(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???
THE END….
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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 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.
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 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.
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.
and my name is Lucy : ) - forgot to include that ^^
Lucy, u are awesome! If only there were more people in the world like u and your children!
Lucy, I hope my son has a friend like your daughter (with a pretty amazing mom) one day!
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.
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 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
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.
-Amma
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
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 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).
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 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. :)
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 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. :)