/r/SpecialNeedsChildren
A community dedicated to sharing and discussing issues related to parenting special needs children.
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/r/SpecialNeedsChildren
My twins have muscular dystrophy and we met with a specialist for the first time a couple months ago. She was very knowledgeable but did not have good bedside manner to say the least. She said some inappropriate things that made me very uncomfortable. My sons are 3 and in preschool now. The appointment we had was just before they would be starting school and she seemed shocked by the fact that we were sending them to school and even said, "you're going to attempt preschool?" So far my boys have been doing wonderfully in school according to their teacher and therapists so it makes me angry that she feels my children can't go to school because of their disease.
I'm also pregnant with our 3rd child. We knew the risks of another baby having muscular dystrophy but after speaking with genetic counselors, we decided we'd try for a child since we always wanted another one. I told her I was pregnant and she was very concerned. She told me she wouldn't want "another one" referring to another child with MD. I had genetic testing done on the baby and she isn't going to have the disease but even if she did, it is my decision whether or not to have the baby and my children's doctor shouldn't make me feel bad for it.
Something else that offput me was the obvious concern and shock she emitted everytime we told her my sons couldn't do something that they should be able to do for their age. She'd audibly gasp and say "oh no". I left that appointment and cried in my car. We have the option of seeing another specialist about an hour away but I'm willing to travel any amount of time to find a suitable doctor for my children.
Am I just being sensitive?
Hi, I have an eight-year-old daughter who is struggling with obesity. Being so young, she can’t handle a strict diet, and I’m unsure what to do.
Could someone please share some safe and practical advice to help with her weight? Additionally, if there are any natural remedies or herbs that are safe and have no side effects, I’d be very grateful to hear about them.
Thank you so much!
I'm trying to find meetup groups in Cardiff, both for parents of kids with disabilities, and for kids with disabilities - I found Thrive, but it seems like that's very inactive, so would love to get a lead on any other groups, or possibly see if there's any interest in starting one up.
My family and I live in Sumter, South Carolina. We have a 20 year old son. I am trying to find some friends for him, as well as activities for socializing. When he was younger he went to the boys and girls club for socialization but It’s been challenging now with age groups because he is physically older and mentally, much younger.
A little about him. We adopted him at 14 and that is around where his mental age is now. He has diagnosis of autism, mild intellectual disability and ADHD. He is a kind, well mannered kid. He is VERY talkative and enjoys music and has a real passion for cars. Any guidance would be greatly appreciated.
Thanks
I'm not sure what I'm looking for with this post. I'm usually a really positive person and I've come a very long way with regards to accepting my child's disabilities, but lately I'm feeling overwhelmed.
She's also come so much further with her development than any doctor expected. we were essentially told she wouldn't be doing much, possibly wouldn't even be able to sit, severely disabled in all areas. While she doesn't walk or talk, she crawls, is super active is super sociable, always happy, wonderful. She's amazing and I love her to bits. Lately I'm just having a hard time with how far she is in her development, how different she acts (suspected autism and/or intellectual disability, she's gotten loud, screechy, always so excited and more energy than any other kid, even if physically she's so delayed, which I'm still thankful for because she can express herself but it's so different than other kids), and how different our lives have been compared to literally every other person with kids around us, except for parents I've met through support groups for medical parents. Like my daughter just had her 4th surgery in her 2.5 years of life, and we're already having to think about a potential 5th and 6th.
Her disabilities/special needs are more and more visible and it's starting to hurt again. She's in a specialized daycare and while her educator does her best to include her, sometimes my daughter doesn't seem to get the games or care or be able to participate. As someone who was bullied and excluded and who still feels so self conscious about participating in any social activities, this hurts so much. I don't really have any close friends, let alone people who understand what this life is like. I'm lonely and scared my daughter will grow up just as alone, or worse. This is not the life I imagined and I feel guilty for giving her this difficult life she will have to deal with forever.
I'm going through my own medical things at the moment and I'm spiraling thinking of what life will possibly look like for her when I'm not around. We don't have a huge family, no other kids, and all of our friendships with other who have (typical) children seemed to have phased out when we discovered ours would be disabled (like we're never invited anywhere, and people are always busy when we invite them, but we see them hanging out with other friends). No one checks on us, no matter how much I try to be there for them.
Again, so thankful with how far she's come but feeling so overwhelmed lately.
How do you cope when you're going through these phases? I'm usually the positive one reminding other parents that disabilities are okay, but I'm losing my mind.
I dont know why im writing this now, but i just wanna share our story ... my daughter is almost 3 years old, she was born healthy but unfortunately when she was just 8 months old, she got a herpes simplex encephalitis that caused a permanent brain damage and triggered NMDA receptors (auto immune desease), she spent almost 6 months between life and death in an unconscious state ... she woke up then like a new born , lost all her mobility ... fortunately we are living in Finland, the health care system here is good and free, we got all the support possible and today she is doing much better and beating the odds when it comes to progress , she is non verbal, still cant walk, refusing to eat ( special milk through a gastro tube to the stomach ), but her mobility is improving everyday now she can sit by herself , stand up with the help of a a standing frame , she is a my little warrior ! She got a very strong personnality ( thats something that i like ) ! The doctors are saying that she is showing some autistic behaviours but for when it comes to her future we are living in a big question mark !
I consider myself a lucky man because i have the best wife ever, we are both very positive and we are trying as much as we can to look at the glass as half full, we ve been blessed with a second daughter she is 6 months old now and is the most cute and easy baby i ever seen, she is all the time happy and smilling and most important sleeping well !
Talking about sleeping, thats our biggest issue with Julia my older daughter, its been a year now that she is sleeping few hours at night and then wake up and start screeming and crying for hours non stop, its the same almost everyday, she is giving us few small breaks for 2/3 days every now and then and its the same again or even worst, the only thing that can stop her from screaming and crying is the TV ( Ms Rachel program : its the only kids tv program that she like and accept ), i try not to put on the TV as much as i can cause i know its not a solution but soemtimes i give up and i feel bad ... but im working everyday from 9-5 and the lack of sleep is killing me ! We tried to change her sleeping routine, less naps during the day, melatonin .... but no result , its the same situation or even worse cause today she is stronger, with a stronger voice and personnality ... and im scared about the future
Hey! My husband has been offered a promotion. We’re currently in Ga. This promotion will take us to Dallas/Fort Worth area. We have 3 children ranging from 9-5. Our middle child is disabled, has many specialists she has to see weekly (physical therapist, neurosurgeon, urologist, orthopedist, ect). She currently is under a medical waiver called Katie Beckett in Georgia, for special needs children who do not qualify for medicaid because of income. I’d like to know if there are any Spina Bifida resources for children in this area of Texas, what kind of waivers they have for children with special needs (not Medicaid), accessible playgrounds, best public schools, ect. Any other information would be helpful! I’m doing my own research but I also want to hear from personal experiences. Thanks in advance!
Hello
I am an Educational Assistant with the local school board and have been doing this for 15 years. One of the things that makes me uniquely qualified is that I myself have gone through the same school system as a special needs student in the 80s. As an EA I have seen very little change, for the most part it's filtering kids through a system without any real opportunities. I had to fight through the system and was told no by my own guidance counselor when I tried to level up. I had to go to the VP to get where I wanted. I graduated high school with the most improved grades award and went on to university. My question is, does anyone know how or whom to contact to have my concerns heard by our government? I am Canadian and live in Ontario Canada. Any help will be appreciated!
My son is in a special education program through the district but is a third party school. He is diagnosed with ASD and ADHD. Currently, he is going to district's aftercare program from 3:30-4:30. Last year he was doing very well in the program, however this year has been a struggle (and we're only halfway through the second month). He is on his second suspension, this time for a week, and is one suspension from expulsion. I'm a single mom and a full-time student so aftercare is essential for me to continue my studies. What are the other parents of special needs kids doing for aftercare? What other options are there? I've called the special education department of our district & am waiting for a call back but I'm prepared to receive little to no help.
If you're looking for where you can get free special needs parenting resources check out this group on Facebook-
https://www.facebook.com/share/g/7wa3JrnRQyFHReAZ/
There's also a special community where you find special needs parents struggling with the same challenges as you.
Youths and adults. My main goal is to create a type of survival guide for these individuals, especially as we head into major uncertainty in the future. And to spread awareness about the discrimination, misunderstanding, invalidation and stigmatization they face regularly in society.
https://buymeacoffee.com/tdefries/posts
#2egifted #gifted #culture #collectivism #ableism #tallpoppy #tallpoppysyndrome #mentalhealth #freespeech #specialneeds #neurodivergent #spectrum #autistic #humanrights #discrimination #neurodiverse #communication #behavior #SOS #tolerance
Hi everyone,
I’m a fourth-year college student conducting research on tools and methods that help children manage their emotions, particularly in low-income communities. I’m hoping to gather insights from parents, caregivers, and experts in the field. Specifically, I’d love to hear about the challenges you’ve encountered with emotional regulation in children and any tools or approaches you’ve found helpful.
I would greatly appreciate it if you were willing to share your experiences or advice! My goal is to better understand how we can improve the emotional well-being of children in underserved communities. The interviews can be conducted over chat, phone, or Zoom. Whatever is most convenient for you.
Thank you so much for your time and any input you can provide! Please DM me if you are interested.
Moved to the eastern shore and my special needs daughter needs a PCP. She’s an adult so pediatrician won’t work. We’ve been trying for months. We need help. We even reached out to community service and no luck there either.
Sorry for how long this is going to be but I have a 6 yo ASD level 3 child who also has Dravet syndrome (intractable epilepsy). He is developmentally between 9 and 15 months old. We are at our breaking points and dont know what to do. I love him to pieces but he is so hard to handle. He throws tantrums and will hit and kick and he is so big and strong and doesn't realize how big he is. He has a little sister who we are so scared he is going to hurt one day. He will throw things breaks so many items. Doesn't understand no or redirection. He still plays with his poop and will smear it everyone if we don't catch him as soon as he poops. Not potty trained and despises clothes so he takes them off and pees and will try to take his pants and pull up off in public. He will run away if we don't keep a children's harness on him. Head bangs and has about 50+ seizures a day made worse if he throws tantrums. If he doesnt want to do something he will completely fall to the ground almost making us topple over and we are scared of hurting his arm when he does this. We just don't know what to do. He just doesn't understand. He is completely non verbal and so he crys when he wants something and we have to just trial and error with what he wants. He can only go half day to school cause the teachers can't handle him. Literally today I went to pick him up from school they were on speaker calling the class. They said " (sons) mom is here AND THEY LITERALLY CHEERED. The doctors, therapists teachers and us don't know what to do. PLEASE HELP. Any advice appreciated. He is currently on calming medicine (Clonazepam and risperidone) and they still don't do much. I'm so lost as a parent. We have no friends or family no help at all so it's just me and my husband (who is also autistic so struggles with his tantrums)
I'm about to start the process of setting up my child's SNT and seeing conflicting information about a Qualified Disability Trust. Some sources say the beneficiary must be receiving SSI benefits while others say they must be receiving or eligible for SSI benefits. My child is under 18, meets the SSA definition of disabled, our income is too high for them to receive SSI benefits or Medicaid, and the waiver list is years long. Does this mean we can't set up a Qualified Disability Trust? (Yes I am finding a special needs estate/financial planner to help us set this up but I want to be fully informed and come in with good questions!)
Hi, I'm a PCA to a non verbal child in public school in the state of Ms. On 2 separate occasions I have witnessed the actual teacher and another PA holding a child down in a chair by his arms and legs. He was not a danger to himself or anyone else at the time. They wanted him to work is all. I did 'soft' report this to our director. As in mentioned it during an impromptu meeting. No paper work. I haven't seen anything come of it. And nothing else has been mentioned to me about it. That was weeks ago. I thought things would stop and everything would be ok. Recently he was on the floor and she took his arm and dragged him across the floor to her desk. What is my next move here? This makes me absolutely sick to my stomach. If this happens with me here, wtf are they doing on days that I'm out?? This is a very well liked teacher. She absolutely bullies these kids y'all. It breaks my heart. I have family members who were non verbal when they started school. This has to stop.
Currently in Birmingham area. We moved into an affluent area for the school system for my daughter. (We are in the poor section of it but we made the cut). My daughter is 7. Overall diagnosis is Cerebral Palsy. She is nonverbal, wheelchair bound, gtube dependent, and has CVI. Kinder year for her was AMAZING. I don’t like the people in our area but her happiness and well being is worth it all. This year has been a nightmare. We’ve had multiple meetings and I’m physically sick sending her to school daily because I do not feel like they care for her correctly - I will say it’s all new staff/teacher but at this point we are 8 weeks in. My partner and I have discussed moving numerous times often saying we need to wait because the school was great for her. I no longer feel this way. Anyone have any recommendations of areas that are wheelchair friendly, special needs friendly, and a school system you feel safe having your child in? I have family in Chattanooga, but from what I’ve gathered it doesn’t seem much better than my current situation. I teach so I am pretty flexible to move. I have a 11 year old boy who is super involved in soccer too. I just want to be somewhere my daughter can be happy and cared for.
We're really struggling to manage our son's drooling, he's five and we've tried glyco, hyacine patches and Botox, but all with limited positive effects and often some big downsides.
We've been told surgery is an option, this duct ligation where they somehow "tie off" two or three of his saliva glands to reduce the amount of saliva he physically can produce overall, but he's had so many surgeries in his five short years that I feel rubbish about sending him in for any more, and then I hear that the effects can be temporary in a lot of kids.
Has anyone here had their kids go in for it? What was your experience like?
Greetings! ✨
I am Srishti, currently pursuing my master's in applied psychology (clinical and counselling practice).
For my dissertation, I am conducting a study on Character Strength, Quality of Life, Subjective Happiness and Caregivers' Burden in primary informal caregivers of children with ASD (Autism, Asperger's syndrome, childhood disintegrative disorder, and an unspecified form of pervasive developmental disorder)
I invite you to be a part of this study, if you meet the mentioned inclusion criteria:
1)Must be raising a child with diagnosed ASD and are providing care from at least last 6 months.
2)The child must be in age range of 3 to 18 years
3)Able to comprehend the English.
The link to the form is:
https://forms.gle/LfsrrpfNwKzBfXga6
(Time taken approximately 15-20 min.)
Please note, your responses will be kept confidential and used for research purposes only. I will be immensely grateful if you could contribute to this survey and encourage known individuals (who fit in the criteria) to do the same.
For any queries, please contact [b2020apccp0125@stud.tiss.edu]
My 4 year old is very aggressive and reactive - hits, scratches, knocks things over when angry about something, shrieks, spits when told “no”, etc. He’s constantly telling us we’re bad, that he hates us, etc. My family is at a loss. We’ve started OT and have a therapist who did PCIT training (didn’t really help). He’s starting a special half-day preschool next month for children with behavioral issues. He has been diagnosed with ODD. No other diagnoses but he hasn’t yet gotten a full neuropsych evaluation. His language is fine, but he prefers baby talk and gets in a rage when we ask him to talk in his big boy voice.
I think we are doing all the right things, or at least trying, but even on good days I have a pit in my stomach about his future, about this turn of events (like a flip switched when he turned 3), about our inability to help him, about our 7 year old who is in the home. And even on good days, we are just waiting for it to change, because it always does. We are constantly on edge. The pit in my stomach never goes away. I cannot help but catastrophize for his future. I’m just so worried.
I realize everyone’s experience is difference, but does this ever become your new “normal”? It’s been a year of our lives turned upside down and I’m still in disbelief. Maybe I need therapy myself!
My brother’s (27) diagnosed w cerebral palsy (nonverbal + can’t control extremities) and was taken to the ER last week presenting with a UTI and uncontrollable (what they think are) fever-induced seizures or I guess that the fever was the trigger for his flare up. He has an epilepsy diagnosis and has been on meds for them for the past several years since onset. However, he still gets taken to the ER from his care facility when they increase in frequency or length.
They’ve been pushing all kinds of seizure meds but his heart rate is remaining extremely elevated (150-180) when his normal is much much lower (resting: 50/60) and he is continuing to seize. He’s recently been transferred to the ICU and our local hospital is almost complete with their treatment plan of antibiotics for the UTI. They believe that the seizures are under control and that the spasms we’ve been seeing multiple times an hour (and believe are, in fact, seizures) are due to him being in an unfamiliar environment. We disagree, and although a neurologist told us she received normal EEG/EKG results back further proving her point, a nurse read her report aloud to us mentioning abnormal results. He’s also been on and off a ventilator to help him breathe. He has a trache but seems like he’s struggling with heavy and abnormal looking chest movements.
My question is, what are other hospital in or around NY specifically that are specialized in special needs care? Should we be looking for hospitals that specialize in neurology? Our local hospital just doesn’t seem like they have the research or resources to help any further and seem done. They’ve presented us with the option of keeping him on a ventilator but that, from what they’ve explained, comes with the risk of him becoming dependent on it and seems detrimental to his long term health if he makes it through this.
So I need advice on how to get a student to participate in work assignments. I'm a teacher assistant first year working with special education. I'm a one on one with this student who I believe might have autism and adhd. It sucks that the school doenst tell us what condition they have because it would be more easier to understand them. This student doenst like to do work at all and if I tell him more than twice he will get very angry and hit me. He has this thing where he likes to hit student in a playful way. He likes to always put his hands on other student and most of the time I have to make sure he doesn't. I really want to get this little guy involved more in activities, but I can't force him obviously because he gets very mad and will hit me. He's only a first grader btw. He can talk but sometimes it's hard to understand him. Any advice on how I can help this little guy get involved more.