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. 😭
You have to spend your 19th wedding anniversary 2+hrs away from your partner at another medical appointment.
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)
I’m gonna get straight to the point . My son (9yr) has high functioning autism and adhd, he is a social butterfly, kind and just like any other kid he has his bad moments. For the first 4 years of his like I was a married single parent. Husband started to get more involved but had little patience or understanding of how our son’s brain works. Him and my son go to drum lessons on Sundays , needles to say he came home infuriated that his son didn’t listen in class was not behaving and kept asking when they could go home. Among other things but what got me the most was the following and I quote : ‘I did not sign up for this, I was robbed of fatherhood, I’m
Not a father to this retarded thing’ ( while pointing at our son’s room . I was speechless and crying. How do you handle this?
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.
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 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.
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.
Hi everyone,
I am 36 years old and was recently diagnosed with POI (Primary Ovarian Insufficiency). I have three children. I originally agreed to genetic testing to see if my 18-year-old daughter might inherit this, so she could consider freezing her eggs.
However, after a stressful call with my doctor, I started researching and am now completely overwhelmed.
My youngest son (11) has an intellectual disability and Level 3 Autism. He does not have the typical facial features often described online for Fragile X. My middle son (16) also has autistic traits and a split profile (high verbal, lower performance). I myself have ADHD and anxiety. [1]
I just found out that being a Fragile X premutation carrier can cause POI in mothers and can expand into the full Fragile X mutation in sons, causing intellectual disabilities and autism. [1, 2, 3, 4]
How likely is it that my POI and my son’s disability are just a coincidence?
Has anyone else gone through this exact realization after a POI diagnosis?
Is it common for children with Fragile X not to have the typical facial features at a young age?
I’m currently in a lot of emotional distress and honestly terrified of what the genetic test might reveal. I would love to hear your experiences or insights. Thank you.
Good morning to all those on the court of public opinion. I typically don’t put my business out on the Internet. Hence, the reason for this throwaway account
However, my partner and I are at odds regarding his 12-year-old autistic daughter. I am looking for objective feedback that typically when you talk to friends or family they want to take your side. I am not looking to be in my own echo chamber, but to see if I’m actually in the wrong. This is a long one, so I appreciate in advance the time that you’ve taken to read this. To give a little context and backstory I am a 54-year-old female. I have one biological child and he is in his 20s and currently away at college . I have been with my partner, male 57 years old, for eight years and he has four biological children. Two adult girls with grandchildren, one adult son with a grandchild and then 12-year-old daughter who’s autistic. I have a great relationship with his middle two kids and their families (daughter and a son). The 12-year-old autistic daughter I am not as close with and have helped and caretaking however, we have struggled to make a connection. And it doesn’t help that we unfortunately have struggles with her mother, and they’re constantly back-and-forth in court. Unfortunately, the mother is not cooperative and is difficult to get along with, even though we’ve made every effort with her. And this is coming from us who we have exes over for the holidays to be with the kids. There’s much more ins and outs to this backstory however, I feel that this gives you a good summary.
The youngest autistic level is she verbal to a point, however, her behavior has been regressing over the years and she needs 24 hour care, at this point, she would never be able to be independent. We wonder if her mom is part of the cause and doesn’t do anything to help facilitate her growth. We say this because of things that have happened in the past where the mom just lets her do whatever she wants. So she has meltdowns when not getting her way. Sometimes they are bad and sometimes they are brief. In addition to the mom is very secretive about her home life and the courts have allowed it.
Now comes the part where I need objectivity of the court of public opinion. My partner is going back to court yet again to try and get her mother to cooperate and coparent. They have joint custody and the attorney that my partner has, has taken him down several rabbit holes that have not helped and if anything he has less parental rights now than he did when we first met eight years ago. This last one they have been working on for quite a while to take her before the court, for evidently hearing to show evidence that she has been dishonest and disobeying court orders. Now halfway through, we’re getting ready to go to court in a few weeks, and the attorney has now flipped the script and said that my partner should hold her in contempt of court and fight for custody. So my husband came to me and told me that him and his Attorney had talked and that they were going to not pursue the evidence hearing, but go to the contempt of court to get custody and what did I think. In the eight years that we have been together, I have stood by his side without question going through all the ups and downs, and the struggles that her mother has brought us and have stepped up to everything that has been needed to facilitate this relationship. I have struggled with my relationship with his youngest daughter because of the fact that we don’t see her very often. And when I do, she’s usually spending time doing stuff with her dad because he sees her so little. Which I encourage. However, that leaves very little room for me. Which I’ve come to terms with and OK with his relationship with her is more important.
So when he asked me about how I felt about getting custody of her, one of the questions that I had was, what does this look like? We are heading into retirement and what would that plan look like.
I have been a caregiver for somebody who has been disabled for most of my life so I know going into these things knowing to be successful you need a plan. My husband is furious with me because instead of me just saying, “we’ll figure it out” I was asking questions and he’s assuming that I don’t want her. I know as a caregiver before that these things need to be addressed because caregiving for somebody 24 seven is very difficult. Not to mention the fact that my husband doesn’t take care of his own health very well so taking care of somebody else’s needs I’m concerned about what that would look like. He’s a good dad and he loves his kids very much. However, he’s very protective of the 12 year-old and it seems as if there is no room for discussion. And if we can’t have discussions before she comes and lives with us, what would it be like when we’re in the thick of it. Right now in his eyes, I am a horrible person for asking these questions and not just stating we’ll figure it out.
Am I wrong in that, should I have only said we’ll figure it out?
Am I wrong in trying to ask those questions to have a plan going forward?
Am I wrong in wanting to discuss it? I felt that it was a big responsibility in wanting to make sure that we are up for the task. We’re not getting any younger and these are the things we have to think about as much as it seems that he doesn’t want to.
If you have read this far, I appreciate your time and any constructive feedback.
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.
i made a post on here sometime ago explaining my son (4) just does not sleep, which means i don’t sleep and i’m currently around 11 weeks pregnant. i’m trying to stay as stress free as possible since my pregnancy is high risk, but i don’t think it’s possible.
my son has developed a screaming/ kicking and hitting habitat since April so around 4-5 months everyone in my house has been getting broken sleep. i honestly might be losing my mind. he goes to bed at 8pm and takes melatonin, he wakes up at 12am-2am and takes more melatonin and then he wakes up at 4am. he then tries to go back to sleep at 6am and it is literal hell trying to keep him awake to change his patterns.
i’ve talked to the doctor about this and they suggest just upping his melatonin. it was 1, then 2, then 3.5, and now 5. throughout the night he takes 10ml of melatonin and its starting to not work anymore. the doctors suggested eeg, sleep study, and development mental doctors, but the problem is those appointments are next year. i need something to change now.
my boyfriend works 12 hour days, my brother has school at 7am and none of us are getting any sleep because he is so loud. when we go to appointments nurses go out of their way to tell us how loud he is. whatever we do, wherever we go he is screaming at the top of his lungs. it’s to the point i refuse to sit in a car with him until we figure something out because he’s giving me headaches and raising my blood pressure in a tiny space.
i think i’ve just come to realize i just can’t do this. we can’t live like this anymore. it’s only been 4 months, but it feels like torture. i’m becoming to resent him and i’m just mad at him all the time. please understand. i’m stuck in a house with him and he screams/kicks and hits all effing day.
they stopped therapy because of it, my nurse has quit because “he was too much to handle”, family stopped coming over, i lost all my friends, no one will watch him for me anymore, we live in a little house not much space
i might be losing my mind and the worst part is he’s asleep right now, but i know he’ll be awake in 3 hours and keep us awake.
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! ❤️
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
I have twins who are 5 yo. my daughter has autism level 1 but now that her speech has improved and she has potty trained this summer she blends in very well. she's really just a bit quirky which is great. Her brother however is non verbal, not ready for potty training at all and has some mobility issues. I have noticed for most of their lives that Isabella is welcome to attend any social gathering, club, vacation Bible school ect. Jack is consistently turned away from enrolling in anything. This summer I have tried very hard to get them in some activities such as camp, I've tried 3 different vacation Bible schools, a music program ect. I have volunteered to stay at these activities and help my son so he can attend and have all background checks but that has not changed the results. Jack has been told he cannot attend at all of them. We had thought we got him into a vacation Bible school this week and they promised to help with diapering but changed their minds at the last minute. Up until now I have been trying to only let Isabella attend things if her brother is welcome to also attend. I had felt it was sending the wrong message to her saying she deserves fun, friends and experiences when her brother doesn't because he's different. I'm concerned that he's not going to magically get better and he's never going to be welcomed anywhere. I cannot afford the huge cost to send him to a camp for disabled children. I've checked prices and it's around 2,000 a week for him to go which would never be in my budget. If I do allow her to attend alone going forward what should I be saying to my son? He will cry and be very upset. How can I let her know that he is her equal even when society does not agree? Or should I keep her home if he's not allowed to go?
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
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!
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.
My son has CP and 22 months old. His daycare told us that we need to hire someone to be his aide while he attends. We did hire someone but my brother told me we should be asking about ada compliance and if what they’re requiring is legal.
Any ideas?
My son just started Keppra, he is strictly gtube ged and gets half a tablet (for now, then will move up to 1 tablet) twice a day. Im trying to find the best way to dissolve it to put it in his gtube, any hacks?