r/specialneedsparenting

My child is 8, about to go into third grade. I personally believe he needs to be retained because he is barely progressing towards any of his goals this year. Idk how they are passing him through, and his dad doesn’t agree that he needs to redo second grade. It has been the shittiest year imaginable. His teacher had a stillborn full term baby so he had a terrible a sub for 3 months , then his yea her comes back and you know she’s checked out. I finally got him evaluated by a psychologist and he has real diagnosis that I need support from the school with and it is downright DEPRESSING the lack of interest or support I have gotten. It’s the end of the school year so idk how it’s going to go getting accommodations set up. He is moving from primary to elementary next year and everything just feels so overwhelming. My main thing is it just feels like no one really cares about helping him. He is very high functioning adhd/asd and well behaved but has learning difficulties with writing and spelling and working memory. He needs extra support with completing work and getting the most out of his education. It makes me sick that im forced to send my child to school but the school doesn’t seem interested in helping him succeed even when I have proof that he needs help 😭

I [32m] and my wife [25f] have had an awful past few weeks. Our daughter is in the NICU, due to a myriad of symptoms that were completely missed by our OB before birth. Essentially she has CHARGE.

Genetic testing was done, all the ultrasounds happened, we did everything expecting parents are supposed to do. Neither of us drink, smoke, or do drugs. We eat relatively healthy, exercise, and work in safe environments. This came as a complete surprise to everyone. Doctors can't tell us anything as to how disabled she is going to be, which leads me to believe it's going to be bad. What was supposed to be the best week of our life turned into the worst.

I've had dark thoughts, I've wished she wouldn't live, I've wished we could've had the option of abortion. It didn't help when the doctor told me how great medicine has gotten because she would've died 30 years ago and I got angry wishing it would've happened.

My wife has already expressed wanting more kids but I don't, I can't experience this again. None of my family understands, my parents came to visit and they were so excited to see their grand daughter, surprised to see her in the NICU. They don't understand why I'm sad, upset and angry all the time They won't have to potentially take care of a child with the mental status of a 2 year old for the rest of their life. She may never walk, talk, see, or hear. The most I might get is some moaning from her.

Am I an awful person for feeling this way? I feel awful and cry myself to sleep every night looking for a way to make this situation better. I'm afraid to express how I really feel to anyone around me for fear of them calling me a monster.

I do well financially so I don't receive any support from the government (USA). I've already tried applying for some sort of help, I called social security and pretty much got told to pound sand with my income. I've had to pull money from my 401k to prepare for not being able to work for the next 6 months, while I'm here to support my wife. I have great health insurance luckily. I've also been told medicaid will kick in after like 30 days in the NICU. But should I expect to hit my OOP max for my health insurance every year from now on? She's going to need so many surgeries throughout her childhood. But if she has the mental status of a 2 year old THEN WHAT'S THE FUCKING POINT!?!? ALL THIS WASTED EMOTIONAL PAIN, STRESS, MONEY, AND TIME JUST TO HAVE A MOANING VEGETABLE IN MY HOME.

I know I'm going to get downvoted, but this is how I feel 2 weeks into being the parent of a child with special needs. I don't have hope, and I don't see a future of joy involving her.

I love the home that I live in. I have a beautiful home on 5 acres of mountainous terrain that I will probably have to leave to better accommodate my daughter. My home is not wheelchair friendly and it can't be made to be, the hallways are too narrow.

I love my wife, we've been married for nearly 4 years and I'm scared that our daughter will destroy our marriage. I'm not willing to have any more children, and she wants more.

I'm sorry this post isn't better organized I'm kind of spilling my emotions on the screen right now. I tried to talk to the social worker at the hospital but it didn't end well after they told me my child was a "gift from God"...

Tldr: my newborn is in the NICU diagnosed with CHARGE and I feel like a terrible person

Edit: Thank you for everything everyone has said, as most of you know, in the moment it feels like nobody else understands you. It's good to know there are others who understand the anger, fear, and frustration. Wife and I have an appointment scheduled with a couples counselor through the hospital. Some major therapy will definitely be needed for me... I feel like I'm in such a dark place.

My kid, 10, has to go under for dental work in 3 weeks. I have gone to 3 pediatric dentists and 1 holistic dentist (who was able to do some treatment). The issues were with primary molars so I was hoping with good care we could just wait them out, which the dentists all said "might work." But, it can't wait any more. Last month a tooth became infected and he had to take antibiotics. Unfortunately it's not loose yet, and now a back permanent tooth has some decay as well, and if it's not taken care of it will just get worse.

I'm having SUCH a hard with this. I know GA is generally safe now, and his pediatrician sent me to the same place she sent her kid to. But, he's 24-7 supervision and I never leave his side. And to turn him over to people I don't personally know and trust his life to them... it's just eating me up with stress. I can't sleep or eat. I'm worried something will go wrong and he'll be harmed.

And I'm SO worried about the trauma. This kid is VERY easily upset, and if he's traumatized by something, (even things that would not upset others), he cannot let it go. I mean... a couple months back he got simple a virus from his cousins, it made him throw up a couple times on one evening, (no other symptoms), and then he wouldn't eat for almost a week. The doc was saying if he didn't eat soon we'd need to take him to the hospital for an NG tube. He was just afraid to eat. Thankfully he started taking food and is back to eating... but that's how he reacts. And he has an ID and he won't understand why I took him there and let people put a mask on his face to put him to sleep and then do stuff to his mouth while he was out. And I'm also afraid the recovery will be brutal for him... he needs a tooth extracted and there will be a hole and blood and pain... and he doesn't understand. He's combative and tries to elope when he panics.

I have of course informed them of all of this and they are working with me on a safety plan. I'm posting because I'm afraid and I don't know what to do with these emotions and all the thoughts and worse case scenarios ruminating through my head, other than to put them out out into the universe. I would not be moving forward if it wasn't truly necessary. Those of you have had kids that have to have surgeries (which I know some of you out there have to deal with stuff like this a lot), how do you deal with it? I am putting on my best happy face, hiding my anxiety as much as I can, because I don't want my stress to negatively affect him. But how do I get through the next 3 weeks and how do I hand him over to them?

Please... all you wonderfully helpful people... please no "just stop worrying, it's safe and fine" responses. I beg of you, it's not helpful. Some of my anxiety is because I have personally had a bad experience with anesthesia, and I know things can go wrong. I am hoping that part goes fine, but even so I know my kid and knowing how hard recovery will be is not "worst case" thinking or paranoia... he was dysregulated for over a month after a simple blood draw, and we used anti-anxiety meds to get through that. I know we can get through it, but I'm having a hard looking at his sweet face and going about our daily activities knowing what's in store for him.

Sigh. My wife parked in a handicap space and left the kids in the car with my 12 year old, with the van doors open, while she ran inside to check on the place for accessibility. My daughter walks with difficulty and an abnormal gait. She is 9 but developmentally, other than gross motor, closer to 1.

An older couple parked in the handicap spot next to us and got out and remarked to my 12 year old, “what’s their disability? She doesn’t look disabled.” He just stared at them and didn’t respond.

This isn’t the first instance of ignorance or discrimination we’ve faced, but I wish my son hadn’t faced it on his own. He was confused but otherwise seemed okay and we talked about it.

Not the biggest deal I guess, but still disappointing.

My 11 year old is cognitively, emotionally and mentally developmentally delayed. His last testing showed he functions between 3 and 6 years old depending on what the task is.

Our current issue is hygiene, specifically changing clothes. It's not a specific item or fabric or anything we can pinpoint but he will NOT change his clothes. He will put on the same outfit he wore the day before unless we hide it then he will happily pick a new outfit.

Roll in the grass? Play in the mud? Spill food on it? Have a bathroom accident? None of it matters and he will put on the same underwear, same shirt, same pants, same socks. We do *not* care what he wears. He picks his own clothes when we shop, he picks his own outfit. We've tried different fabrics, different detergents, different methods with help from pediatrician, psychiatrist, his therapist for speech, occupational, and counseling. This isn't new, it's been this way for years.

The most foolproof method we have is a box under our bed and after the bedtime fight (the usual im not tired I need a drink, I gotta pee from him and his brother) we we grab his dirty clothes and put them in there. He'll look for his dirty clothes for about 20 minutes then pick a new outfit without too much fuss other than him and brother arguing over who's shirt is whose.

Does anyone have any ideas we could try? I don't want to go into what we have tried. I'll try anything again. I need to get this dirty clothes box out of my room but it's the only place we have that he hasn't found it and no, putting the clothes outside is not an option and neither is daily washing because we need to use a laundry mat.

I have wondered for the past few years how exactly we’d get emergency treatment given I have no way to get our son in to hospital and either keep him there or keep him safe. For context, George has severe learning difficulties, is 17, 6’4” and 100kg. He is taller and stronger than me, he tries to runs off, has PICA (eats non food items all the time) and hates hospitals. And because of all this I have no way to get him emergency care and when I have asked doctors what would happen the answer was always “no idea, but they’ll find a way”. Well, I now have an answer.

The other night George swallowed one of his mother’s AirPods, we called 111 (UK non emergency advice line) and they said for most 17 year olds in this situation they need to go straight to A&E but due to George’s situation they would send paramedics to work it out.

The paramedics came, assessed him and began to formulate the plan. This involved a consultant who sits bridging the gap between paramedics and hospital doctors. He determined that we could wait and see if it passes naturally but that they would need a plan if George shows any sign of pain or discomfort.

The plan was an air ambulance, sedation in the field, an emptied lockable hospital room, significant additional staffing and transport home.

Fortunately the AirPod passed at 7am the next morning so we were ok, but I am relieved to now know that if there is an emergency there is help, that they will take his situation fully into account.

Oh, and after cleaning and spending 24 hours sealed in a container next to baking soda I can report the AirPod still works perfectly!!

Small vent, just had to pick my child up from PreK. Great morning, great drop off, then an hour in to work I get the call. Focal seizure, now she has a horrible migraine. I just hate this for my little kid. Thank God the staff at school are responsive and thank God my workplace is accommodating (I've worked at a place that wasn't, and that was 100 times worse), but watching my baby be sad and confused and in pain is just heartbreaking.

I am so lucky that some days she can just be a happy kid, going to a school program and making friends and making progress. Days like today just put us all in a funk. She's missing her session with her BHT and special instruction, she's disoriented and miserable and doesn't feel good, I'm missing hours on my paycheck, the routine is thrown off and my anxiety is high.

I can accommodate and predict so many things for her, behaviors and cognitive delays and motor skills, but the seizures are still so hard.

We’ve got a special needs 2 year old, he has major social issues and his therapists have said they haven’t seen the kind of issues socially we’re expressing to them. They asked if we could have him around a child for them to see how the interaction goes at our house. My wife asked her best friend if she would bring her daughter, who he’s most commonly around over. The friends response was basically no, as well as I don’t want them to be around each other anymore so that she doesn’t have to play carefully and can always be herself and not adjust her behavior for other people. The only thing he does around other kids is completely shut down as if a power button has been pressed. He sits still and does nothing and will cry if physically touched by another kid or if a kid cries that’s it. In my mind friendship needs to be over.

Hi all!

Curious how those of you who chose to have more children after having a child with special needs coped with the uncertainty of all the what ifs in pregnancy.

My newly 3 year old son has a rare de novo genetic disorder that causes delays/intellectual disability. He is incredible and doing so well, and also I worry about his future, am busy with all this therapies, etc. We didn’t know anything was going on with him until end of my third trimester.

Now here I am entering the third trimester of a very wanted pregnancy, but I’m wracked with anxiety about raising two special needs kiddos. We ended up doing a microarray and whole genome sequencing on this pregnancy to have all possible information, all was clear, but the fear is still there. Obviously, we will love his sister regardless of who she is, but I’m looking for ways to recenter myself and try to enjoy and connect to this baby in the last phase of my pregnancy.

Curious if others went through similar feelings and if anything helped you relax and get excited about your baby? I did loads of therapy after having my son and feel so much better about his diagnosis/the uncertainty with it, but clearly not handling the uncertainty of this pregnancy well.

Thank you in advance!

My nephew isn’t walking. He turned two a few weeks ago. His doctor doesn’t seem concerned.

Has anyone had a 2 year old that didn’t walk yet? My brother and his wife are growing more and more concerned, but his doctor doesn’t seem to be taking their concern seriously. He keeps pushing them off and telling them to wait. I’m not sure why they’re not pushing harder.

I have a few reasons to believe that mild cerebral palsy may be at play. From what my SIL tells me, the doctor isn’t being thorough. I think they’re missing something.

My nephews eyes go two different ways, his muscles seem stiff, I think something is off. I am concerned.

Does anyone have any experience with toddlers and/or babies with cerebral palsy, and can you tell me what symptoms showed up early on?

Growing up, exploring woods or rivers was one of the most magical parts of childhood. I want to expose my son as much as possible, but since he can't sit or stand, his exposure has been limited. He's three.

I'm curious for people's personal experiences or ideas- I've thought of dressing him in thick clothing so he can crawl, which isn't ideal in summer, and of course just taking him for an easy hike in his stroller. Just curious if there are obvious things I haven't thought of!

My son is also at an under 1 year old level developmentally, so I'm not sure how much he WANTS to do these things. It's so difficult to figure out the balance of exposure vs. payoff. If we drive an hour for an outdoor experience that he's not interested in, it's torture rather than enriching, but he MIGHT be interested, so I feel like a lazy mom for not doing it!

I know no one can know what is right for us, just curious about what you've done :)

My boyfriend’s brother has special needs and usually needs help getting ready in the morning. My boyfriend sleeps in an open upstairs space at his aunt’s house, and I’ve been staying over.

The past two times I’ve stayed, his brother has come into bed with me while I was asleep. The first time I woke up and he was sitting next to me touching my thigh and talking about wanting a girlfriend. I told my boyfriend, but he got upset with me. I said I felt weird and he took it the wrong way. I’m just a shy and awkward person so I felt weird because I wasn’t sure how to react.

It happened again the other day. I was asleep (had a little to drink before bed) I’m usually a light sleeper which is why I woke up last time. This time I didn’t wake up. I’m not sure how long he was laying down beside me. I feel like I might’ve thought it was my boyfriend next to me. My dog was growling and it slowly woke me up. He was again talking about wanting a girlfriend. I texted my boyfriend asking where he was and to come up but he took his time.

I don’t blame him at all and I know he doesn’t understand boundaries, but I do think clearer boundaries are needed around me being asleep and unaware. Or boundaries in the bed in general. He seems to only come get in bed with me when my boyfriend goes down stairs. I don’t sleep over often so it’s only been those last two times.
I also have PTSD from past SA, so waking up like that is very distressing for me. I hope I don’t sound mean or like I’m overreacting. I’m just uncomfortable being close to anyone. I wouldn’t want to wake up that way no matter who it was.

I’m looking for advice on how situations like this are usually handled respectfully. I do feel like it’s unsafe for him to lay by me while I’m asleep because I could kick him, assume it’s my boyfriend or my dog growling could’ve bit him and I was asleep and unaware.

Hopefully my boyfriend will understand. I tried being really nice about asking for the boundaries this time.

My wife and I have been trying to make our marriage work for several years now, but I've realised recently we're beating a dead horse at this point - things have gone from bad to toxic to borderline emotionally abusive, and there's no fixing it.

Our son can't walk or talk, and we have adapted our home significantly, plus is nearby to access a lot of vital resources.

I run my own accounting firm and have supported the 3 of us since he was born, but he's still way too much for a single parent (not necessarily at any one time, but the overall demands are way too high). I'm committed to being there for him regardless, this is purely about the marriage and not me trying to run away (am aware of the optics of a dad leaving a mother with a disabled kid, believe me).

If one of us moved out they'd have to stay local, and there are medical appointments and surgeries in the future where we'd both need to be there. Although I work full time, I still want as much time with him as possible. I can't see a situation where he moves or has to bounce between two houses being workable, so I think "nesting" is our best bet for the short-mid term (he stays put and we alternate between the family home and another shared location)

Has anyone here been through a divorce with a disabled kid? Or tried / seen nesting work? Honestly I have zero intention of dating / finding someone else, but obviously can't speak for my wife and I can see problems with it arising in the longer term.

My 10 month old has hypotonia, torticollis and feeding issues. He’s stayed sick regardless of whatever steroids we give him for the past six months with a “respiratory illness.” I put it in quotes bc I don’t know what’s going on. Pediatrician doesn’t wanna seem to do anything further any of it. Now, as of this past week, he has a double ear infection and they gave him an oral antibiotic. I guess because of his feeding issues he’s vomiting up the antibiotic. Now today he has a fever and he’s had two HUGE projectile vomit episodes. For the past week and a half, I’m not sure if it’s because he’s sick or what he’s had a significant decrease in feeds. He’s had ongoing weight issues. I talked to the Pediatrician’s nurse this morning (before I found out he threw up) and she said the Nurse Practitioner said “they’ll drop weight when they’re sick sometimes.” But what am I gonna do if he never stays well? What am I gonna do because he keeps vomiting up his medication? Just we let him decrease in feeds till he’s dehydrated and in an emergent situation?! His normal is 38oz a day and today he’s had 6oz. 🤷🏼‍♀️

Hi everyone

I am nearly 39 & have 2 autistic children (aged 15 & 12) both have needs but would be considered ‘high functioning’.

My nephew who is my husband’s half sisters son has profound autism and is non verbal.

I know I would cope (because I would have to) but that is not the life I would want for my family.

Has anyone else gone of to have a low functioning autistic child after having two that are high functioning? Or gone on to have a neurotypical 3rd child?

I am also autistic, as is my husband (high functioning) so I’m almost certain a 3rd would be autistic and because of my age I am worried it could result in being more severe.

I know there are tests like the harmony but they can’t detect high needs autism so looking for peoples experience.

We have a ~6 hour drive coming up and I’m trying to prepare as best as I can for my son. On our last trip, he got overstimulated by the car noise and seatbelt. We use a weighted blanket at home to help with this, but it’s not practical for a car seat as it keeps sliding off. So one thing I'm looking for is alternative suggestions / ideas for travel-friendly sensory tools.

I’m also worried about other issues I might be overlooking. For those who travel often with a sensory-sensitive child, what else is bound to come up besides the noise and seatbelt issues? I'm not too sure if other things might happen this time around, and would love to hear your must haves so I can be as prepared as possible. Thanks