just so she’d never have to calculate change at the till.

After a misunderstanding at a shop led to a complete panic attack—because the cashier didn't understand why Noga was staring blankly at a calculator—I realized something important: traditional calculators are terrible tools for dyscalculia.

Since I'm a developer, I decided to stop fighting her disability and change the tool instead. I built a completely visual app for her that bypasses mental math entirely. It visually shows her exactly what physical cash to hand over and what change to look for. The tech does the heavy lifting in the background.

Today, the bodyguard shield is down. She navigates the pharmacy alone and even treats me to coffee.

Have any other parents here tried moving away from traditional math tutoring and relying purely on visual workarounds for everyday cash purchases? I’d love to hear your experiences!

 

You think this can never happen to you.

Every parent's worst nightmare has happened to my family.

My 9‑year‑old daughter's best friend lives one block up the street from us. They have been friends since birth and grown up together since it's the son of my best friend of 30 years.

They have a sleepover once a week.

On Friday night she was invited for a sleepover.

She packed a bag and walked up the street as she normally does.

She called me before bed to say goodnight.

I got an update from the parents that she was eating lots of breakfast in the morning, and told them to send them down to my house when they leave for the wedding they had to attend later that afternoon.

At around 1:30 p.m. I got a phone call from a social worker at Royal Columbian Hospital saying she’d been hit by a car and was in critical condition. They told me to get there now.

My heart dropped; I didn’t know what to expect.

That drive seemed like the longest drive of my life. My friend and her two daughters were staying at my house at the time and I was with my part‑time boyfriend, who drove me there. I left my son at home with my friend, as I had no idea what to expect.

My bf dropped me off at emergency and he went to park the car. I walked in alone and just ran through admitting to trauma and said my daughter got hit by a car.

They told me to stand right there and they would get the social worker.

While I was waiting, the first person I saw was the dad () of the friend she was with. My friend and he had broken up years ago so I hadn’t seen him in a long time. He was sobbing and hugged me.

They put us in this room to wait for the doctor to talk to us.

At this point it didn’t even seem real.

This old lady outside the door said she had put prayers out for our children at her church. Then she asked if she could say a prayer so I said sure and we all just sat in this room and prayed. Max had shown up at this point. So it was my bf the dad and I

They told the dad he could go see his son. So he left. Then he came back and the doctor came in.

He started off with her friend injuries.

Basically his leg was super mangled, broken bones and fractured arm and leg, nerve damage, and he needed surgery ASAP, but he was conscious and talking.

Then they switched over to my daughter . I still hadn’t been allowed to see her at this point so I knew it wasn’t going to be good.

They said she was stabilized for now, but she’d hit her head with no helmet on quite significantly. She was not conscious, they didn’t know if her spine was broken, she was on a breathing tube, and she needed to be transferred to Children’s Hospital immediately.

They kept asking me for her medical card through all of this because they had no info on her. The kids came as Jane Doe, and the only reason they were able to tie her to me was because her friend was awake and could identify her.

They asked me if she was pregnant at one point…. I’m like, she’s 9. And then that’s when I realized they had no idea about anything. So I gave them my son’s info by mistake at first. And they came back saying that number was for a 7‑year‑old boy. So they still didn’t have info because I had given Hudson’s. Finally I got the correct health number to them and then they finally said I could go and see her.

I went into this huge room. It must be the trauma room or something. I think there was a patient at the very far end of the room, then her friend in the middle and my kid to the far left. Like, this is a huge room. They have those privacy stands that don’t block anything. But I just remember the room being massive.

It was super bright and it was chaos. Paramedics, doctors, nurses, first responders, surgeons, social workers — just a million people in this room running around.

I walked up to my kid and while I was seeing her I could just hear her friend screaming in pain from across the room. The paramedics were the ones working on her and stabilizing her. She had a tube down her throat and a neck brace on. Black and blue bruising and bandages were everywhere. There was a pad under her head, like those puppy pee pad square pads. And it was just soaked in blood.

I sat beside her with all this chaos going on around me and it took forever for the paramedics to get her ready for transport. I said I’m riding in the ambulance and told bf to meet me at Children’s and take my car. So he left.

While we were getting wheeled out of there, we kinda got stopped. And this head guy yelled at everyone in that room, “Everyone shut up and listen right now!!!” The chaos stopped and about 30 people were all quiet and listening. The person continued to shout, “We have a car crash coming in right now which consists of child badly injured, mom injured and dad is deceased.”

So as soon as we were leaving the room to get in the ambulance, they were scrambling to deal with this trauma that was coming in hot right after us. I remember thinking, I guess it could be worse…

They put her in the back and I wasn’t allowed back there. I had to sit up front with the driver and two people in the back with her basically keeping her breathing pump going, etc. They had to move her so carefully because they had no idea about the spinal cord.

So I sat up front with the buddy who was driving. We left and as we pulled out the driver started driving and then goes, “Is that a median?” I’m so blind I’m like, I’m not sure. So he keeps driving as we get closer. I tell him, “YES THAT’S A MEDIAN.” and he’s like, “Oh shit,” and then tries to steer away from it but still hits it. And we go offroading for a bit and the guys in the back are yelling “WHOA!!! Careful.”

So in my head I’m like great, we probably killed her just getting out of the parking lot.

That was my first time riding in an ambulance when they are really ripping. He kept driving in the oncoming traffic lane weaving in and out.

He taught me about trauma hospitals and said only VGH, Royal Columbian, and Abbotsford are the only three hospitals that treat this level of trauma. And then went on about how he basically transports all of Surrey to Royal Columbian all the time.

Before we pulled up to Children’s the driver warned me that there’s a trauma waiting for us in there and it would be overwhelming.

So they unloaded her and I had a smoke. I took a deep breath and headed through the doors…

About 40 people were waiting all masked and gowned up. We went into another big room, but it was just her in this room and all those people were for her only.

They laid her under this light to do a full checkover.

It was silent and one person was in charge telling who could talk.

The paramedic started talking. He read off all of these numbers and stats that I couldn’t even comprehend, and then told them that somebody did CPR on her on site and that she was thrown quite far from the car. She also smashed into the windshield and all of this without a helmet. They said no helmets on site.

(They were wearing helmets. They just got flung off when they got hit, but this is what I was told initially — that there were no helmets — and I was like, what the fuck.)

They sat me in a chair while all this was happening with a warm blanket. I just watched and listened in disbelief.

I’m basically holding my breath as they check her over. After he was done his announcement, the person in charge then got some of the doctors to start the check. As they went they were yelling back what they found.

I’m holding my breath hoping that this isn’t where we’re going to find out she’s a quadriplegic or just a vegetable. They started with the head, which was a time of shattered glass in it. They checked her eyes and they dilated. That was my first breath of good news. Then I held it again as they were going over all lacerations that needed plastic surgery to help close up, and it was only on her hand and hip (and head of course). That was my second breath. They got her arms to move when they put pressure on them. Next breath.

And finally the legs. They couldn’t get any movement out of them. They were trying. Next thing you know they were stabbing her feet with full force over and over and finally there was a tiny movement. I was like, OMG, thank God.

So then they wheeled her off. I went into the hallway and the cops wanted to talk to me. They put me in a room and told me they couldn’t tell me anything but that this hits home for them.

I was like, that was useless.

We got admitted to the PICU right away. And honestly I don’t remember the first few days in there.

I know the neurosurgeon said it’s a severe head injury; we will know more when we get the MRI, but as for right now they need to relieve the swelling. If this doesn’t work, we may need to look at more invasive surgery in the brain and take off a piece of the skull, but we’re not there yet. Let’s start with the bolt. The bolt is what they call the hole in her head to just let the brain fluid drain out. So they cut a hole in her head to release the pressure and let it drain. And I think they had her on ketamine, morphine and fentanyl. She was on heavy, heavy ketamine for the first week and a half.

So we had to wait until she was stable enough to get the MRI and get X‑rays.

So now I can’t remember what came first — the MRI or taking the breathing tube out — but it all happened roughly around the same time.

So about five days into it, they said her breathing was stronger than the machine and they wanted to take it out. If you leave it in too long, it’s super damaging to the body. So they wanted to get it out as soon as possible.

That was one of the scariest things I’ve ever watched.

They took it out and she was gasping for air and her breathing sounded like it was on an amplifier — the loudest gurgle noises I’ve ever heard. I’ve never actually heard anything like it before. I thought it was a fake sound. They told me it was her breathing. And we all watched her twitch trying to get air. Her heart rate sat at 240 for almost two hours after. I just remember the vitals on the big screen flashing red nonstop.

They had to suction all her thick secretions in her throat. She didn’t know how to cough, so to clear her throat they would have to violently shake her chest while the other person suctions.

That went on for weeks and weeks because the breathing tube had of course given her aspirated pneumonia.

Then she got a staff infection so she was on vancomycin.

She had a couple blood transfusions.

For that week and a half I didn’t know if she was going to make it. My ex husband told everyone she was doing great. But realistically, the odds weren’t in her favor to overcome all that just to get to the stable point.

And then she was finally stable enough for an MRI and X‑rays.

Wow this is a lot to write out. I’m only halfway into week two at the hospital. And I’ve been here for two months.

I remember feeling so nervous to get the results because I knew it wasn’t going to be good. And once we officially knew, all the hope that maybe it’s not as bad as we think gets taken away.

The MRI came back and every part of her brain is damaged. There’s grey matter everywhere. Lots of shearing which means dead brain and tons of internal bleeding. The only thing that wasn’t damaged was her brain stem. The brain stem controls the basics, like the ability to breathe or heal a wound— that type of thing. But everything else is damaged. That being said, they still can’t give us an answer of what her outcome will be because the brain is so unknown and the only thing they say is she is going to have to show us what she can do.

There’s also a ton of fluid in her spine and we were going to have to wait to see if that means impairment of using her legs.

But miraculously she didn’t have a single broken bone or fracture. That’s when they finally removed the neck brace and could start moving her so she didn’t get bedsores. I think around the same time they finally put a feeding tube in through her nose.

Her legs have lost all muscle; they are toothpicks.

She has to wear foot braces so that her ankles don’t lock.

Then they started bringing her off the ketamine.

Her brain was misfiring so much that she was stuck in this fight‑or‑flight mode called dystonia.

This is when her eyes are open super wide with the most scared look and super dilated, and she can curl toward her body into a position that is so messed up and every muscle in her body is so stiff and she sweats nonstop and her heart rate goes to 200. That gets off by any little irritant.

While we are shoving a suction down her throat every second because she doesn’t know how to cough, and a feeding tube in her nose, she’s constantly irritated, so this went on for about four weeks, and if you don’t break the cycle, the brain will rewire itself to thinking that this is normal.

What happens when she’s in that state is she starts tearing apart all of her muscles and then her blood starts getting high enzymes and then her kidneys shut down and we have to do dialysis.

So now we have her super medicated.

I remember at one point I asked the doctors, “Is this what awake is for her?” and they told me to try to not look at this as awake.

Finally the episodes weren’t as severe anymore and they moved us out of ICU after being there for a month. She had learned to cough and her heart rate was finally not spiking at these crazy numbers.

Her last big episode was her birthday on begging of june

So now we are up on the 7th floor. That’s where they try and get her strong enough for rehab — trying to get all the medication just right, etc.

They say after a brain injury you’re supposed to stimulate it right away. The sooner the better. The cases where people are in comas for long periods of time have way worse outcomes.

It’s now been over a month and we’re still not able to stimulate the brain and get it going because we have to heavily sedate her because of the dystonia.

One day I looked over at her and she was making a sad face. I was sooooooo happy. This was the first sign of consciousness. Very, very low level. But I’ll take it. This means she can cry and has tears.

But what this also did is open up a whole new can of worms to figure out and deal with. She cried for a week straight. I don’t know if it’s emotional or pain. But she can’t tell me what it is. She has no control of any motor skill. We scanned her whole body over and over again and never found out what was bugging her.

I was convinced it was the feeding tube in her face, which eventually I fought hard and got her surgery booked to get it moved into her stomach.

She had that surgery and everything went well. Had to put her under general anesthetic and then basically stab a hole in her tummy for the tube to come out. The tube is a lot bigger than I thought it would be. Then the recovery room where we have to wake her up every 15 minutes for six hours straight — ugh. But I’m getting ahead of myself.

We could never locate the pain. It was frustrating. Then I played a voice note from her best friend and she smiled.

That was her first smile. So that tells us there’s memory there. She loves it when friends come to visit.

She laughs at me when I tell her I have a fat ass.

But I would say a joke and get reaction time was super delayed. Not sure if she can see, but she can hear and understand everything that’s going on and seems to know who everyone is.

Now we’re still around the same spot. A lot more smiling, not as delayed reaction. Still can’t communicate as she can’t move anything voluntarily or speak.

She had to get turned in the bed every two hours because of bedsores. We have to stuff her in a sling and make her sit in a wheelchair four times a day.

We have to see if she can track or recognize anything like grab the ball or look at the cup, which she can’t really do.

Still haven’t medicated for the dystonia and now need meds to pop more consciousness into her.

They want us to start planning for home. So I will have to get lifts and wheelchair stuff built in my home. I’ll have to get a car that has a car seat that can support holding her head up.

I have to have a 24‑hour care aide live in.

And no one can tell me how far she will come back or if this is it.

I’m starting to realize that my daughter I had is gone. And that is a pain that I can’t describe. Whatever this new version of her is, I’m here to love and support it. I don’t even get the chance to mourn my daughter. And she was amazing.

Every day I have to get up and do rehab with her and OT, the PT, the speech pathologist. Then I have to carry her in a chair and sling three times a day. Read to her. Keep her spirits up. Watch her vitals. Change her feed bags. Watch her temperature.

As well as try to keep a normal life for my son.

The hard part about this is you watch everyone fall apart. My mom bawling on the floor outside my room.

My son hitting himself and hurting himself and this weird stuff.

My ex going into denial.

So not only do I lose my daughter, I watch my entire family fall apart.

I can’t do my job. I can only manage my long‑term clients. I gave away almost 30 contracts because the last thing I can do is have any patience for the issues I have to deal with. But I need to work or I can’t afford to live so I’m just holding onto the bare minimum and gave away all my income. I just can’t do it.

Nor do I have the time. My life consists of parenting two completely traumatized children, living in a hospital during rehab with one daughter all day long every single day for the next four months: not being able to be home or do anything at my house, not being able to work, not being able to have one second where I can just sit down and not have anxiety riddled in my brain because when I have a quiet time in my mind, all I do is miss her

And all social media has to say is negative things about the kids crossing a crosswalk when ot was to late and saying I should learn my lesson.
This could happen to anyone, who are these people that say shitty things when a child’s life gets taken.
This is my first post about this and I’m nervous to leave it. But I need support so bad. Not to be trolled

My son has been on an NG tube for nearly 2 years (since birth), he is now scheduled to get a gastrostomy in the coming months, so I am starting to think ahead of what managing this new type of feeding will look like.

We have many problems with the NG (retching/vomiting it up all the time), which is why we’re finally moving to G-tube. But other than that, the actual management of setting up the feed outside home itself is pretty easy for us now, take our flush bottle, a few syringes, giving sets, feed bottles, and pump of course. I like to get us out of the house so it’s important to me to have a manageable routine when it comes to the feeds.

It is likely that he will have a mic-key device (after an initial 6 weeks with a different temporary primary device). My uncertainty is on how to manage the connection tube when out of the house for hours or on day trips, as I understand it needs cleaned immediately after feeds. How do you go about this when out in public, without access to your kitchen basically?

Open to hearing any other advice or tips too ahead of making the decision on his device.

My son wants to hike- in his words “climb a mountain!”

We camp/travel to spots he can do small attempts, but since he’s 8, and 60lbs- we can’t carry him up on big hikes anymore. The carriers don’t fit him, and at 60lbs with both adults having to pack- we’ve just reached the point of “what do we do here?”

We always encourage him to try, to find his own limits, to seek his adventures in a way that works for him. He’s great at adapting, but at the age where he feels he can’t do this or that, or the lack of stability is now scary.

He does weekly PT and wears an AFO on his left leg, but with travel, we’ve missed a few weeks this summer so I haven’t had a chance to bring it up with his therapist. She’s worked with him since he was 7 months old, so she pushes him and has become a huge part of his ability to adapt and think around the struggle.

I wish exoskeletons were available/affordable for kids with disabilities in this predicament.

Sometimes it’s hard to not think -Who would he be/what would he do if he wasn’t burdened with half a body that doesn’t work?

We celebrate his attempts, struggles, and will to keep at it, but It’s heartbreaking. Seeing all of the things he absolutely wants to do, and is now able to recognize his differences between himself and other kids.

We do have him signed up for golf camp, which he’s excited about- 1. it’s a sport and 2. he doesn’t have to keep up with his peers like basketball and such.

But I want my child to climb mountains if he wants to.
I want to support him, get him the correct equipment, learn hiking techniques, but I’m not in his body. I don’t suffer from lack of stamina, exhaustion/fatigue, muscle cramps and spasms, etc. so I feel out of my depth here.