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Old 11-15-2012, 12:15 PM   #1
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Angry Am I the only honest neurotypical sibling or did I just have a bad experience?

All I ever hear from siblings of autistic kids is "oh its so rewarding, I wouldn't change it for the world, it taught me so much, its so worth it" and I'm going to call ********.....

I'm sorry but I find nothing rewarding about having to stay locked in my room all day with my youngest sister b/c shes on a violent rampage, having your possessions destroyed CONSTANTLY, listening to my parents tell my three year old sister not to cry b/c it sets off autistic sis (right telling a 3 year old not to cry by being thrown against a wall!) being the last to get to and the first to leave family gatherings b/c of her behavior, witnessing my youngest sister getting thrown against a wall, having stressed burnt out bitter parents, not being able to go anywhere, not being able to have friends over, having to sit on the edge of my seat in the car (we had a mini van me and youngest sis sat in the middle and autistic sis sat in the very back) so she was less likely to be able to hit me, one time she did hit me and I yelped "ouch" and instead of asking if I'm okay my dad said "you handled it lousily!" Right at 10 years old I'm supposed to handle being beaten up in a different way apparently.... and on top of that I'm wrong/selfish/not sensitive enough for not thinking that this is the greatest thing since sliced bread.....Everyone cries boohoo for the parents going through this but if a sibling complains AT ALL we're told we're wrong, insensitive, "oh but imagine how hard it is for the parents" no one gives a damn about the siblings! And on top of this I'm expected to be her guardian once my parents pass on and I really don't want to be! Also Since I'm the only healthy biological child (my youngest is adopted) I'm expected to give my parents grandkids, **** THAT IM NOT GOING THROUGH THIS AUTISM **** EVER AGAIN! I found a doctor who will tie my tubes and will do it as soon as I get the funding!

I've struggled with bulimia, depression, anxiety, and my therapist also says I have post traumatic stress disorder (nightmares, flash backs, my eating disorder etc) but my parents get upset at me when I mentioned that, they barked back "oh all therapists do is blame the parents and tell us how to raise our kids!" When I used binging/purging to control my emotions I thought of my sister, the therapist says its a result of having to bottle up my emotions for so many years and quite frankly I agree.


Can someone please tell me how this is so rewarding b/c I'm dying to know! "Oh having an autistic sibling makes you more mature/compassionate/wise beyond your years" yeah yeah yeah I've heard all that, and yes I do think I'm more mature than most of my peers (despite what this post may suggest) but honestly all this extra maturity isn't worth bulimia, PTSD, and strained family relationships, I'd gladly trade in this "rewarding" maturity for a less stressful life sans bulimia, nightmares, and PTSD.

I feel like to my parents I am two things: a future guardian and a breeding cow, nothing more.

Do others feel this way (be honest) or did I just have a bad experience? My sister is on the severe end of the spectrum.

Last edited by ladybug2203118; 11-15-2012 at 12:17 PM. Reason: forgot to write something

 
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Old 11-29-2012, 09:41 AM   #2
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Re: Am I the only honest neurotypical sibling or did I just have a bad experience?

I am not a sibling, but I am a mom of a teen boy with Asperger's and ADHD, as well as a teacher at a school for children with various learning disabilities...including Autism.

I will tell you this, it took us a long time to have children; and when my son, who is very high functioning, but struggles with behavior and mood, never seemed to make it past the "terrible-twos" we intentionally waited on trying for more children. His behavior can get pretty volatile at times, but has become less frequent with medication and treatment, but we never ended up having more children. As much as I love my son, I knew the chances were pretty high for us to have another child on the spectrum and I didn't know if I could handle it. If he had not been born first, and I had other children, I can only imagine how that would have impacted them. There is nothing to describe the feeling of being attacked by your own child, who is bigger and stronger. I can only imagine that you went through a lot of fear and anger growing up. As a mom, I go through heart-break. How can the child I love so much, and sacrifice so much for, get so angry that he hurts me? I will say this is rare; he usually yells at me, bangs walls, throws something or tears up paper; but it can “look” very intimidating.

As a teacher I have seen many families struggle and many parents just do not know how to handle a child with issues like your sister. They require so much time and monitoring that the other children do sometimes get neglected. Many people just want to keep them happy and not rock the boat so they do not have a "melt-down", but then they never learn how to cope with real life situations that do not always go their way. This is not an excuse but it is very overwhelming and parents do not come equipped with the knowledge needed to deal with these issues. Unfortunately, you were stuck in the middle of all of the hell and torment.

Not all families "experience" Autism the way you did. I guess since I come at it as a mom and a teacher, I can empathize with the families who have the children that are harder to handle, so I can love them and their children because I live there. But many kids on the spectrum are so innocent and honest and unique that it is hard not to love them. As hard as my job is at times I find it very rewarding. I do have to go home at the end of the day to raise a kid on the spectrum and he is fine most days, but on other days I can understand why you feel the way you do.

I wish you had received more replies but this is probably an uncomfortable topic for many people. I hope that you can move on and live your life; you deserve to have one of your own. I know your parents are worried about who will be your sister's caretaker, but ultimately it is a decision you have the right to make. There are times that I do wish I had had more children; partly because my son will be alone when we pass, although it is my goal for him to be able to live independently when he is older. But, I also do not know if he will ever marry or have children...thus no grandchildren (I know…it’s selfish).

 
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Old 04-10-2014, 12:30 AM   #3
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Re: Am I the only honest neurotypical sibling or did I just have a bad experience?

I am totally there with you sister.

I am also totally amazed you only got one response on here, and not even from another sibling. I had to let you know that you are NOT alone in this experience... Maybe we are on the wrong message board or other siblings are just too ashamed or numb or beaten down by the facade it takes to emotionally manage the rest of the family in this position (especially the parents) to admit the truth of the pain that severely autistic people bring to family life.

My childhood, while it had its highlights, was totally in the shadow of coping with a violent nonverbal OCD destroyer of a brother, who constantly targeted me for his "pinching" (more like clawing-into-flesh-and-then-ripping-outward), hitting, and tearing at me/pulling/pushing me when I was just, say, sitting on my own damned living room couch - he was VERY TERRITORIAL with any room with a TV or computer. Bites, too, poop on the walls, CONSTANT unearthly noise, both in childhood and even WORSE in adolescence - it was like living in the exorcist movie, and going to the same high school meant 24 hour noise, plus the anger and isolation if other ignorant jerks pointing him out and making fun of him, and autistic people generally. Yea, a real ****** walk in the park. Not so much!!!!!

All this and my parents just constantly gave him what he wanted in order to appease him/stop the incessant bugging, prodding, and demands plus possible violence. Essentially, I always felt like they rewarded him for being a bully (I know it's kinda different with the OCD thing, but still! You don't give a two year old everything they demand, you let them throw a fit! He should have had a time out! But my mom was anti-punishment and my dad was overwhelmed, he would just turn to violence himself and that is not the answer, so nothing happened.)

I blocked out all of this trauma as much as I could, and it all came flooding back to me when I was 19. Horrifying to remember my arms full of bruises at 4, feeling helpless to defend myself and totally unprotected/vulnerable.

I would cry to myself in my bedroom listening to his gurgling roars and compulsive hacking in high school and wonder why me, why couldn't I have had a different life, why couldn't I handle this better, feeling COMPLETELY alone. Nobody understood or even cared to ask how I was doing with being the.big sister MY ENTIRE LIFE!!! No one ever said, wow - that must be hard. They only wanted to know what autism was and then changed the subject. When another young man finally did express sympathy (wow, that must be really hard) it was such a shock and I was so desperate to hear it, I was so bottled up just trying to cope that I had barely even let myself acknowledge how difficult it was! I had a nervous break down start pretty much immediately after the interaction, it was so powerful. Then the private crying started... Then I got angry. At my parents, at my friends, and at the world at large for being so insensitive. At that time I even wished my brother would have just died when he had his aneurism at 11 years old... I was desperate for relief of duty... And I knew it would never come. I knew I would be the one taking care if him, and I feared he might even kill or seriously injure one or both of my parents as they aged. I feared we would be broke in supporting him, or that I would be the constant victim of violence, or that a cop might kill him if someone (who knows, maybe me, or a hired caregiver) ever had to call one. It was the most stressful existence I can imagine, short of living in a war zone or with a rapist/molester. Not how most people like to think of or portray their family lives.

Fortunately for me, after adolescence and leaving high scool at 21, he really improved behaviorally and became quite happy and relaxed (MOST of the time, routine and tasks do wonders) and we got to enjoy each other a little more often again, before he finally died of a killer seizure last year, this month!!! I feel guilty even saying it - but it IS my truth, there are no rose colored glasses to the past for me (my parents of course now act like he was never a burden) - I have now been forever relieved of duty, and I am grateful. While I am and will always be equally grateful for the extreme empathy, patience, tolerance for pain/hardship, and emotional intelligence and strength my brother "taught" me, I am. Relieved. May he rest in peace, liberated from the limitations if his body, and take the lessons he learned here back to the source, where we will all join and bring our lessons and experiences, too, for the benefit of the cosmos. God/dess bless you on your journey and please DO seek out a *good* psychologist to help you accept both your sister and, maybe even more importantly, the parents who so wrongly treated you in the process.

Oh, and hell no am I having my own children, unless they can screen for autism in utero... I would rather adopt, foster, or abort rather than relive that hell outside of memory. I refuse. Enough is enough. Thank you.


Solidarity!!!

Last edited by double0devin; 04-10-2014 at 12:46 AM.

 
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Old 05-13-2014, 01:09 PM   #4
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Re: Am I the only honest neurotypical sibling or did I just have a bad experience?

My experiences with autism are very similar. When I was eight my little brother joined our family. Luckily for us my brother was one the ones diagnosed early, at about 2 years. The following ten years were terrible for me. I've been bitten, kicked, punched, stabbed, pushed pinched, hair snatched, anything you could imagine. Unluckily for me my single mother wasn't quite strong enough to handle I things herself. When it would get to be too much for her I would wind up taking over, having to pin my 6 year old brother to the ground in the middle of a public because he couldn't have a cereal he wanted. Screaming, self mutilation, even being afraid of him sometimes. I too have pages of horror stories I could write about poop, and the time he was eating the skin off the tips of his fingers so bad he had to have surgery. But out of all this, as of today, thanks to years of playing with medications and therapy, he is now a 6'4" 18 year old about to graduate from a special high school and is eager to be a functioning part of society. And it kind of breaks my heart for him because even though he handles himself well I couldn't honestly even see him working as a grocery bagger at publix. The way he handles social situations. He is no longer violent but is still awkward and seems to not think before he speaks. He wants a wife and kids someday and seeing all the progress he has made from age 6 and on I just am so unsure whether or not those thing will happen for him or not. Even though I endured what I endured when I was younger I do not hold those things against him to this day and wish my brother nothing but the best in his uncertain life. I have had my own kids since then. Two, nuerotypical children who are nothing but joys in my life who love their uncle. He really is so smart. So I guess I've gotten both ends of this ride and for some it goes well and for others it just doesn't. But I know how both sides feel. I have felt the resentment and the burden of autism but I have also felt the joy of seeing him progress so much. Having him the way he is now, I would not change anything about him. He knows he's autistic and struggles with it everyday, just like we did when he was younger and could not control it. I love my brother with all my heart.

 
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