Siblings with disabilities

[Kuervo]

how many of you have siblings? i would say many. ok my question is, how many of your siblings have some kind of disbility? i don't even know if this question is appropriate or not so mods if you like move it.

well i have a brother who has autism, it's really hard to live with him.

[Gumleaf]

i have an older sister and neither of us have a disability. i really admire those like yourself who have a difficult time while caring for your disabled sibling. it must be very difficult for you and i can only imagine how things are for you.

[RaisingSand]

Not many people actually know this, but I actually have a form of autism known as Asperger's syndrome. This has been known since I was about 7, but I've managed to learn enough to cope with it in my day-to-day life, though I still struggle, mainly with large social situations and one-on-one IRL conversations with people I don't know. I'm very literal, and IRL, I don't really have much of a sense of humour, as it takes me a while to get jokes as I tend to take thinks a bit more literally than I should.
As for how my siblings deal, they don't actually treat me any differently. Occasionally I'll cop a bit of flack for not getting a joke or something, but that's about it.

[Whisper]

I have two older sisters
and I've always been the fucked up one in the fam...
Severe clinical depression
Insomnia
Self Mutilation
Attempted Suicide
I've put my fam through hell

[Kuervo]

it really is hard for me, you know, he hits me, kicks, bites, everything you can think of. but with him we have had a lot of opportunities to do stuff, for ex- we went to San Carlos for his dolphin therapy. but i do sometimes wish he was a normal kid like everbody else

[RaisingSand]

it really is hard for me, you know, he hits me, kicks, bites, everything you can think of. but with him we have had a lot of opportunities to do stuff, for ex- we went to San Carlos for his dolphin therapy. but i do sometimes wish he was a normal kid like everbody else


Yeah, I've met a few people like that through a local autism support group for families in my area, that's how I met my friend Craig, who has Asperger's, like me.
I think me having Asperger's is hard for my parents, though. We're kinda wellknown in our area and we get invited to a lot of events and stuffs, and I usually have to go, too. They're generally fun, but I find it really hard to be surrounded by so many people, and I really don't know what I'm meant to do. I don't know how/when to start a conversation, when not to talk to someone, and I really just can't ... like, read people. Like facial expressions and things. I just don't get it. And while this sounds evil, I really don't have all that much empathy. It's not that I don't want to, it's just something that's not there for me.
I've always had social problems at school, which was a factor in my leaving last year.
My parents have always encouraged me, but sometimes they get frustrated. Mainly when they see me getting frustrated when we're at occasions because I'm just struggling. But it's just something you learn to deal with. A lot of my social behaviour many people see is just tactics I've observed and tried to mimic. It's like pretending to be normal, and not failing, but no quite suceeding, either.
My fiance knows all this and supports me, but I know it gets a bit difficult for him. I think his persistance and love for me is amazing.
Anyway, I've probably said enough now.

(Sorry Kodie etc, was not trying to steal the topic, I was just trying to explain.)

[AutumnDae]

I have a large family, there is 7 of us. Two have never lived with us, they are way older, from my dad's first marriage.

My younger brother has a mild form of Asperger's as Lauren does. He has been seeing a therapist for probably 4 months now, and he has gotten a lot better with it. He was just there yesterday actually. He only has to go back in September to see how he's doing, which I think is awesome.

He's not hard to live with at all. It's like living with a normal 9 year old, except he does get angry over small things and throws fits occasionally, but we can handle them.

[kerry]

i really admire those like yourself who have a difficult time while caring for your disabled sibling. it must be very difficult for you and i can only imagine how things are for you.

I agree
i have two sister both wear glasses :rolleyes:

[Techno Monster]

I have chronic anxiety disorder, so even though I'm on meds, I always seem to crack under pressure. It is hard to deal with at times, because I worry a lot.

[byee]

it really is hard for me, you know, he hits me, kicks, bites, everything you can think of. but with him we have had a lot of opportunities to do stuff, for ex- we went to San Carlos for his dolphin therapy. but i do sometimes wish he was a normal kid like everbody else

Yes, nachol, it is hard having a sib with a disability (mine don't, but being the sensitive creature I am, i can still relate to your situation).

One of the things that always stands out for me isn't just the disabled individual's handicap, but the *other* siblings reactions. The disabled one gets the understanding and the treatment, yet often it's the other sibs that bear the brunt of the difficulty, the loss of normalcy, without getting the support and guidance they really need.

I'm glad you shared this, hopefully you can get some of that here.

[Kaleidoscope Eyes]

((Brace yourselves for another insanely long post from Jessi. I tried to cut it down, but it's all part of the story.))

My sister is no longer with us, but she had what's called Noonan Syndrome, a rare genetic disorder. It affects the heart, the brain, the muscles, the kidneys, the liver, pretty much everything in some form or another. She had some cranio-facial deformities such as: large head; big, wide-set eyes; low-set ears, low hairline. She was tiny; at almost 10 years old she about 3'11" and looked like she was 5 or 6, and the bones of her chest had a sort of caved-in appearance. She was born a month premature and immediately had a stroke. She was in the NICU for the first month of her life, and the nurses had to smuggle me in to see her because young children aren't generally allowed in there--too many germs. Also at birth, it was noticed that the tubes leading to one of her kidneys were basically tied in a knot. The kidney wasn't functioning. They attempted surgery when she was a few months old, but the doctors didn't think things through and tried to do it the old-fashioned way, making an incision around the side, which involves flipping the patient over mid-procedure. This is risky even for patients without complications, and her heart stopped on the operating table. They flipped her back over, resuscitated her, and didn't attempt to try again. She lived in a lot of pain from carrying an essentially dead organ until she was 18 months old, when we found another doctor who told us they could do a laparoscopic surgery, making a few small incisions on her stomach and using small cameras to take the kidney out without as much of a risk. Why the original doctors didn't tell us this was an option, I'll never know, but we went ahead to do the laparoscopic procedure and it worked out fine. Her main problem was her heart, though. She had what's called hypertropic cardiomyopathy (HCM), a condition which causes the muscle in the heart to be too thick. The problem with this, is that the heart beats based on electrical signals from the brain; if the muscle is too thick, the signals are sometimes misinterpreted or missed altogether. With a normal person, when the heart stops, they can sometimes be brought back with CPR or a defibrillator, but with HCM that does little to no good. Because of this, she had a heart murmur, and was on medication to keep her heart beating regularly. The doctors were very clear with us though that it was only a matter of time. They didn't know what was wrong with her, just that she had all these different conditions and symptoms (we didn't get the official diagnosis of Noonan until she was 8, until then we just called it Ally Syndrome), and that's probably part of why there was so little we could do for her.

She had 7 surgeries over the course of 9 years, some worse than others. It was always so hard for me to watch my parents drive her to the hospital (I never went along, my parents preferred for me to have plans that day so I wouldn't be sitting around stressing), knowing they were going to cut her open yet again. She was a trooper though, and she never really complained. Sometimes, she would ask, "None of my friends have to see so many doctors, so why me?", but in the end she understood that it was something she had to go through, something she couldn't change, and she stuck it out. When she was 5 she had surgery on both of her eyes, to correct a lazy eye she'd had since birth. It was the first time they wouldn't allow my mother to be in the recovery room when she woke up--they always let her in to say hi and let Allison know it was ok while they did all their normal tests and things. This was made worse by the fact that she was initially blind and couldn't really tell what things were. My mom was outside the room, fighting with the doctors to let her in, while Allison was screaming and crying and carrying on. They sedated her, checked her out to be sure everything went ok, and then let my mom in. To make it worse they hadn't given her the Versed, which is a medication given along with the anesthesia which keeps you calm and typically causes you to forget falling asleep and waking up--the two most traumatic parts of most surgeries. So, she remembered everything--being more-or-less blind, surrounded by strangers who were poking and prodding, and not knowing where her mom was, not even being able to hear her voice when she had gone into surgery fully expecting that she would be there.

She was different after that. She could still go to doctors' appointments, but was terrified of surgery, of having to do that again. My mom promised her that was the last one, but when she was about 8 she had to have another, on her legs. Another symptom of Noonan involves the muscles, specifically those in the legs. Her calf muscles weren't stretching at the same rate her bones were growing, and she was being forced up onto her toes in order to walk. The muscles simply wouldn't stretch far enough for her heels to touch the ground. Surgery was needed to cut the muscles, which would then regenerate to connect back together at the proper length. She was wheelchair-ridden for 8 weeks, and that's when things went downhill for her. Despite the fact that she was small and couldn't do contact sports because she only had one kidney, she was very active and she hated not being able to walk, or to run on the playground with her friends. I think it was the first time she really realized how limiting her disorder could be, and she was devastated. Mentally, she regressed, and became about 6 years old again. We found an amazing child psychologist, and things got better for her. Once she had learned to walk again she perked up, though she never quite made it to a typical developmental level.

All of this was really hard on me. From the time I was 4, I wasn't allowed to be a kid anymore. I had to accept that Allison needed the attention more than I did, and that my parents were exhausting themselves to take care of the both of us. So, I grew up. I didn't complain about scraped knees, or eating something I wasn't fond of for dinner. When Allison would be having a bad day (she got overstimulated easily, and would then scream and slam doors and literally push away anyone who tried to help her), I would stay out of the way, offer to help wash dishes after dinner, anything I could to ease the load. I felt it was my responsibility to make sure that my parents didn't have me adding any more to their plates. And they treated me like an adult. I was mature for my age, sure, but they sometimes didn't seem to realize how young I actually was. But I refused to say anything, they didn't need to deal with that.

I slowly got more and more depressed, especially once puberty happened and I had all those hormones going crazy. But I didn't care about me, I just wanted to make life easier for my parents and be a supportive big sister for Allison. I still got straight A's in school, and while I didn't have many close friends I could usually find someone to eat lunch with so I tried to tell myself I was fine. By the time I was 11 (around the time Allison had the leg surgery), I started cutting myself to deal with it all. It was stupid, but at the time I felt like it was working. I'd get mad at the whole situation, that I couldn't be myself or ever really relax, that I had to be so mature all the time when I was still such a kid, that I couldn't even complain because I couldn't stand the look on my parents' faces when they realized they had another child to console; and then I'd turn and get mad at myself for even thinking that, for even thinking that this was about me, that I had any right to complain about it all. And the moment I broke the skin, I was gone. I hardly realized what I was doing until it was over, until the pain was slowly starting to bubble up, and then I'd cry myself to sleep. I hated having new friends over, because I'd always have to explain to them how Ally was different, and how they needed to act different around her (due to the trauma she'd been though, she'd developed several random and irrational fears, so there were certain things you couldn't say around her). After a while I just went to other kids' houses, and didn't bring them to mine very often.

By 8th grade, when I turned 13, I'd mastered the art of the poker face. My expression was blank unless I deliberately chose to show some emotion. I could laugh at funny things, smile when I was supposed to, even if I didn't feel any of it. And no one caught on. Then, Allison died, and I lost control. In the waiting room at the hospital, when the doctor told me they hadn't been able to save her, I was half-sobbing/half-screaming so loud that a nurse came and shut the door because I was bothering people. Within a week though, I had managed to pull myself together enough to get the old facade going again, and my parents immediately knew something was wrong. My smiles were too happy, too inconsistent with the mess I'd been just days before; I started getting sloppy with my cutting, ignoring the fact that, even in November, SoCal just doesn't have the weather for jackets and long pants very often. My mom found out, got me into therapy. It took a few tries to find a therapist who fit me. The first one I refused to talk to, sitting in silence the whole time; the second one scarred my family for life when she called us all in to talk and pulled up an empty chair for Allison, accentuating her absence when we were just starting to reach a point where we could do normal everyday things. The third one worked out though, she actually understands me better than people I've known longer and see more often, and I've been seeing her for about 3 years now. She connected me with a psychiatrist, to talk about medication for my depression, and I was diagnosed with Bipolar Disorder 2, and a general anxiety disorder.

Things are so much better for me now. I'm able to think of myself when I have a problem, instead of convincing myself that others are always more important, and I don't resent my parents for giving Allison more attention. I'm alright now, and I know they care about me, so it doesn't matter anymore what happened in the past.

Sometimes I still get a little mad at Allison for leaving me, because it was the worst pain I'd ever felt in my life, but I realize that it worked out. I've gotten help, and she's someplace where she doesn't have any limitations.

[Sugaree]

i have two sister both wear glasses :rolleyes:

I don't see how that's a MAJOR disability. I have a stigma that varies from day to day and today it was very strong. I have had to wear glasses since I was 11.

I find it to be NO fun at all. But, I don't see it as being a disability. I could see it as a minor setback. But for it to go to a disability? No, I don't think so.

[Maverick]

Moved to Family and Friends.

[japanman]

none i have adhd and anxiety but im the only one. I think ppl with disabilities kick ass b/c they might have to go thourgh more.

[Techno Monster]

Sometimes I still get a little mad at Allison for leaving me, because it was the worst pain I'd ever felt in my life, but I realize that it worked out. I've gotten help, and she's someplace where she doesn't have any limitations.


Now that part got to me, I am sorry for your loss.

[byee]

I've read your story before, Jessi. It's very touching and very amazing.

I think things happen in life for a reason, and eventhough we cannot figure that out, or it seems cruel, I believe things have a purpose. Sometimes it takes awhile, maybe even a life time for those reasons to be revealed to us.

I think one of the things Allison can be grateful for is having a sister like you. I just know she appreciated who you were to her and what you meant. I believe that't truly life's greatest calling, caring (I mean really caring) for another person with all your heart and all your soul.

One of the things that we can be grateful for are the lessons your giving to her so freely and so wilingly taught you. Whoever is lucky enough to share your life with you will be grateful for that, that something awesome arouse from such tragedy.

[RaisingSand]

I have a large family, there is 7 of us. Two have never lived with us, they are way older, from my dad's first marriage.

My younger brother has a mild form of Asperger's as Lauren does. He has been seeing a therapist for probably 4 months now, and he has gotten a lot better with it. He was just there yesterday actually. He only has to go back in September to see how he's doing, which I think is awesome.

He's not hard to live with at all. It's like living with a normal 9 year old, except he does get angry over small things and throws fits occasionally, but we can handle them.

I'm a little confused by your statment ... I wasn't aware you could have a mild for of Asperger's. Are you sure he's got it, or is just showing certain traits of it?
Because seriously, I really wouldn't wish this disorder on anybody, which is a reason I'm apprehensive about having children. It's still not really known how it's passed on (genetically speaking). While I wouldn't say it's the worst thing that could happen, it's just ... I dunno, awful, really. I've felt isolated and have had trouble communicating because of it my entire life and I feel very distanced from basically everyone else in my life. I want any children I have not to have to experience and go through and feel what I did and have.
They weren't totally 100% sure I actually had Asperger's to begin with (mainly because I'm female and girls having it is really rare), so I actually ended up seeing and being tested by two psychologists, and then a psychiatrist before my parents and Bruce (the psychologist I still see today) were totally convinced.
Not only that, it's taken me a few years to come to terms with this. It's like, I know I'm different, but I don't want to be, and I really don't want to be labelled.
I'm just going to stop typing now ... it's been good to kinda talk about it a bit the last two days, but mainly this is just something I like to keep to myself. Mainly because I've had incidents when people have found out about my Asperger's and have actually started treating my differently and like I'm retarded. Thus, I have issues talking about how I feel about this stupid thing, and my feelings towards it, and me.

Sorry for that confused, rambling rant ... I meant it when I said I have real trouble conveying what I mean and explaining myself.

[EmilyJane]

I have an older brother, he's 23 and i'm 19
he's servilely disabled, suffering from both mental and physical disabilities.
i love my brother, and he is brilliant he has the mental age of a 3 year old and he makes me laugh so much and i teach him all this stuff like reciting stuff which he's really good at because of his autism and to high five! and to thumbs up, but his thumbs bent but still.
anyway, i never really found Adam (thats his name) difficult to handle, it was the fact kids would stare and point in the street and when i was younger i couldn't understand why, corse now i'm older i get it's because he's different.
my point is if people understood disability more, then kids wouldn't stare and make fun of people like Adam
However my parents have to dedicate a lot of time to his care, and drop everything if he goes into hospital, which is kinda sucky.
so that's my side of it.

[Kaya]

Both of my younger brothers have a rare disease called CDGS.
My youngest brother, Samuel, died at age 8.

[mrbob360]

nope nore do i know anyone with a disability

[prob1996]

I have an older brother (he's w/o disabilities) and one his best friends has a brother that's austic. I've hung out with them and I really don't know how they handle it. It seems tough at times. Not sure how I would be able to do it myself. Much respect for those who do.

[boonsim]

My older sister used to have fine motor problems, but she took physical therapy and she is pefectly fine now. She wants to be a writer, something she clearpy can do as a 17 year old as opposed to a 6 year old who can't write whatsoever.

[Kuervo]

this seem really late but lol kinda of an update on him.

recently, few months ago my brother got his vns (vagus nerve stimualtor) off cause it didnt work anymore. i dont know if i mentioned it but other than autism, he also has epilepsy, and the vns helps with the seizures and all. wut i dont like is tht he takes a lot of medication and it sometimes worries me u know. and its daily too, like 9 each day. nows hes 14, gna be 15 in october. Hes in puberty so hes growing fast. he still cant talk, cant decipher right from wrong sometimes, its just confusing and frustrating at times. hes not the little kid anymore. hes growing up and whos gna take care of him when he gets old. He cant marry, he doesnt know what sex is, he cant do basic math, he cant write, read, anything. its really confusing now seriously........grrrrr

i mean, idk wut we're gna do. im 17 now, 18 in 6 months. hard stuff. so thats the small LATE (lol) update on him.