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” :-).