Autism Parents: How much do you expect people to deal with? How much istoo much?
January 3, 2013
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Now Reading: Autism Parents: How much do you expect people to deal with? How much istoo much?
January 3, 2013
(ORIGINALLY WRITTEN & PUBLISHED ON JANUARY 3, 2013)
I wrote what I hoped would be a nice humorous post yesterday called “10 Things That Are Typical At An Autism House Party” and it got lots of nice responses & comments. Many were jealous that we live in a big metro area and have lots of other autism parents to hang out with…but almost all saw the humor in the situation.
But i got one anonymous comment that said this… (the spelling/grammar errors are all hers…however, i am fairly certain that English is not her first language, so let’s give her a pass on the spelling & grammar, ok?)
I was told about this blog by a friend, why because my nephew deal with asd(sister-n-law). The problem is he is 10 but his age level is 2. Now we have try hard to help his parents but his mother seem to think and act as if we owe her something,@ my child last b/day party her child ruin it for my child he torn her cake a part,he broke the X-box,in which she refuse to replace,he play with his spit that I don’t won’t wipe all over,he dig in his pants front & back,he dig in his nose and eat it but she want the family to make our kids play with him and let him eat with us and we can’t do it + he wear diapers and I’m not changing the diaper of a 10yr old young man and he’s not my child.(who would?)I’m not being mean just honest we think she expect to much from us, I here her whine abt we don’t know hard they have it or how the school better do something abt their child problem. This is not my fight. So now she is upset,mad because there was no invite to the holiday parties for her son. She have told us often that the school or the Drs. etc do not know him and don’t listen to them,I so want to ask her why do she keep taking him to that school and just do it all her-self. The fact is we can’t deal with him or please his parents I would like to know how much to you expect people to deal with ? he have spit on,bit,hit family members often and yes the the other children are scare of him and no we don’t give her advice all we do is protect our children and she get offended over everything,don’t ask her this or that,don’t say this or that.She call a family member stupid and it got ugly so now family avoid her always ask if they are coming to the family gathering if so most want attend and those that do just keep close watch of their children and the food ask her to take diapers outside that also offended her. Outside of leaving them alone all together we don’t know what to do. She also get mad when we talk abt us ladies going out to shop or a movie or just getting together like it’s our fault she can’t get a babysitter so when she’s around we can’t talk about doing fun things. How much is to much ?
Now as most autism parents tend to do, my first instinct was to get really defensive…and as most autism bloggers tend to do I immediately started to think about my rebuttal would be…should I write an angry response directly to her comment, or write an angry whole separate blog post about it…?
But then I read it again…and again…and again…
And you know what? If the picture she is painting is accurate… I kinda agree with her on a lot of levels. She might not have written it very eloquently…and I might not agree with everything she wrote… but a few things she wrote stuck with me…
How much do you expect people to deal with?
How much is too much?
The asd son in question is 10. From what she stated here…he sounds rather severe…or he was having a really rough day. He was nice enough to be invited to a typical kid’s bd party… and from the sounds of it he absolutely wrecked the joint!
Most typical parents that we know in our lives are extremely understanding, but if my asd kid bites family members, breaks an expensive xbox, tears a bd cake apart…I would NEVER expect to be ever invited back…And if we did, by some miracle get invited I’d probably NEVER go again anyway…
Out of embarrassment? Kinda, yeah, but also out of common decency.
I’ve written on here before that sometimes the wife and I will keep Kyle out of situations where we have a hunch he will have a horrible time. I covered that a lot in a post called “But He Was So Good When You Were Here Last Time”
And I wrote a post about birthday parties where I talked about how we used to get invited to typical kids bd parties when he was younger… but as he got older, we declined once or twice… and the invitations stopped coming… I wrote this in that birthday party post…
The same thing happened years back when Kyle stopped getting invited to his typical friends birthday parties. Before his diagnosis mom went to a Mommy and me class and made a lot of friends. And for a few years we were invited to all their kids parties. And for a few years when they are young and the parties still have a toddler theme (gymboree, etc) our ASD son could enjoy the party and not stick out like a sore thumb. But as the typical kids got older their parties got harder for Kyle to handle and he wouldn’t have a good time and therefore mom or dad had to be “on him” every second and therefore we wouldn’t have a good time either. So we’d decline a few invites and then we’d stop getting invited. And that is fine.
And Kyle’s parties stayed the same. For the first few years they were a mix of autism kid friends & typical kid friends. But as Kyle got older, his bd parties stayed the same (still a toddler theme) Gymboree or pool, pizza and cake. And I never wanted my friends with typical kids to force their kids to come to Kyle’s parties.
So now we are squarely in the place where all we are inviting to Kyles bd party are autism kids (ok let’s say special needs kids) and all the bd party invites we receive are from special needs kids. And that is great.
And I truly mean all that. We have been blessed to have great family & friends & a great support system around us… And I’ve written on here before how we rarely even run into mean people out in public …but there may come a day… when my Kyle is a teenager and weighs north of 100 pounds where he is gonna innocently destroy something TRULY expensive…or accidentally hit someone REALLY hard… and after that I won’t be insulted at all if we are NEVER invited back to that person’s home….even if it’s a close family member.
This autism mom that’s in question in the above comment? Her biggest mistake was not being on her kid LIKE WHITE ON RICE. My wife and I are on Kyle and are following him around at parties so that hopefully he can’t even get in striking distance of breaking an xbox or getting near the cake or striking another kid… I’m not saying it can’t happen…but if one of those things happened at a bd party we would make a QUICK exit so that the other stuff couldn’t happen.
And as for the anonymous commenter saying that this autism mom expects too much from her family… This one is kinda tough… but maybe she does expect too much from her family.
Maybe all of us autism parents, myself included, expect too much from our families. I think if I was a “typical” dad and went into a family member’s autism home (or had them over my home) I would be extremely concerned & compassionate & would bend over backwards to make them feel comfortable and make any accommodations to make things easier for them…
but once they left, I’d probably be “out of sight out of mind” I’d get bogged down in my own problems & issues which to the autism parents would seem absolutely minuscule. This is what happens to most family & friends I think…because when they are living in their own “shit”, whatever it may be…(my kid is failing spelling, my kid is 3 and not potty trained, my kid stutters a little) and it seems like a HUGE issue in their lives.
It IS a HUGE issue in their lives.
And their problems, as minuscule as they may be to us asd parents consumes all of their energy and brain power… and you are your situation are the furthest things from their minds…until they see you again… and see what your dealing with… and they think about how stressed they are over stupid stuff… and that’s when they say “I don’t know how you do it…”
Then they go home and forget all about and go back to their HUGE minuscule problems…
But that’s just life. There’s not much we can do about that.
Maybe as autism parents, we do expect way too much from the outside world. They are bogged down with what they feel are their own HUGE problems… and don’t think about autism until they see a news story about autism… or in April when their Facebook newsfeeds get inundated with autism awareness month crap… 🙂 Then they say “how do they do it” and then they move on with their huge problems…
And again… that’s just life. There’s not much we can do about that.
Bottom line here is. The boy mentioned above is 10 years old. He ruined his cousin’s birthday party. All the other kids in the family are frightened of the asd boy. That’s sad, but true…
And as the woman so eloquently stated…
How much to you expect people to deal with?
How much is too much?
What do you think? Am I way off base here???
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
98 People Replies to “Autism Parents: How much do you expect people to deal with? How much istoo much?”
Getting back to the core of this discussion enough is enough when you and your husband decide it is. Once you find your mate, settle down and have a child or children they become your "core" while anything outside of that is family. As a parent you are responsible for the safety, happiness and well being of your child regardless of what side of this argument you are on. If you find you are compromising your "core" and putting undue stress in your marriage to accommodate family than enough is enough. A lot of people get hung up on it as an "all or nothing" deal. That is not true. Discuss with your spouse what you guys can compromise at. This might not be one of the areas you can. But maybe you can help in other ways. For example one of you gives the sister a break for a few hours to get away, go shopping, see friends, take the sibling out etc. Some families can circle the wagons and rally together while others can not. No family member has the right to ask you and your spouse to place the needs of their child above your own…no matter which side of this argument you are on – period. If you are compromising your child's safety, happiness or well being or even your marriage than that is simply bad parenting. Yes compassion is needed but sometimes it's not your sacrifice to make. So enough is enough when you and your spouse agree and decide it is.
(Sorry if this is a repeat, I don't know if it went through)
"I was never of the mind that other people should be made to just accept DC’s behavior. Yes, if I am trying to manage the situation I can live without the stares and comments – but letting him do whatever he wants in the name of awareness, is not something I ever subscribed to. I do not believe that every behavior can or should be blamed on his autism – it is never used as an excuse. Letting him run around to other tables, throwing items or any other behavior that may have crept up when he was younger, just because he has autism, was not going to happen. I don’t expect other people in a restaurant, who are out to have a nice time for themselves, to have to make allowances for his behavior. In the past and for the most part, when he was younger, I’ve had to take him outside to calm down if it didn’t look like the situation could be managed inside or we’ve left places altogether. I agree that we need to raise awareness and acceptance, I do not agree that we have no regard for other people. To me, and this is my opinion only, that is not raising awareness about autism, but causing resentment. He has as much right to go anywhere and participate in anything as everyone else does and as I said, there were and still are times when he does get too loud or gets too anxious and yes, I do believe that some allowances should be made in the name of awareness, just as allowances should be made for young children that don’t necessarily have control of themselves out in public – we know all children will never be 100% well behaved in public, and we know that our children will not, either, but letting them go “hog-wild” – and calling it “awareness” – I just don’t get that."
I truly do get that it will never be a 50/50 scenario. I can live with that. But to expect us to be okay with a 90/10 scenario….sorry, IT IS JUST TOO MUCH. It is depressing, and I'd much rather let their child go outside and hug my kids and play and enjoy himself like he does than sit and listen to them vomit all their problems and never once ask how me or my family is doing!!!! I literally go home each time EXHAUSTED from the whole situation. I've become relieved when they don't come to things. And that saddens me because I love their child!!! I can handle being with him any day. The problem in my eyes is not him!
Also – he does have typical siblings and guess what – the mom informed me she's not letting them go to parties or friends houses or do sports since the special needs child can't do those things.
It makes her "feel guilty". WHAT?!
So let me get this right. The child who doesn't even know he's missing out on ANYTHING, is determining what the kids who *DO* know what they're missing out on can do ?!?!?! That's really messed up to me.
I once spoke with a friend who told me she has a family member w/ severe special needs who had to be put in a home. She said her childhood memories are filled with her mother being absolutely obsessed with the special needs child, and she therefore always felt her needs came last. There were more photos of that child, more time spent with them, obviously therapy & doc appts, etc. Now this typical person has grown up and is a quite sad adult who missed a LOT of love when they were young and did all that extra everything even help their special needs sibling??
NO. It didn't. Their condition has been unchanged for decades.
I know I sound bitter, mean, angry, apathetic and you prob think I just "don't get it". I may not ever understand what it's like to parent a child with severe special needs – but I do know what it's like to be made to feel guilty that I have typical kids & typical problems, and that I'm never doing enough to help my family w/ special needs child (either with my hands or with my $$ – oh yes that has come up too). I agreed with Suzy above because she had an excellent point — it would be SO much better if we spent our time with family just trying to enjoy our kids together (mine don't see their cousins often) and I will absolutely watch my own kids & I will even keep an eye out for theirs with needs; IF they would do the same and also just stop talking about what their life is like. It's been 10 years. We get it by now. We do!
I'm continuing my post from above, couldn't fit everything! Sorry!
I have a child with some anger issues that is going to be starting play therapy. I have another child with huge potential but is lazy in just about everything and makes me so worried for his future. I have stress at work, at home, in my marriage…blah blah blah. Everyone has a battle. I'm just barely keeping my head above water, so PLEASE parents with children who have special needs — it is NOT that other parents are judging you harshly or are unwilling to bend a little (our family does in fact make special arrangements for this child for parties)….it's just that when you are already juggling a million things yourself and then go to visit family and are basically being told, "Hey can you also watch my child with special needs; I'd like to get something to eat and chat with the adults for an hour"….is it unreasonable to say, "Sure I'll watch all these kids including yours, but then I'd like you to do the same for me so I can have an hour to chat with my parents who I NEVER get to see or spend time with anymore"?!?!!!?
Well, the answer I KNOW I will get is absolutely not because they "have their hands full" with just their 1. I know their life is far from fair, but is it fair to expect SO much help, SO much understanding and SO much change from your family and then never do anything in return for their kindness, and all they've done to research what your child is going through so they understand what's going on, etc etc etc. ?????
I can't tell you how many countless hours we've spent celebrating this child's victories (before and after diagnosis), and we are expected to not mention our children's accomplishments because well, this child will never have those accomplishments so it's like "throwing it in their faces" that we have "easy" typical children while they have a terrible battle to deal with. So year after year we sit at these functions listening to them discuss his therapy, his newest medication, what he's doing at school, what drama they are fighting with insurance, what teachers are or aren't doing right, etc etc….and when my parents start to ask us about our kids we get maybe 5 minutes of convo before it once again turns to them.
SUZY, I WISH MY FAMILY MEMBER HAD YOUR ATTITUDE!!! YOU TOUCHED ON SOMETHING ABOUT THESE PARENTS PLAYING THE VICTIM & MUNCHAUSEN SYNDROME…..BINGO!!!!
We have a family member with a child who has severe special needs. Thankfully, he's pretty sweet and has never hurt any of the little cousins. He does have a meltdown at every family function, we all know it just is what it is. It doesn't bother us or my kids in the least. It bothers the parents way more.
My problem, however, is with his parents. I KNOW and understand they deserve a chance to relax, so at family functions they want the other adults to be "on guard" so to speak. Well, unfortunately the grandparents are quite old now and could never just sprint down the driveway after the child, or even keep up with him down a hallway. So I DO think that's a lot to ask of elderly grandparents. As for the other adults, we all have children who are still pretty young and we have spent MANY holiday functions sticking to our little ones like glue so they aren't getting hurt, etc. My kids are typical but that doesn't mean my life is easy by far!!!! I was in a very deep, awful depression several years back and it would have been really, really awesome to have those family members help me out with my little ones so I could even just go take a 20 minute nap in a back bedroom, or even just have some adult convo without jumping up every 2 minutes…..but I didn't get that luxury.
I DON'T expect the other adults there or the elderly to help me with my typical kids. I know them better than anyone, also, so if they have meltdowns only I know what works. What I don't understand is, WHY does the parent with the special needs child expect me to help out and bend over backwards for their child when I can barely keep up with my own?!!? Now before everyone here gets defensive let me explain something. These family members want to come over, sit down, grab a drink, talk for a few hours, and since there are 1-2 adults outside with all the kids then I feel that's when they want to sit back and do NOTHING. Literally. I watched the mom actually go into a tirade one holiday because her child went inside alone and got into something they shouldn't have. She wanted to know where was everyone else, she was literally mad at all the adults who were all doing something with the OTHER kids when she was doing NOTHING! It wasn't like she was entertaining the other kids….noooo, that never is going on. So I'm expected to guard, entertain, help in any way NOT JUST my 4 kids but also hers?!!? I'm sorry, that IS expecting too much!!!!! I'm sorry for what they live with everyday but I am in total agreement with the Dad on this blog — we have our own shit we are dealing with too!!
I also hate when people mock others who do not speak English correctly or write it incorrectly. It is pretty apparent that English is her second language, meaning she knows 1 more language then most of you. Whether or not she speaks 2 languages or she just couldn't grammatically impress all of you. Isn't that still a form of bullying? Or is bullying only of a child with autism here? Kind of hypocritical if you ask me.
To the parent's of an Autistic Child who finds everything so unfair…My answer won't be very popular but I can't help but be honest here: I do have a child on the Severe end of Autism Spectrum, he's 11, he's still in a diaper and can get pretty out of hand, he can also be the sweetest little boy I could ever imagine. Fact is it doesn't change that he's MINE! I had him, I take full responsibility for him! HE IS MINE! He does not belong to his school, the state, my friends, or any of my extended family. Yes, I get very stressed, I cry a lot, I feel very alone at times…but as it was said everyone has their own things to deal with…I am so thankful I'm not having to watch him die or something even more awful…I actually thank heavens it's ONLY AUTISM…I've always wondered why of all disabilities diagnosed to this day…so many parents of Autistic children are so damn needy and expect so damn much. This is your child! It's that easy! Everyone did not make the decision to have your child…not one pregnancy is without risks…anything can happen…luckily my child only has autism…so I have to parent him a little more then my others…I don't even understand the concept of anyone owing me anything…it's just ridiculous and I'm sorry SELFISH…The anonymous reply was by a person protecting her child…lol…just like the sour attitude of the woman with an autistic child "protecting her child" or is she more or less protecting HERSELF…Demanding pity?!We want our children to be accepted…we want them treated equally…REALLY?? Or do we want the world to treat them "SPECIAL" lol…any child breaking up your house that is not yours probably won't be invited again…THE END…my son could careless about a party I avoid things that would make him feel awful and things that he could do to hurt anyone else…it's simply called RESPONSILBILTY for MY CHILD. The self pity is disgusting and I believe it used to be called Munchausen syndrome. Your child is dealing with a lot…maybe for a moment realize that and stop feeling so damn sorry for yourselves! Some parents need to just give it a break already let your child be a child. I absolutely respect Autism Daddy and his wife…you can see they let their son live and it doesn't consume them. They have it just as bad if not worse then most. Much respect to you sir.
PS: Maybe the reason your child isn't invited to parties or homes is because of you…maybe the self pity, victim attitude, constant talk of autism and how it effects you, etc…maybe it just isn't a desirable thing to be around. I know I can't stand it, even I need a break from chaos now and then…oh and other people's chaos are not welcome in my home…no matter what form it takes. Let people live already…we get it…you have it hard. Sorry?! Me too.
Playing devil's advocate, please consider this side of the coin: Maybe this is the straw that broke the camel's back. It might be that the aunt (and the other family) have attempted to offer help — maybe not the right kind but are well-meaning — and the aunt is just tired of the mom taking no action to correct any wrongs done by her child. With RARE exceptions, autistic children can be taught what is appropriate behavior in situations; and when they do not act appropriately, they should be removed from the situation until they are back under control. The same as a "normal" child. We cannot expect children to learn if we're not willing to teach them. Ignoring a child's behavior — special needs or "normal" — is not doing them any favors. They're going to have to learn how to interact in polite society, and what better way to do that than parents instructing them.
I am commenting as the aunt of an autistic child and the mother of a 'normal' child. My stepbrother and his wife expect too much I am afraid. My niece is 7 but is large for her age, she is violent and headbutts her younger sister, smashes her into doors and walls and never gets reprimanded. As such I cannot have her around my son, I cannot put him in danger of being hurt by an older child. They get angry with the school for not being equipped to deal with her but what do they expect? The school has limited resources and other children to educate, they do what they can for her but it is not enough. My stepbrother and his wife is in denial about the severity of her condition, they refuse to send her to a specialist school and she cannot cope where she is. She gets distressed and violent. Then they are upset when parents complain that she has hit and injured their children. If it was a normal child who injured their daughter they would complain soon enough. I have great sympathy for that Aunt. HER child's birthday was ruined and his toys destroyed, what an awful thing to happen to any child. Why is the ASD child more important than this child? Why is the ASD mother more important than the neurotypical child? I understand you have parenting pressures greater than ours but that doesn't mean ours are nonexistent or less important. We love our children as much as you love your ASD children, so why would you expect us to put your children above our own?
Instead of demanding that everyone revolves around your child, ask your family what they are comfortable dealing with. If you think something will be an issue explain first and give them a way to back out. Families love you, but they are human and don't owe you everything. If your first instinct is to be defensive then it is probably because you recognise hard truths in that post.
Heck I only wanted my dad to give my son a ride to school 3 times a week. You would think I was asking my dad for blood the way he acted. I had to cut my hours, just enough to take him to school. Now I work 1 day a week for 6 hours. My dad now takes my nephew 3 times a week to school 30 minutes away. ANYWAY yes I'm angry but oh well I at least my son isn't having a meltdown and isn't being treated like crap anymore. As for the watching over our kids. I use to think I was a weirdo making sure my son was ok at someone else's house. I was always told by whoever, let him be he's fine. I still follow him around. It's harder for me to trust other people with him then it is for me to trust him. With my family I know my son is a good boy but I'm afraid of the kinds of things my family would say to him. So we pretty much stay home.
I don't agree with everytHing she said. But I fault the mother too. My child is asd and parties are a stressful situation. Thank goodness we have very understanding friends and family. When it's not with all close friends and family we choose whether or not to attend careFully and also judge it on how his day is that day. I stay on both my asd and my non-asd child closely while out to make sure that they are respectful and minding mannors. To be able to quickly remove my autism child or correct my daughter to handle her situation differently. I was at a birthday party this weekend (mind you my child was having a good day) and got complimented by more than one person on all my children's behaviors and my parenting, (asd parents, you know this is an amazing, not to be taken lightly compliment). One of the women, I found out, was a special needs teacher. It has to do a lot with parenting. You shouldn't make people deal with more than what's reasonably necessary. It's not fair, not all are equipped to do our special jobs!
No support from friends or family, and I don't ask anyone for help. I expect too much from my spouse (don't mean to). I have my two kids with asd, by the hand, if needed. I also leave if there are any problems or don't go in the first place.
My wife introduced me to this page and this is the 1st one I've read. My boys (twins) are Autistic and have been since 2ish. I'm probably going against the grain here but I understand the family writer question. We do not take the boys out to "friends' houses, mostly because they don't have any friends and we limit family visits because of the Autism. Our families are great, they understand and know that a visit might be 2 hours or 10 minutes. The birthday parties they have been to have been family and the boys go and play on the stairs or run around the basement, while caring nothing for the party. I think compassion is great but only the parent of an Autistic truly understands what they are dealing with and should not expect others to fully grasp it. Thanks for your time Greg W.
If this account is accurate it sounds like the mom walks in to the party and lets her child go taking no responsibility for him and assuming that the family will take over for her. While I can understand wanting or needing a break you can't just expect people to take on your responsibilities just because they are family. It doesn't sound like There is good communication between family members. I would never walk into a party and let my child run wild ASD or NT. And would yake full responsibility of anything that happened. On the otherside my family is very understanding of my daughter and when together they try to help so I can sit and relax a bit more than normal.
I think that first and foremost it is my plight to create an environment that is safe for myself and others. With that said my nine year old was recently diagnosed with ASD the end of the last school year. I think that having a diagnosis sometimes makes me think that people should give us a break and stop making the assumptions that he is just a spoiled brat. I do hover and follow him when we go to parties because even though he is high functioning he still has major outbursts. I live in fear that he will break something or worse hurt someone badly. I do not think that it is other peoples responsibility to understand every aspect of autism and what we are going through how can they unless they live it. I think that making choices that keeps other children safe and keeps your child from feeling like a failure is very important.
There is such as lonely side to autism that people do not understand and I did not need a diagnosis to experience it first hand. I agree with the woman above only because if your child does something then it is your responsibility and not that of others. You can ask for understanding from others but you cannot ask from them to live in your world of autism if they do not have to. There will be those in life that will accept your child as they are even if those are few and far between.
Anonymous Sibling, I am sorry you feel deprived and neglected by your parents. I am sorry you no longer speak with them. I wonder why you even read this blog if you are "done with autism." That said, it sounds like you lack empathy and compassion. Without those qualities, you're going to alienate yourself from anyone that would want to be a part of your world. And one day, you might regret cutting off the only people that may have the capacity to love and accept you as you are.
As far as the post goes, I agree with Skye and a few commenters that some people were too eager to be Judgey McJudgersons. You don't know what this mom has tried. You don't know what it's like to have her child and to struggle with doctors and schools the way she apparently does. What has the family done to help? Are busy parties the only chance this mom ever gets to see her family? How much is too much to ask? Well, give examples of how much this aunt has gone out of her way to support her SIL and her nephew. I read her long, self-pitying rant and all I see is "autism is not my fight." Let's be honest then, aunt- you wish you could live in your able-ist privileged bubble and not have to reminded of autism. One of these days, you may need to have your diapers changed and I hope you'll reflect on your life of selfishness and wince.
Most autism parents ask WAY. TOO. MUCH. I know better than anyone, because my brother and his autism ruled my parents' home. He probably still does. I don't know, as I haven't had any contact with any of them for a decade. Fifteen years of neglect was enough.
While my friends were having slumber parties and dating boys, I was the one scraping my brother's nasty poo off the floor. I was never even allowed to have parties for him to ruin. Nor was I ever allowed to have expensive toys, because he would just break them. Lord knows he broke everything else I owned. My parents just gave me the "we all have to make sacrifices, so suck it up" speech.
I was just supposed to understand when they practically threw a party when he learned to sign for food, but "had" to miss my high school graduation, because nobody would pander to him there. They expected me to understand that they "couldn't" help with college because they spend every penny on another school, or another therapy, or another treatment, so, suck it up, little sister. They expect everyone to bend over backwards to accommodate him, and act SOOOO put upon if anyone dares complain that my brother is wrecking their house, or their movie, or their dining experience, never ONCE thinking that maybe other people don't deserve to be burdened by their problems. They're all just supposed to suck it up.
They really act like the world owes them, by virtue of their having made a HORRIBLE decision. And yes, it IS my parents' fault. They KNEW there was autism in my mother's family, and still chose to procreate. Their choice, their fault, their problem, their responsibility. Period. I guarantee I will not be having children, because I will not be responsible for bringing another burden into this world. I ran out of tokens years ago. I am DONE with autism.
And if you're one of those "suck it up" autism parents, I hope you know that your attitude is a bigger problem than your kids' autism. If that's how you feel, you don't deserve support, or compassion, because you're just a selfish jerk. So suck THAT up.
I just have to say I am so happy I found your page on Facebook. I have a seven year old daughter who has autism and when she was younger around 3-5 I use to take her to birthday parties and family functions constantly trying to please everyone else. My daughter would run into a quite room and sleep for hours, she loved playing alone, didn't want to participate in face painting, games anything.my family and friends who frustrate me terribly because it was always something. they would tell me stop running around after her sit and talk, i'll watch her go have a seat, oh no let her play.. meanwhile when she hangs up your phone during a call or breaks something its a whole different story. For a long time now I have grown with my daughter and I know now when a party is a good idea or a bad idea. My daughter has inspired me to stop, relax block everyone else out and only focus on my daughter and now my son. Patience and consistency when it comes to rules and discipline especially at parties is always helpful,it isn't easy but it can grow to be easier, now my daughter enjoys the party and enjoys playing with the other children.
I have two children with disabilities and it is very stressful to go to parties. My kids are touchy feely and sometimes other kids don't like that. So I have to watch them like a hawk also, but for other reasons too. Since they don't live at home, but come home every other weekend, sometimes I will switch weekends around to accommodate a party we have to go to. But I do expect more from my family members than other people. It may not be right, but it seems to me family should be more understanding.
I've read all the comments and there are familiarities galore… I have twin boys, 6 years old with autism. They are usually pretty good, now, but I still hate going to the family functions at other people's houses. They love staircases(which we don't have) and throwing things up and down to watch them bounce, like to test every door and run around exploring, so naturally, I have to chase them and sometimes they go in opposite directions which is a real pain in the ass. Lately we try to show up just when food is being served (or they start a little sooner than the others)so they have something to focus on right away, and then I'll take them somewhere to play. It is stressful for me, as I don't join in any conversations myself, rarely eat, and often feel like I am being rude because if someone does start talking to me I have my eyes and ears on them and usually have to excuse myself mid-sentence to stop something horrible that's about to happen. And often I've got all the other kids running up to me asking questions (which one's which?) while the other oblivious gobbling & chatting parents assume I like being the damned Babysitter or something and are not really watching their own kids. I'd rather not go at all but that is also considered RUDE and I know my boys, with practice, will get better about it. They are already much improved from how they once were.
Honestly, it sounds like most of you are relieved to have a story where a kid is "worse" than yours and y'all are just LOOOOOVING an excuse to be a typical, judgey parent just like all your cool friends. PLEASE. If a typical parent has NO IDEA how hard it is to take care of a child with ASD, you have NO IDEA how hard it is to take care of this particular child. The rules don't change. This woman's English is so bad we really have no idea what reality is, even if we ARE to take her comment at face value (which, as ASD parents, we should know is NOT reality. No matter what, this is a typical person's SKEWED PERCEPTION of a severely disabled boy.) He MAY have destroyed a cake and broken an Xbox. MAYBE. Newsflash: typical 10 year olds have been known to do that crap, too. Nothing this lady said was even particularly bad, save the biting. I don't believe for one second the mom expects her to change his diapers. And for all of you that are just appalled by the mother's REACTION to her child's behavior, even though you may be understanding about the child's behavior- that's how typical parents perceive us, guys. Sorry to burst your bubble. We ALWAYS seem like we just don't care enough and aren't willing to make amends for our children's behavior, because typical parents want us to walk around permanently apologetic for daring to bring our kiddos out in public. This woman is full of crap, and she needs to learn English. I wouldn't have gone there, except she expects her severely autistic nephew to just stop wearing diapers already, sooooo ENGLISH MOFO! DO YOU SPEAK IT?!
Since when is having english as a second language grounds for dismissing a persons opinion? THIS comment above is a perfect example of why so many ASD parents are given the stink eye. While my boy is near the center of our universe I don't expect him to be the center of yours or anyone elses. There is no such thing as t he pain olympics or the stress olypmics we have our kids to raise it is NOT the job of any other family member, yes help is wonderful and fully appreciated but expected? shit no.
I don't have a child with autism. I have a son with Down syndrome. We don't have these same types of issues. But, when I read this rant from this aunt, I have lots of questions. It seems to me she's writing after a lot of things have happened – nothing good.
I see your points about the things the mom may not be doing that she should, but I also wonder what it's like for her in this particular family. There were a couple of things that made me feel that she's never received any support from her family – the part about taking the diaper outside? So, maybe she just has given up. I also wonder if there are some sort of cultural differences going on.
I guess I just feel that, while it seems the mother is not being as responsible as one would expect any parent to be, I'd like to hear her side of it before passing anything that looks like judgement on her.
I would expect that family support would mean that everyone in the family would help protect the other kids and the xbox – give the mom a break. And maybe one of the moms would take an afternoon with the nephew and let the mom go on one of the shopping trips.
A few of the comments just make me feel like they have never given the mom any support and never plan to. I think that if that's who my family was, I would have stopped attending birthday parties long ago – not sure.
That was a good blog post – thank you for sharing … on both counts!
Honestly, we don't go to parties unless its for a close relative. When we do go, my husband and I have to watch our son like a hawk. It's so stressful and neither of us really enjoy ourselves. We are constantly running after our son that we don't have the time to have any conversations with the other guests. Its to much work. I'd rather stay home plus I don't think my son enjoys bd parties, he'd much rather be by himself. The only thing he does like is when they sing "happy B-day".
wow she should now her childs limets sounds like b day partys may not be best for him .she has to be reaspboble for his behavoir .i have autism an ld .an my mom would tell parents what to do to make sure i stay fouce at the party .hide the cake anything i may get over fouces on till that time ,it is her reaspobliy to pay for what her child broke an she cant be upset if other dont want there child to play with her .it sounds like he needs behavior therhy or something .i hsave q few friends who are on the severe end who dony act like that .i dont no if she thinking it ok for her kid to behave that way an ingore it but it not becuse this is what happing
Someone sent this blog to me because on in-laws. I read one comment about where was dad. Yeah I was trying to figure out where the brother played into this – why doesn't she make any mention of the dad. This made me a little weary about what the aunt was saying about her SIL – in-laws politics seems to play the part as well as the sense that there is some "refrigerator mom" stereotype. Believe me – when everyone found out about my sons dx from my husband's side of the family – their first inclination was to question my part in it or even blame me saying it was my fault. My son was 4 and could not deal with walking on sand – had the hardest time doing it and the OT explained that it was a sensory reaction because of the unsteady/shifting ground and/or heat. My MIL visited and we went to the park. I tried warning her about the sand and she said it was "hogwash" and tried taking him to the slide in the middle of the sand. When he began to cry, she told me that it was because I was spoiling him; he was screaming "up" (one of the few words he could speak) and begging for me to pick him up and I ignored her and took him back to the pavement and set him down and he stopped crying. I didnt want to escalate the situation and lecture her and talked to my husband to try to enlighten her again about his sensory needs. Maybe if it came from my MIL's own son she'd listen. He tried talking to my MIL about our son's OT needs to which she responded by saying I was being over sensitive and completely ignored the education about sensory differences in ASD. Later she said that our son had ASD because I worked 13 hour shifts while I was pregnant. It didn't help that I quit my job for our son's therapies and despite my husband defending our choice in me becoming a SAHM, she openly thought I must spend my day lounging around. I figured if I was working my job again – I'd probably be blamed for not being there and causing my son's ASD and knew nothing would please this woman. I was damned if I do and damned if I don't. We got into a huge argument before she left – just overwhelmed with her negativity and judgment but my husband stood by me. We haven't seen her since. Over the years – my husband hates hearing how she visits his sister and spoils his niece and nephews with $100 gifts on bdays, Xmas, valentines – even Halloween and she's forgotten our son's bday and this past Xmas she sent him a teddy bear. We don't talk to her but my husband's sister confronted my MIL about the gifts and visits and she said, "Well, he doesn't know the difference!" I really hate my MIL.
Hi I just really want to say, I truly agree with you about MIL'S and it isn't easy what so ever, you handled everything maturely and I admire that. I often have a hard time with explaining my daughter's needs to certain family members and it is extremely frustrating. Thank you for showing me it isn't just me 🙂
I mean the aunt sounds ignorant and low class, not the mom!!!!
I am actually relieved (in a sad way) that there are others who have family members who aren't loving toward their ASD children, because I felt like the only one. My son has autism, and while some family members and friends have taken the time to get to know him, and are understanding and loving toward him, there are others (one in particular)who acts like it is the hugest inconvenience to make any sort of accomodation for him. She has excluded him from her child's birthday parties, even though we include her child at his. I don't understand it at all, and it hurts tremendously. But I try to remember that he has family (and family friends) who are wonderful to him, loving, accomodating, and with whom he will always be welcome. My husband and I watch him like a hawk when we are at other peoples homes. I wanted to cheer when I read one of the above posts about how it's usually the neurotpical kids who are making the messes and destroying things because we are on our kids like white on rice, while they are socializing and ignoring their kids. It's so ironic, isn't it. I agree that the mother this "lovely aunt" is talking about sounds very overwhelmed, and it doesn't sound like this aunt gives a crap, just that it's too much of an inconvenience for her to deal with him probably like the 1-2 times a year she sees him. And let's face it-she sounds ignorant and low class.
You hit the nail on the head perfectly. There are two issues here respect for the family members and respect for the asd child frankly neither of those were served. By forcing an asd child into a zone they are not equipped or able to deal with you have shown a great dis-service to them and disrespected the family by allowing things to get out of control. I understand sometimes things spiral pretty fast but I am all about 'sticking to my son like white on rice' and once the red flags go up we are in damage control mode running for the hills. I don't ever want to have my child in a situation where others don't want to be around him because I have left him in a situation he can't cope with. Yes others should be understanding but lets serve the child first by keeping them in the safe zones with respectful challenges not a free for all that sets them up to fail.
I have to agree with everything you say. Maybe because I have two neurotypical kids first and then a child with autism, or maybe because I am old enough to realise that the world isn't black and white. I also agree that the Mom of the child with ASD is demanding too much understanding and tolerance while she lies back to accept pity. I wouldn't want my kid's parties or special events ruined by an out of control kid wether he had special needs or not if the parent was sitting idle with exasperated defeat written all over her face. I also think that many parents of kids with different needs expect too much without giving in return-it isn't parent's of neurotypical kid's fault that we have high needs kids on our hands.
In my own personal experience I find the more accomodating and proactive you are to your friend's the more accepting and accomodating they are with you.
Maybe the mom of the 10 year old is in a pity mode, a depression of sorts, and compassion is the key to her healing-but at what cost.
Ultimately I think it is a two way street and just because I (as a parent of a kid with relatively severe ASD) shouldn't demand understanding when I am not being empathetic to their situation.
I have had more compassion and understanding from friends than I have from some family members. Some are great, and there are some who blatantly igmore him. It is truly sad. I would never expect my family or friends to put up with him breaking things at their house without replacing it, but I do expect a little compassion and understanding and heck, to even acknowledge or say hello to my child and ask him to a birthday party, we may turn down the invitation but it hurts like hell no to be included, especially from a family memeber. Some people act like it kills them to give any support, and others are amazing. Just depends on the person…I think it's very true that it says a lot about someone's character the way they treat those who can do nothing for them. We don't know the whole story here, and this aunt who wrote in doesn't sound like the most educated articulate person on the planet.
For starters, I'm a dad of a low functioning aut son.
Was asked once, by a fellow dad of an aut child, if I knew of a certain fable. The fable runs:
A Pig and a Chicken are walking down the road. The Chicken says, "Hey Pig, I was thinking we should open a restaurant!". Pig replies, "Hm, maybe, what would we call it?". The Chicken responds, "How about 'ham-n-eggs'?". The Pig thinks for a moment and says, "No thanks. I'd be committed, but you'd only be involved!"
Parents who are committed. Parents who are only involved.
Being committed, to an aut child, requires erasing everything you thought you knew about life and really stating anew. Around every turn there's a challenge and battle. Also, you can find in every corner small signs of progress and maybe even hope.
Before I'm judgemental of other parents, I always think about the pig.
I wanted to say something different, than other commenters. You have to always consider the person as an individual. Not every family member is accomodating, or compassionate. In any situation…take autism out of the equation. The person who wrote the comment may not have qualities that would make a relationship with an autism family work. Also just because you give birth doesn't mean you have good parenting qualities, or become a good person. We don't know what is really going on in this situation, but always consider the individuals you are dealing with.
"A child needs your love the most when they seem to deserve it least." This is what I would tell the aunt. Like other comments – this is a very one-sided story and we don't know if the mom is really oblivious to her son's needs, can afford to replace the Xbox versus refusing to pay for it and how educated the aunt is on autism. I just shut down when I read how the aunt refuses to change her nephew's diaper, "Who would?" she wrote. Well, actually, no one would expect to change a 10 year old's diaper, but this is Autism and it happens and who would change a 10 year old's diaper – the mom does! And she has been doing it everyday for 10 years. I just see a real lack of compassion on the aunt's part and she already answered the question herself – she doesn't see that she or her family should be expected of anything. I mean, the aunt is very vocal about his behaviors being a real imposition and that they don't know what to do and don't want to deal with it – can she imagine what her sister has been going through for the past 10 years? Also, I really got peeved that while the aunt is frustrated, saying that it's not her problem if the mom can't find a babysitter or has problems with the school -the aunt readily admits that she can't handle her nephew – that should be example enough that the mom probably has a very difficult time finding others who do understand her son and care for him outside of her family. Being an ASD parent, it really is hard not to identify with the mom, but as for the mom asking her son to be included – that makes me feel like she's probably very isolated and desperate cause of course, because I've been there – as a parent – wanting and praying that our kids to be able to play with other kids and have friends. Sure there were ways to handle things better on the mom's part, but I think that it speaks volumes of the amount of frustration she herself has gone through, and just like the quote, "A child needs our love the most when they seem to deserve it least," I think that extends to family members as well. I don't know, I would also tell this aunt – what if tomorrow, God forbid but, your child gets into an accident and becomes just as disabled as her nephew – what would she expect from her family? Compassion to start.
Some people just don't have the mental or physical capacity to manage an asd child. Not everyone can be a warrior mom. Seems both sides are doing so little to help the child – they seem more worried about themselves. It's definitely a rough situation. Maybe the family should be a little more honest with the mom – sure, the mom would be hurt but not as hurt as them excluding her and talking behind her back.
its cool to have a child in the family that doesn't have autism. then it all kinda gets into perspective. typical kids do sometimes get violent, fall on the floor in an ugly tantrum and ruin expensive property too… perhaps not as often, but it happens. do we expect to be invited again if that happened to a 'normal' kid who just lost it? do we try to make amends and fix the damage or make it up to those who suffered? I expect from others pretty much the same when it comes to my kids – with or without autism. I expect adults to be adults.
And I guess I expect more from my family than from friends, and more from friends than from strangers on a bus. I expect my mom to mind my feelings and not use the word 'retard' thank you very much. I expect my close friends who know about autism to notice the progress and rejoice with me and pat me on a shoulder when I had a rough day. I do expect strangers would keep to themselves their valuable opinion about my parenting when my child is screaming on the floor – no matter if the one on the floor has autism or not.
just a few days ago we were at a new years celebration with a few other families with kids – two out of three of my kids had started crying and demanding to leave this instant, spoiling everyone's fun, not responding to any words of reason etc.. only one of those two has autism. I left the party with the two of them, my husband and daughter stayed behind and tried hard to have fun and make sure other kids, moms and dads didn't mind our 'problem'. most of the ppl at the party weren't close friends. I don't care what they thought of me as a parent, I just hope they had a good time after we left.
as for 'how much is too much'.. same rule of thumb – what goes for a typical kid also goes for autistic. if you and your special needs kid come to a party to have fun – have it and let others have fun too. if you want people to be out and about making your autistic kid's presence at their party as great as possible, be prepared to make an effort and do your part of the work, so they can have a great party as well. It doesn't just work one way, its always a two way street.
White on rice indeed:-) how often do you feel exhausted after a family event because you have been on your kids tail every second? If my child broke something I would replace it but perhaps this family like many others would have difficultly replacing an expensive item like an XBOX but surely some arrangement could be made. The one line that sticks with me though is what this lady says about her nephew still being in diapers and asking would you change a 10yr old? Errr yes if he was my nephew, it might not be nice but he's my nephew and I love him and his parents so I would deal with it (have coped with worse in the past) I won't excuse the parents if they dont remove the child from situations where he is overwhelmed and is likely to damage things or people but it does sound as though the wider family could be more understanding/helpful.
Like many of the commenters here, I have mixed feelings. If things really were as she describes them, then the mother should have either decided that he shouldn't go to the party or kept better control of her son. She should also pay for that X-box. On the other hand, this woman doesn't have much compassion for his mother. "This is not my fight," sounds a little like "Not my problem – why should I give a damn about you and your son!" When her sister-in-law expressed that she was not happy with the school or the doctors she wanted "to ask her why do she keep taking him to that school and just do it all her-self!" This comment is positively mean-spirited and hateful. If her son had cancer and this boy's mother felt the doctor was not taking his condition seriously would this woman ask her why she didn't stop going to the doctor and just do surgery on the cancerous tumor herself?
So in answer to the question "What do you expect?" I'd say, show a little compassion and understanding. If you can't take him for a couple of hours at a party, imagine what it's like to live with 24/7. Get down on your knees and be grateful that it is not your fight instead of disdainfully acting like you are too good for this to ever happen to you. Make your expectations clear so that she knows what is expected and can decide whether or not to attend. Offer to listen to her problems without judgement. Finally, I find it interesting that she writes about this as if it is only her sister-in-laws son. Is it not her brother's son? Does he not share equal responsibility for this child's behavior? Or is it just easier to blame the evil sister in law!
Totally agree with you. My problem today was just the opposite. A friend asked me to watch her two year old boy all day while she took her parents sight seeing in Seattle. My son does not do well when he is here at our home. At 5 years old our son STILL does not understand sharing his toys. I end up putting him in a time out every 5 minutes for throwing or grabbing and then feeling bad that he's miserable the whole time. So I told my friend that while a couple hours is doable (I've done it before) an all day thing is a definitive no. I have dealt with enough over the years on my own and am finally at a place where I can manage things well and our days are mostly peaceful. I don't feel I should be expected to take on any more than I have to and I would never ask anyone to take on my load. Other than 2-3 hours from my mother on our Anniversary (with help from our teenager) or an occasional night out while my teenager babysits (because he knows the ropes and our youngest is comfortable with him) I have refused to put anyone on the spot in regards to watching our son. (Not to be a martyr but I remember my limits before our son was born and I wouldn't ask anyone to jump into this without the years of fine tuning we've had to understand and accomodate him) Just taking him over to a friend or families house can be exhausting at times and although I hope for some allowance for his odd behaviors I would never allow him to ruin someone's party or disrupt someone else's peace. I'd leave. The mother of this autistic boy is clearly overwhelmed and likely blinded by depression or bitterness from the hand dealt to her. She deserves to be supported lovingly but NOT enabled to the point of feeling she is owed something. At some point in our Autism experience we have to decide to either swallow our pain or let the pain swallow us. And there's only one right answer to that one. I wish her the best.
I am a parent of two kids on the spectrum and I have a similar situation where I teach. We have a new (as in, started this school year) autism program within a private school for kids with other challenges. The school's ages range from around third grade to high school. Every year the school gets passes to go skiing and, while most of the "other" kids go, there are a few who are just plain not allowed.
We got word that kids from the ASD program would not be allowed to go skiing, and that we would have to find other activities during the winter (this is Vermont; what else is there?). At first we teachers were miffed. "How could they segregate and discriminate against OUR kids?" It seemed like such an injustice. But, as many things are, this was a bit of a misunderstanding. True, our kids were not invited to the first couple of rounds of skiing, but they will all be integrated at some point. We were asked for patience; observers in the school noticed how our kids can get (we all know; I don't have to explain). We're a new program and not everyone is sure about how our guys will do in that kind of an environment (buses, snow suits, skis, chairlifts, crowds, speed, directions, safety…etc.).
After several discussions, a few temper tantrums and some reassurance from our Principal, we understand why they need some integration. We as teachers expect that everyone should accept our ASD kids under all circumstances and in no uncertain terms. Looking in from the outside, I can see how this just isn't realistic…or fair.
WOW, after reading everyone's comments I feel so fortunate ! My son is ASD/ADD/Sensory Issues. His "thing" is drawling. So if he can be comfortable enough to drawl he will. Family situations are awesome because everyone has been around Josh his whole life,some situations I will choose not to take him. Too much noise,action etc. He sometimes will remove himself and find a quiet place to drawl or play on his gameboy. BUT it wasn't always like this, he's destroyed a cake on Thanksgiving,he's peed behind the toilet, not in it, he's pinched his cousins, he popped a squishy ball and the stuff inside stained my mom and dads walls and carpet,he did things we had to watch for and control.Till this day all desserts go in the garage fridge till we need them. We ask, do you need to potty, sit down please, when he's ready to go we go. I bring snacks, drinks, toys etc. I'm divorced and had full custody of my sons when they were 4 and 8. Is it hard, HELL YEAH ! BUT it sounds like the mother isn't doing right by her son, white on rice, proactive, maybe changing doctors or finding a behavior specialist? Admitting there is a problem ? I'm not judging but my son was hell on wheels for a while and I was spinning like the Tasmanian Devil to keep up ! I think I was burnt out and maybe even mad. But I learned what to do. We all have key things that are kids don't like, won't tolerate,we know we won't be sitting down and kicking back at a function if there is no support.Your kid leaves the room, you follow !! Should her family be more supportive, yes BUT after reading it, maybe they can't help. Some people can not handle it, period. My ex takes Josh for a couple of hours on Sunday and a couple of hours during the holidays, he can't handle it. As parents we need help, whether single or couples, I have 2 dear friends that would help me in a heartbeat, I have my family. BUT don't we all have a checklist, every knows my son will eat when hes ready, he doesn't like to share his paper and certain music makes him cry. He takes his clothes off when he gets hot or the tags bother him etc.He will only eat certain foods, and stinkbugs make him scream. I think the Aunt hasn't been taught anything and her tolerance is nill. It almost sounded like "He needs his ass busted" kinda thing. The more I read it I was sad, sad for the boy who needs guidance, sad for the mother who needs help and sad for the family that is missing out.
After reading the post I too started on the defensive but as you think about it then how much is too much?
I have multiple children with ASD at all different levels., when our first child was diagnosed we had an issue at a pub coz they didn't like her dancing on the dance floor whilst people were eating, other diners weren't phased however it was blocking a clear walkway to the bar which the owners weren't fond of so we left, pinning her to chair screaming wasn't going to be any nicer for anyone especailly our daughter. After that moment we spoke and attempted to educate family about autism. We told them, to go ahead with all their celebrations as they normally would but have some respect if we decline and all stay home or part of the family goes. We don't expect family to bend over backwards for our needs and we would never expect our kids cousins to have certain types of parties to accommodate to our childs needs, all we have ever asked (although some do seem to forget) is to not be offended if we don't go and respect we need to do what we need to do to have happy children. As they are growing up we can stretch and do more socialising in little bits and with some family members going out, we are no where near the entire family going out but hopefully in time… — yes she should replace the broken items, if it was my child I would at least offer, however having said that if I'd prewarned them 'please put your xbox away before we come' and they don't have the courtesy to try to accommodate to a minor request like that then I'd probably not… (the joys of not knowing the full story!)
The old adage of "My right to swing my fist ends where your nose begins." applies here, IMHO. My mild-to-moderate happy, very hyper bouncy flappy stimmy 9 year old son has the same right to be anywhere and everywhere in public and in private as any other kid. All rights have related responsibilities, however, so if hubby and I are to push for that right as his parents/advocates, then it is our job to make sure his presence doesn't ruin an event, JUST as if he were a typical child. If a typical child is being a destructive pain in the rear, the parent should fix the situation if possible and apologize at a minimum. If my child with autism is being a pain, the same logic applies. Anything he breaks, we fix or replace, that's just common courtesy. His delays are not an excuse for us to slack off when it comes to acceptable behavior. As AD says, we are on kiddo like white on rice. No nose-picking and smearing, no grabbing other people's food, etc. We wouldn't let a NT kiddo do it, so why would we be any different with a non-NT child especially when the target behaviors are within his capability? Our friends and family understand that there are events like weddings that we don't attend with kiddo, and they know why. I think they appreciate the honesty of "Thanks for the invite but that's not a good risk for us to attend as a family." and then send a card with $. We did have to take him to my grandfather's funeral as there was no one to watch him for a full 24 hours, but thanks to the almighty iPad and headphones and the church Cry Room, kiddo was happy and behaved fabulously . As others have said, we always take food, toys, bribery devices and have an exit plan. The more places we try, the more places he learns to tolerate. It's a carefully-planned process, though. Also, the thing that has helped make this work is to only associate with those who care about our kid, whether family, friends or professionals. If friends or family members didn't want to play nice or were judgey or rude, then see ya! I wouldn't bother with them at this stage – there's no emotional energy left over at the end of the day to care what non-productive people think, say or roll their eyes about. May seem bitchy, but hey, in the special needs world, we have bigger fish to fry 🙂 We have some friends from the before-child days whose kids aren't comfortable around our son, and that's understandable because he can be unpredictable. They aren't deliberately rude or mean to him – the kids just don't know what to do. I answer the other kids' questions and thank them when they try to include our son, but I don't expect them to change everything they do. Civil behavior is what I require from NT kids towards my son, and he is required to show the same in return. Uncivil behavior towards my son gets the offending child marched straightway to their parent, btw. We do tend to have more playdates in the local special-needs community though – I think we have better wine!
He sounds severe. And it sounds like the mother of this child is torn up, tired, and angry. Full of blame for everyone else..the school, her family, ect. I feel bad for the asd boy. It's not his fault. And his parents should know better than to bring him into a situation he can't handle. It's not fair to anyone involved, but especially him. If we see any HINT of my daughter going over the edge, we try a break in a quiet space. If that doesn't work, we usually bring 2 cars, and one of us will take her home (usually my husband). Should he be hidden? Absolutely not. Should his mother know when it's time to go home. Yes. I also feel the family could be a lot more understanding. While allowing things to get so out of control was wrong on the part of this Mom, they have NO clue what she must deal with. Every. God. Damned. Day. Of course she's angry, and doesn't want to hear about your fun niight out. She doesn't get a break. She can't breath. She probably doesn't take care of herself, because all of her energy goes into dealing with her son. She most likely can't remember the last time she went out, laughed, had a good time. How about this? SOme one from the family give her a break? Deal with, for just an hour or two, what she deals with 24/7. Then see if you don't have a little empathy. And see how much better she would be after a little respite. She is probably unaware of resources for help and support, and that's sad. No wonder she can't help her son.
While I feel it was wrong of her to let it go to that point. And she should've high tailed for the door, the first sign he was out of control. If she can't afford to pay for a new xbox, then she should offer something…anything…towards a new one (including an apology) in good faith. This is just a very sad situation all around. And the one who suffers the most is the child.
I agree with you and disagree with the aunt! As parents, it is our job to parent.
The anonymous aunt– I get that she's angry because the party was "ruined" and well it does sound pretty bad right? But I think she should remember she's that little boy's aunt. Isn't it her job to love and support him no matter what? I don't think anyone has ever said, "it's my job as his aunt to love and support unless his autism becomes more than I can handle". Because that sounds kinda sh#tty, ya know? My sister & sister in law are great with my kids. My sis may get frustrated during outings, but she loves him and she would never say I'm not taking him out anymore. That aunt needs a time out and needs to focus on what she can do to make it go better- maybe they need to educate the other kids about what autism is and isn't. It sounds like the aunt needs more awareness as well. Maybe she can just learn to deal with the hands in the pants, saliva, and snot. All kids go through those phases, some kids just never outgrow it & literally can't, and you know that has to be ok because it just is! However, I would have been mortified if my son had been that out of my control. Because if my son had done all of what was described, then I failed to parent my child. And that is just plain rude, diagnosis notwithstanding.
I usually just read your posts and do not write but like many of you I feel mad and sad. I think the mother is being immature and not working harder to learn how she can improve her sons life. Lets be honest he may never advance to an adult maturity level, but you won't know that until you have exhausted every avenue on helping him improve and grow. I diagnosed my son at 16 months and from the moment of confirmation(18 months) I have done and tried therapies, schools, medications, you name it. I finally took matters into my own hands and home school him now. He is high functioning so I am fortunate to be able to do that.
This mother is not taking responsibility for her child's actions. If any of my kids(typical or not) broke or hurt someone I would be on them so fast and the broken item would be replaced and if possible an apology offered.
With that being said, I wonder if the mother had not taken any actions to prevent problems or address them. If she keeps letting her sons actions cause problems the family might be upset she never tries. My family has been supportive but some don't get it totally because when you look at my Joseph he looks normal. How could someone with Autism look normal, that attitude blows my mind. We will never know for sure if she is irresponsible or the women who wrote is being ignorant and unsupportive. I would hope an pray family of all people will support you no matter what. We all know that not all people think like we do. Some are just worried about what happens to them and not how they can help a women who is obviously so beyond tired. She doesn't know her rights and things she has available to her like respite care or even disability which might help hire some help for her. I hope someone close by her reads this and can offer some advice and help to get this whole family back on track. I am praying for her and her family that they find the peace and understanding to right this wrong.
I, too, want to get immediately defensive. But, I kept reading. I agree, the mom should have been keeping a better eye on her child. But there are a few things in that response that struck a chord with me..He sounds like he is more on the severe side since he is 10 and still in diapers. My question to that family would be, if that child had an obvious PHYSICAL disability and needed to wear diapers at 10, would there be as much of an issue? I think that the mom SHOULD pay to replace the XBOX, what was she doing while her child was destroying this? I think, personally, she is asking too much of family/friends. What most of us want is just a tad more understanding than what we get. We go to family parties and whatnot ,no matter what but we always bring something for my ASD son to do (tablet, kindle, ds, ipod) something to "help" keep him from being overstimulated with all the people and activities..Also, we tend not hang around too long, that way it doesn't give him a chance to act out. Now, that's not saying he doesn't have bad days or moments where I'm completely embarrassed but NT kids also have bad days too.. So to conclude my thoughts here, I think that there could be a little give from both sides. The mom definitely should be on top of her child more but I also feel as if the rest of the family could be a tad more understanding..
I think I do expect to much from people. My son is 5 and has asd and I expect all people not just family members to be understanding and that is just not the case. People who don't go through asd with the rest of us just don't understand what a day or hour is like in our world (so to speak). Some family members try to understand by asking questions but until you actually watch him for a couple days you won't get it. My mom watched my son for 4 days while I was in the hospital having my son in october and by the 3rd day she was ready for me to come home. Even when I came home I still had to go back and forth to the hospital because my son had to stay in the NICu. My husband had to stay home with him while I spent 2 days in the hospital with the baby and going back and forth. She refuses to watch him anymore because he pushed her out of our house when I got home from hospital. He still does it when he is mad because he has to come inside but I think it is because he thinks I am leaving. Anyway I am getting off topic a little. So to answer your question I do expect to much from people, family members or not.
What a load of crap! I am going to get defensive because the ASD mother clearly needs more support. How do we know she wasnt all over the kid and anonymous just failed to mention/notice? Or maybe the mother sat down for a split second because kiddo was having a good moment, then BAM he wasnt! Maybe someone had said to the mother 'you sit down I'll watch him for a while' and then he broke the game. Maybe there were other kids in the room who may have broken it, since when has a 'typical' child been 100% innocent. It was a cake for godsake – if it were a 'normal' kid that wrecked it, they'd get grounded for a week and in 12 months everyone would be laughing about it.
I can not believe I am reading post after post from ASD parents judging another parent. You all mostly acknowledge other parents just dont 'get it' with your ASD child, maybe this person also just doesnt get it, the writing suggests they think the parent should control the child more – like that is possible, if we could control ASD wouldnt we make the ASD behaviours just stop? As if none of you have had that moment no matter how closely you watch kiddo they still manage to do an antisocial behaviour.
That mother and child is the anony's family – suck it up sunshine- why should there be a limit on what you are willing do put up with? There are many worse situtations in this world that families have to endure that they dont know of up front, they adapt, they support, they pull together and get through it. Before anonymous starts throwing stones perhaps he/she should wait to see what happens in their perfect world,no-one knows what is around the corner and what support you may need from your family – I bet he/she would hate it if in their time of need the family places 'limits' on how much support they would give.
Yeeeah, and the whole Xbox thing seems extremely fishy to me. It sounds like it ended up broken at a party where there were several kids and limited supervision. I am NOT replacing an Xbox I'm not sure my kid broke. I don't know that I would replace an Xbox my kid definitely accidentally broke. I don't take on some sort of liability because I accepted a party invitation, y0. What are you doing with your Xbox out with a bunch of cousins who can't be trusted? Sounds like a good lesson for the family, honestly. Personal responsibility goes both ways, no?
Well said everyone. I agree. My daughter is in her twenties, been there, done that. Would like to respond with my personal experiences but I don't have the emotional energy. One thing i wondered about anonymous' post, where is the the father, they only mention the sister in law. I feel for this woman as her son is definitely high needs.
Whoever anonymous really is, this person lacks compassion and empathy for another's plight and I too question what would they expect if it was their child.
Great point here Anon!
" I have had the experience of being white on rice at a party with my ASD child and I end up cleaning up after the typical kids while their parents are partying in another room. I think that type of thing doesn't get recognized nearly as often as the undesirable behavior of the ASD kids."
I cannot tell you how often I end up "babysitting" all the NT kids because I am there keeping an eye on my daughter (Age 6 Autism). One summer the new neighbors across the street would just send there kids out without supervision leaving me feeling obligated to keep an eye on them because they were too little to be out alone.
Good points made here! I have had the experience of being white on rice at a party with my ASD child and I end up cleaning up after the typical kids while their parents are partying in another room. I think that type of thing doesn't get recognized nearly as often as the undesirable behavior of the ASD kids.
THANK YOU! I was defensive as well. I just wanted to give another point of view – being a parent to both an ASD child and a typical child having had a "birthday party ruined". Honestly, I got over it and it wasn't until this blog post that the memory was rehashed. At my son's typical birthday party, we had both ASD kids and typical kids and there was a definite difference in parenting styles and attitudes. There were toys thrown over the fence of our yard, people's heads used as targets for basketballs and soccerballs, kids searching for sharp objects to poke and deflate the bouncehouse we rented, and a birthday cake repeatedly poked – and all these antics – were done by the typical kids. What really angered me about the whole fiasco was that the typical parents automatically assumed that the yelling, "Don't throw the stuffed animals over the fence!" were to address one of the ASD kids. The ASD parents, were hawks, trying their best to prevent any trouble while the typical parents just plainly ignored their kids, being too busy to gossip and enjoy cocktails. One ASD child had an accident and the typical parents were open with their disgust and quick to offer parenting advice, including spanking the child. Please! The irony of the situation – despite the ASD parents later being vocal about their distaste for those particular typical parents and their kids, I still gave those typical families second chances cause my kids are friends with them, I tried to figure – hey maybe they really needed a break to enjoy adult time as much as I'd like to, but these families are NOT related to us but I still felt compelled to try and bridge the relationships. I'm not saying that every typical parent and every typical child is like that, but we extend a lot more patience and compassion than most typical families do.
As a para-educator and friend of many autism children, I would have to say that people should only expect what people can handle. I have been around the extreme and the not extreme. There are some people that should not be expected to be around autistic children at all, they are just not equipped with the patient frame of mind that is needed for this and cannot show autistic children any form of love or respect. I also think a caregiver should be completely on top of their child, it is their responsibility to keep the child safe. Whose to say that the child would not have hit another child and then beat up, not being able to defend himself. This whole situation she described seemed unsafe, not only for the autistic child but also the other children at the party. A lose-lose for all involved, bummer, especially for the child who is obviously misunderstood 🙁
Wow. I am an Autism Dad too…and the father of my son's neurotypical twin sister. I kind of live both sides of this everyday. Kind of. I think I could write half a novel on this post if I wasn't typing this with my thumb on an iPhone. I will say briefly that I agree with your assessment for the most part….and thank you for sharing your life.
Well, I think families choose to deal with some things and not others. For example, when a family member attempted suicide, everyone knew that the right thing to do was to give him a fresh start in life. When another family member had premature triplets, everyone knew that the right thing to do was to support the parents with meals, child care, etc., and that continued until the triplets were 4 years old! Somehow those crises were easier to cope with than our son's autism, because there are no obvious answers -it's been 11 years, and we spend every holiday and birthday alone with our kids. We have very little contact of any kind with our families. Our son asks why these people whom he remembers aren't involved. When our son wanted to learn how to use the phone, I told him to start calling his 12 aunts and uncles. The results were hilarious and poignant. But they still don't visit, write or call.
I've been the mom of the typical kid getting shoved, and I've been the mom of the ASD kid doing the shoving. The latter is much more difficult. We recently decided to have a separate Christmas from my in-laws because my son was pushing his cousin. My husband and I could never relax, and my SIL would shriek every time my kid went anywhere near hers. The stress became unbearable. We're hoping that staying away for the time being will do the trick. Maybe the meds and all the extra therapy will kick in soon and we can be a family again–without resentment. Here's hoping!
Oh, and by the way–the aunt's writing seems to indicate that she's an English language learner. I wouldn't jump to conclusions about a lack of education there.
I'm from Houston. I recognise her dialect. But, the main area she lacks education in is Autism.
My immediate family learned about autism. The didn't stick around, but that was due to intolerance of stinking andnoise – not to lack to of knowledge.
All i am going to say is don't judge until you have walked in their shoes. The Aunt has obviously never even attempted to. Did anyone bother to step in and help her? Sure doesn't sound like it. I don't expect the much from the general public but friends and family, yes i do. Where i come from you don't turn your back on your family even when its hard. You help each other and you don't give up. But then again that is a problem with this world. Everything is disposable, friends family children marriages. Things get messy just walk away.
All i am going to say is don't judge until you have walked in their shoes. The Aunt has obviously never even attempted to. Did anyone bother to step in and help her? Sure doesn't sound like it. I don't expect the much from the general public but friends and family, yes i do. Where i come from you don't turn your back on your family even when its hard. You help each other and you don't give up. But then again that is a problem with this world. Everything is disposable, friends family children marriages. Things get messy just walk away.
Ok Im a mother of a 3 half yr old with severe autism as i read the ladies comment i tend to not agree with her as in this situation this lady is the 10 yr olds aunt and what r aunts?? family!!! exactly! what r families suppose to b? support yes… well i wouldnt really call her a supportive person take my daughter out of the equation and lets say i had a nehew with autism i would not leave him out of parties no matter how much he got annoyed i would try to also cater for his needs at the party so he could enjoy himself it would be completely different if this was a strangers place but family really is that necessary to completely not invite him???? As to the breakage and the biting and hitting etc that is the mothers responsibility to ensure her child doesn't do this and if is showing signs of stress to remove the child from the situation until the r calm and i do agree any breakages by any child weather they have autism r not should be replaced… FAMILY SHOULD SUPPORT EACH OTHER NO MATTER WHAT WITH R WITHOUT SPECIAL NEEDS, THE CHILD IS STILL PART OF THE FAMILY XXXXX
Wow well speaking as proudly the only asd person here I see things from both sides I no from what my mom told me that when I was lower funoting that diff for every child mine was social an a weariness an stuff when I was going to a nt child birthday party if she wasn't going to be there she would tell the mom what I might do an stuff as I didn't no Beter then .i feel if I had a child that was severe an was going to a nt kid party I be on my child like fly on poop so that certain things wouldn't happen that might .it is not right for the parent to not desk with the Iusse opr offer to psych if the kid breaks something .i don't think it fair for the other if you except everyone to deal with one child with severe Iusse expsly when it not there special day .that how I feel
I am the mother of a severe non-verbal 14yr old 150 lb aggressive, SIB, OCD, Hoarding autistic son. My family lives in near complete social isolation because we know our son cannot handle foreign environments and he can be a danger to others if he melts or has a triggered incedent. He's not always impossible to handle, but as he has grown bigger and stronger,our isolation has increased exponentially. We have maintained a core group of close friends who've known us since before he was born. All get togethers have always been at our home. Because…….
People who don't live with severe autism simply can not handle it. It IS too much for them. They, through no fault of their own, don't posses the coping skills that we have aquired over years.
It takes a full heart and heaven sent compassion to realize that the mundane issues that seem like mountains to them, are but mere speed bumps on this road of severe autism to me. I am thankful that I can support them though… that I know that pain and struggle is all in perspective.
Families with autism need help though. Especially as the child, and their needs, become harder to handle for any one person or parents to handle.
I feel badly for this family…. for the uneducated (on many levels) sister and the apparent denial and desperation of the mother.
Most of all, I feels sorry for the child. He is headed no where good.
Thank you for your candid humor, dedication, and compassion.
– Brooke Newman-Hawley
Posting here because I can't post on facebook. Why? Family. I know what it is like to have your family not even care to understand topped off by a husband who has no freaking clue that Aspergers is Autism, just a higher functioning level. However, I think this family is not just lacking compassion for the situation, but education. I gave the book "10 things" to my mother and mother-in-law. My MIL read it, my mother did not. So there you go.
As to the xbox, I would replace it if it was broken by my child as I feel that would be my responsibility.
If my kid broke an xbox or anything else I would for sure replace it immediately! Some people have entitlement complexes, and also happen to have kids with special needs…
I am lucky to have a family that accepts my kids with asd. Last summer I was so worried about my seven year old stimming and ruining a wedding ceremony of a family member, but I had family reassuring me it was ok and the most important thing was that we were there. Of course I tried my best to keep him quiet regardless!
I commented on FB and I thought more about what I said that it seems to go all around with the blame. Blame on the Mom for not being white on rice, blame on the family for not supporting them. What I thought more of is that when my little one with Autism was just a few months old my best friend son was already diagnosed with PDD. Before they came to our older daughters party I asked them, "What can I do for you?" While my friend was on the ball and knew that she had to be white on rice and she brought her son's own food etc. it made it easier on everyone.
Do I expect everyone to ask what they can do for us? No, it's nice but not expected. It's just an example of empathy and people who are trying to understand your situation.
I am concerned about a parent who is not getting any support from the school district, doctors and is getting turned away from her family because while many people can lift themselves up and go above the bullshit in life, others just get pushed down and it reflects on all aspects of their life.
I think the mother of the ASD child here is way out of line. The writer's lack of education has nothing to do with her right to defend her own typical child's toys, party, etc. Just because our kids are ASD, doesn't mean they are not teachable. From her description of the parent, I have to question is the child actually severe or is the mom so busy fighting the system that she's failed to take on any responsibility of teaching and supervising her own child. We have always gone out of our way to assure Jon doesn't interfere with another child, be it their birthday party, turn in the inflatable, etc. Jon LOVES inflatables, but as a 200 lb 12 year old, he could accidentally fall on the toddlers and hurt them. So, we will often pay for several tickets and ask the person running the inflatable to allow him a few minutes alone so that he can enjoy the "ride" without hurting another child.
I believe there is a balance to be expected, but we, as ASD parents, bear the ultimate burden. If we want our children to be invited and accepted, then we must go that extra mile to make sure they do not make themselves undesirable. At the end of the day, though, odds are that the ASD child would be much happier at home playing with his toys instead of at a loud party with typical children so in our case, the invite doesn't hurt the child nearly as much as it hurts the parent's feelings.
I read this….and it seems to me that the ASD mom isn't watching her child like she should be. I just told a friend of mine I won't be attending her childs birthday party because my husband has to work. I won't attend any of those things without someone with me (my husband, sister or my mom). Because we watch my child like a hawk. The Monster always has someone with him when we are somewhere that is outside our home. And if I am somewhere I take him to the bathroom with me, I don't eat or I eat walking around. It sucks..but I do it and my husband does it. Here is the other thing…this aunt sorta seems like a bitch. Is that a little harsh? If so…I don't give a shit. If you are this childs aunt then I totally think u should be understanding when it comes to certain things. She said that he has a mind/age of a 2 year old! Okay…my son will be 3 soon, so I get it…she should be a little more understanding. I don't expect strangers or even friends to understand or even be understanding at all about my asd child..but I DO expect imdiate family to understand. My son has 2 wonderful aunts (my sisters) and they are the best ever to him. They love him unconditionally no matter what!! Which is how I feel u should. This aunt needs to be supportive, why doesn't she offer to give the mom of the asd kid a break and watch him? And her saying "I'm not going to change a 10 year olds young mans diaper." I would never expect anyone to change my kids diaper unless it is my husband! But this lady just said that the boy has a mind of a 2 year old…So I'm sorry technically ur not changing a 10 year olds diaper..ur changing a 10 year olds diaper with the mind of a 2 year old. I don't expect everyone to understand, but I didn't ask for a child with autism. And if you are my sister or sister in law or whatever I would at least expect you to be more accepting of things….
I will also say this the XBox thing I would be pissed off too, but I have asked people while at their house with my son if they can put a certain thing up. Like a gaming system or even phone. Why? Because it is temptation for my child, so then it leaves me in a situation where I am having to hold on to him because something is just sitting out for no reason, when it can be put up. When I was a kid and certain people came over my mom would tell me to put my playstation up or whatever, just because things get broken. It happens no matter the age of the child, but it is our home and our property that needs to also be our responsibility. Not saying that the mom of the asd child shouldn't have been more careful with her son, but I also don't go to a house that has shit laying out that my son can get hurt on or break into pieces. Maybe I was a little too honest in this…but I just can't help but think that their needs to be more understanding from BOTH sides here!
Amen! After reading all these comments, I am extremely thankful for the wonderful, caring, kind, compassionate people we call family (and friends). There sure are a lot of dbags out there!
Wow, A.D., kudos for getting past your anger, giving it some thought, and coming up with a compassionate response! I was angry too. I also gave it some thought and came up with another POV: I think the elephant in the room here is that the writer is clearly not an educated person. While this does not negate her feelings, I suspect it means a limited ability to understand autism. Which makes me wonder about the family in general, including the mother of the autistic child. Do any of them really get autism? That behavior is communication and try to understand this communication and teach alternatives? That these kids have sensory needs and aversions that drive their behavior, especially if they can't communicate verbally? That things out of the routine can upset them? Perhaps attending birthday parties are in service of the adults' needs, not the child's. I am all for bringing kids into the neurotypical world, and for the NT world to similarly accomodate people on the spectrum. But, as you know, it takes a lot of hard work, preparation and …education. And the belief that all children can learn.
None of which is to insult the writer, I think everybody reading this does so because we are dealing with people who are differently abled and have an open mind. We see the message, not the poor language. I feel for this woman, and for the mother of the child, because none of them seems to have any support, or the means to buy support, or a good school option which includes support, and respite, which would allow the mother to have a night out! Which, as the ASD population grows, and many of these kids are born into families that have a limited ability to address their needs, will also be a growing problem.
For the record, I am not the parent of a child on the spectrum but work with severely autistic kids and have done so for the past 10 years. I see most of these kids improve, and very few of them are destructive. Most don't have destructive or assaultive behaviors, but those that do generally outgrow them by the time they are teenagers. Those that are destructive or assaultive usually become so when the adults around them cause a situation to escalate, fail to give them ample warning time that an activity will end or be taken away. transition to a new room or activity without preparing them for what is to come, or fail to address sensory overload. Work THAT into an extended family birthday party!
I was defensive when I read her comment as well. I think that families should be more supportive and understanding. My 7 yo is non verbal severly autistic and although he is potty trained to pee, he will not use the toilet to poop. One of the very few times that we asked my in-laws to watch my son, he pooped at the top of their stairs (hard wood floor, one single solid piece). When we got there to pick him up, you would have assumed that he destroyed the house. He has not been let back into their house since. This is ridiculous to me. But it is something that I live with everyday, I simply pick up turds and go on with my day. To them, it was a deal breaker and they refuse to let him come over. So, while I would never allow my son to be out of my sight long enough to do the things the lady in the comment described, I honestly do think that families need to be way more supportive and understanding when it come to dealing with a child with Autism.
That is really crappy (pardon the pun) that your in-laws have allowed such a minor thing to negatively impact their relationship with their grandchild. Anonymous – no one wants to deal with a 7 year old, 2 year old, 89 year old's body waste. No one is jumping up and down saying they want to change the poopy diaper. You seem to think this is something willful on the part of the child. The child is not in control of when, where and how they poop any more than a toddler is. If your 7 year old threw up at their grandparents' house, you would expect them to clean it up, not blame the child and not ban them from the house. This is no different. You should hope that you never become elderly and bedridden and have to rely on someone else to change you.
I feel very lucky indeed for my mother-in-law – when my 3 yo ASD son not only pooped on her hardwood, but smeared it all over himself, her wall and the lamp, we quickly ushered him to the shower to clean up while we cleaned the area – my mother-in-law didn't bat an eye. Her house is immaculate but she has never been anything but gracious about the mess we make every time we visit – which is once a week on average. She just loves him as he is – poop and all. I am lucky as well in that my best friend and sister (both ER nurses – they don't rattle easily) provide safe places for us to visit with no escape routes, no breakables left out and older children who follow our son around and make sure he is safe. It is the only time my husband I both get to socialise (and even eat!) together. I am thankful for these wonderful people every day.
Who do you think want to deal with a 7 year body waste ?
I think there is a little blame to go around in that particular situation. The mom should have been on the kid so that didn't happen or the damage could have been contained to the first incident, but I'm guessing the rest of the family could have been a little more helpful too. Maybe mom needs to better communicate what needs to happen in a meltdown situation so others can help, even if all that help entails is helping her get him to a quiet safe spot. Sometimes someone just being willing to put down their darn drink and open the door is all the help I really need in the moment, but that seems like a huge burden to certain people.
I get caught in a lose-lose situation with most family events. If we decline the invitation we are s*^% for declining but if we come and he breaks something or makes for a less then "picture perfect" event we are s%^& for "letting him ruin" their special moment. So I defer to the first because I would feel responsible to pay for the broken items and that isn't in the budget.
And often times we get the "I'll watch him while you…" but have to decline because last time they "watched" him they watched him from the other room like they would an average 6yr old and for a kid with eloping issues they might as well leave him in the middle of the highway. But they just don't get it, like you said they don't have to live it but a few hours a few times a year so they have no concept of how fast something can happen.
I don't think there is a good answer to "how much should people have to deal with?" You would hope your immediate family would be there for you to lean on and want to be part of the child's life, but as we all know that isn't always the case. And at a certain point others need to come to the realization that this is your life, and if you are all going to be part of each other's life then they will have to be able to deal with your reality at least in tiny tidbits.
From Jrb: Trying to understand anothers' point of view is always a good goal. Tolerance and understanding are things we need to teach our kids through example…but… Protecting your own kids and stopping your child from hurting others is a parent's FIRST priority. My Aspie 7yo is extremely violent. We are ALWAYS within arms reach – even at home so he doesn't hurt his little sister let alone in public. Teachers do the same at school. Yeah, the little so-&-so gets away from us sometimes and things get broken or people get hurt. Accidents happen. But I would NEVER expect a parent of an NT child to just forgive and forget…or even understand. Their job is to protect their child, not make me and my child feel better about this *%!# called Autism that we have to live with.
I think one of the hardest things to deal with is the family branch that is uninformed. It is a choice on their part. We've sent video tapes and books so that they know what to expect. My two kids are both on the spectrum. My daughter passes for normal (12) but my son does not (9). Neither has any sort of filter. We have warned all family members repeatedly that they need to lower their social expectations when we come over or even interact on the phone. The other grandkids are progressing fairly normally, so now the difference is even more stark.
I'll admit I avoid some family gatherings–I'm tired of the judgment and willful ignorance. I'm not asking anyone in the family to learn ABA so they can deal with my kids–but quit PRETENDING we are going to have a Norman Rockwell Christmas. I'll make sure my kids get better at pretending to like you…and I'll make sure they don't break any of your nine million godawful knick knacks. 🙂
i would have to agree with you,we would be on our son as well hes 8 proactively avoiding distruction, harm, meltdown all the way, things do happen and i could understand how someone may feel or hope that at a family get together maybe just maybe i could let my gaurd down a little and people will understand. But sounds like gaurds were way down and it is the parents responsibility to both the people they visit and to the child involved to find a balance in what said child can tolerate, adressing behavoirs, teaching social skills, and being prepared, we would always have a back up in case connor was bored or elevated or seeking just walking down the drive i would be scanning ..yup connor and i could walk down this street or climmb that tree, throw stones in this pond, if he needed a break. bag of tricks at my side always my mind has to keep up and stay infront of his or trouble is eminent yes its my responsibility not so much to others but to him. how much does he realy want to be there like u said the least i can do is make it succesfull for him
I felt the same way at first. I immediately starting getting defensive, (in my own head. lol) But, I too agree that the Mom should have been on her son constantly. She knows what he could possibly do. I understand her probably wanting to just sit with the adults and let her child "play". I know I feel that way a lot. I'm always hyper vigilante about where Jace is and what he is doing. If I am at my parents or sisters house, I am a little more relaxed, because everyone kind of watches out for Jace.
But, if he was capable of doing a lot of destruction, I
wouldn't leave his side. And, unfortunately, even when we think things are going fine, crap happens. My sons stimming consists of smacking a toy off of everything. lol He ended up banging on my sisters brand new refrigerator. Couldn't tell right away, but, there were a lot of scratches left on it. oops.
I also agree with the fact that everyone has their own problems. I am quite sure the people of kids with cancer or severe physical disabilities think that we have it much easier than they do. And, in some respects we definitely do. Compared to them.
So, yes, the Mom should pay for the Xbox and find some help and respite. That way she could go out with her friends and relax. We all need that once in a while. 🙂
We really hate going to other peoples houses because they are not "James proof". Our house can withstand ALL of his emotions. He used to get invited to parties but we tend not to go because we don't want the families to see the "real" James in a very exciting situation. He is 9 and a high functioning ASD kid with combo type ADHD, it is a laugh a minute combo of emotions and explosive behaviors!! We always go, if we go, with an exit plan. We go late and leave early just to make an appearance. Interesting things to think about. ~ Laughter, Could be the Missing Piece Mom
I question if the mother has come to grips with her child's diagnosis? I have a high functioning Autistic child but I only have one friend that "gets it" & accommodates him ( I never asked her too) but my other friends, I see now when my child is at school and I decline birthday invites from anyone except the one who "gets it" (we each have two children all around the same age). Now, in public my child can have a complete melt down and I will try to exit immediately unless I get ugly looks or comments…….then damn it they can leave!!I think the family could be more supportive but I think the mother needs to get a better grip on her child (maybe even ABA or something).
Here's my question. Is it okay for our families to judge us, second guess the diagnosis, never include us or our children in anything, treat us like the dirty little secret? I think that sometimes we expect way too much from our families, yes, but we also take a lot of crap from them too. Sometimes you're an army of one fighting against those who should have been your allies. It sucks. It's great that you have such a great support system, Autism Daddy, but some of us just want our friends or family to call us every couple of weeks and make sure we aren't buried in our own shit. But even that is too much to ask.
Im sorry you are going through this. I wish I could help you. Families are frequently foes, rather than allies. Happens to many of us. My thoughts are with you and your child.
I'm with you Amma…my fam isn't speaking to me…since my sons diagnosis, I have been ignored, blamed for my sons autism, and even had two of my siblings start an all out war with me, telling me that I'm the failure…or worse, trying to start an argument with my child in the room. I have come to the conclusion that there are people even in the family who cannot accept that my son is different and is unique, and will not help with anything related to the care of the child. So I do it, day in and day out, with little to no respite (even though I have the funding for it–I won't get just anyone to babysit my kid)and to date (my son will be 4 this year-) no one in my family would even say" you doing a good job…hang in there"—THAT isn't asking much but it is what it is…right now if my family wants to visit with my kid, they will have to come see us…I made the horrible mistake of taking him to see them almost daily last year, and in the end, was treated like a nobody..and for my son to see people treat his mom this way is completely unacceptable in my book. I don't expect people to be helpful, but am extremely grateful when a stranger says a kind word, or a friend helps me with my kid. So right now my family is ignoring me, and thats fine.–C.B
I agree with you!! My girlfriend has two boys with severe ASD. They are now 18 and 16 yrs of age. She has done her best with no help from the father but her family and friends have been her biggest support system.
Her children has always been invited to all "Sisters" (friends from high school even after 20+ years) parties. Regardless, what happens (meltdowns, stimming) WE as her family and friends learned and took the time to find out what upsets or might cause a meltdown. So for the first several years Holiday parties were always at their house.
I agree family members are expected to understand more. My advice to this person is have some empathy, what if it was your child? What if your child was severely ill or had some other disability? What would you do?
I say this because my 5 yr old son has a dual dx of Down Syndrome and Autism. I have him around his cousins as much as I can. We have sleep-overs and I talk to his cousins to make sure they understand that Everett learns differently than they do and it may take him longer to do all the same things they do. I teach the children to sign so that they can communicate with Everett. Just basic sign, i.e. no, yes, stop, drink, eat, play. I play with the kids to show the kids how to play with Everett and most of the time he is on his Ipad and just watches and then eventually joins in. My family "Sisters" support me with him and take it upon themselves to learn what to do with Everett. I never had to ask, from day one they were there. I guess I am lucky and that my family and friends truly believe in the saying, "It takes a village to raise a child".
I am not knocking "Anonymous", I can see how frustrating it can be. I live it everyday. The only thing that I ask from my family is I have set rules for Everett and ask that they respect and abide what has been set so he can function and perform to the best of his ability.
I do hold my son accountable for his actions, so if he did break something, hit child, bite he is redirected right then and there and I would definitely pay for an expensive toy, video game,etc.
I know I am rambling and I do apologize, but I wish the best for each and every family that lives with a special needs child. It is not an easy task and most parents are doing their upmost to do what's best for their child(ren).
Nichole D. Brown
i am the shoes with my 15 yr old PDD, he was never diagnosed until he was 14. so as for the family we have been kicked out. because of the bad behavior. he did hurt a cousin and he has broken things. i have relplaced the things he broke. i said "sorry" time after time. we dont go to family's houses with him because of the way they treat him. if we are at a family home, we dont stay long. we dont expect them to understand a mild pdd because when i said he had this, they said i lie. they have a sever kid on their side, and if my child is not "normal" or like their child-then im the bad parent. i was told by an aunt to spank him until he grew out of it. i was told he is nothing but a big baby. he had had meltdowns and he weighs over 100lbs. i was told he is nothing but a "curse" so i take my blessing and I make sure that he has peope that love him for him. I make sure the younger siblings (he has) include him. now my pdd son is being invited more to bd parties, camping trips, church functions, and more. he is welcomed by a small group of "normal" kids. he has even had a girlfriend. he broke up because she talks to much. like i said my son is very mild. family doesnt understand our lives and God gave us these kids because He knew we can handle it more then any one else can. thats just the way i think
I have grappled with this question as well. We went on vacation last summer, and several people at our hotel called the front desk and complained about the noise of our son's stimming. At first, I was angry, but then I thought, do we have a right to ruin someone else's quiet vacation? I think this woman should definitely replace the XBox, and I agree with the comment above me that the mom should be working to correct some of these behaviors. A teacher once told me at an IEP meeting, "Don't let the autism/disability hide what he CAN do." And I believe that's true.
Lucy, you are awesome. I just found your post, but it is always better late than never. What I wouldn't give to have the compassion, wisdom, and sheer grace that you have somewhere in my dysfunctional family. I am just glad to know that people with your spirit exist. Thank you from a mom with two boys on the spectrum.
Lucy, I hope my son has a friend like your daughter (with a pretty amazing mom) one day!
Lucy, u are awesome! If only there were more people in the world like u and your children!
and my name is Lucy : ) – forgot to include that ^^
I have 3 typical children. I follow this because I work in an autism room with non verbal kids ( only a part time aide – nothing heroic, but I love it) . Anyway – my daughter is 12 and for the last 7 years has been placed with her friend in school who has a severe TBI – while not autism, she sounds like the KING – she is verbal, but not really, if that makes sense. Yes, she has had a TOUGH time. When they were in Kindergarten together, at 6 years old – this girl, " meg" drew on my daughters dress, cut her hair once, spit on her, and countless other things. to make a very long story short – my child, " emma" has been placed with Meg every year since. My emma does therapy with Meg, social classes after school one day a week, and a few other things. When Meg comes over – she has wrecked thngs – a lot. We learned her triggers and put those things away before she comes, and my 12 year old gets out the play dough and shoe lace books – – because meg likes them and they keep her calm. My child has been taught compassion from a young age. We love this family and no, she doesn't come to parties anymore much ( always invited) and she may skip playdates where the kids are going to a loud movie, or something physical ( no use of her left leg) – but I want her to ALWAYS feel included, I want her to know we love her and am happy to make accommadtions for her.
so, I obviously think the above post just sucks, and someone should have taught her compassion when she was 6. This could happen to any of us at any moment.
Sorry. That's just how I feel. I'm typing from cell so sorry about typos
I had to reply to a random post here – couldn't reply to original post by AD for some reason.
Honestly I didn't even finish reading that. That situation is BOTH of their faults. The mother is being irresponsible with her ASD child by not trying to correct some of those behaviors! She should replace that xbox in my opinion. I work with ASD kids at a school/residential facility here in WI that works with ASD kids and we correct that behavior.
~Tiffany, Big Stinky Dog Blog
I expect more from said child's parents. WTH are you putting your child in situations where he is likely overwhelmed with sensory issues? I've taught kids on the spectrum for over 10 years. This makes no sense to me. Has this child's parents prepared him for what to expect at a party? For the noise? Smells? Etc. He sounds overwhelmed. I don't fault the child. I fault the parents. I would have been really upset if this was my child's party and it was completely ruined. I am not faulting the child. I am faulting the parents..100%. You don't get a pass to let your child destroy things because you haven't taken the time to work with them on being in social situations. It's not about being a bigger person. It's about having respect for your family as well.
I can not reply on my own phone for some reason so I am piggy back this one. I do not agree with this family member, at all. In fact, I would love to chat with her and let her see what it is like on a daily basis. Fuck it. I do feel that parent could have paid for the X box. …maybe she couldn't afford it. Idk. I know I spend out of pocket alot of money on therapies. I guess I just expect more from a family member. I have handed my family their ass a couple of times. The child is autistic and is mentally 2 yo….i expect her to be the bigger person . Karma is a bitch. I have no respect for her. Just Make No Apologies.