Autism Parenting can present a family with unique challenges, that exist nowhere else in life. Some of these challenges are more challenging than others and some are really more solutionless than challenging in the first place.
Having 3 kids on the Autism Spectrum under my care, I can say that I have found many things frustrating but there are some things that truly cause me to pause and say to myself, WTF am I supposed to do with that?
As I’m sitting here trying to put words to my experiences, I’m chuckling a bit because I can. I can assure that the chuckling only takes place after the fact because in the moment, it’s actually pretty fricking frustrating.
My kids have this thing where everything has to match. It’s a common trait for those on the Autism Spectrum and I believe (correct me if I’m wrong) it’s sensory related. Let me give you an example.
When the boys come home from school and go about choosing their respective snacks, Elliott will be upset if he has a fewer number of snacks than Emmett does. This of course goes both ways with Emmett having the most profound difficulties with this.
For whatever reason, they don’t have to have the same snack itself but they still have to somehow equal each other.
Emmett might have fruit snacks and Elliott might have crackers. Maybe you get five fruit snacks in a package and in Emmett’s world, that means that Elliott can’t have more than 5 crackers or else the numbers would be uneven.
Emmett doesn’t take things into account like Elliott’s older and therefore will generally need to eat more or that he wouldn’t even eat it if I did give it to him.
Elliott doesn’t recognize that I truly struggle getting Emmett to eat anything and so if Emmett actually asks for something to eat, I’ll offer him as much as he wants because otherwise, he loses weight.
There is no rationale I can provide them with to aide in their ability to overlook the things that don’t match.
It’s not even consistent either.
This only really impacts certain things in their life but it could involve anything at any give time. Does that make sense? It’s not just food or toys or presents. It could be that the picture on the right glove is slightly different than the picture on the left glove.
I will admit to threatening Santa Clause and the Easter Bunny at times, especially the Easter Bunny because if the candy isn’t the exact same in both of their baskets, all Hell will break loose. This year, the Easter Bunny took great care to make sure everything was exactly the same. lol
Anyway, it really is frustrating because the times that I plan ahead and make sure everything matches, the boys don’t seem to care one way or the other but when I don’t think they’ll care one way or the other, it’s a complete disaster.
Let me head off a few questions before they even get asked..
No.. The boys aren’t spoiled and this isn’t something they have control over.
Yes.. This really is a sensory related issue and not a discipline problem.
Yes.. I’m far from the only Autism Parent dealing with things like this.
I think this is along the same lines and no longer eating a favorite food because the packaging it came in has changed. To those of us not impacted by these sensory issues, we don’t understand the correlation between the color of the package and how the food inside it tastes.
That being said, it’s important to remember that just because we don’t process things this way, doesn’t mean that this isn’t real and even painful for those who do.
I TOTALLY UNDERSTAND where you are coming from on the whole “if the package changed, then the food changed” thing…my daughter freaked when the box on Kraft “blue box” mac and cheese changed
That’s such a frustrating thing for everyone. My kids can taste the difference between batches of food. For example, if they change the ingredients my kids will know.
Sadly, you (and other parents) are suffering the worst of the worst. Nobody in a right mind can expect a family, must less a single parent to have to cope with all this at the same time, but NOBODY in their right mind should accept that this makes any sense. As I’ve written about, when very good, academic researchers in the 80’s could not find a family with 2 Kanner Autistics in one family . . . how is this now possible today. It isn’t. Hope you and so many (and your children) get the focus and help they deserve much sooner, than later.
Dr. Goldberg, I’m a bit confused by your comment.. Are you saying that it’s not possible to have more that one child with Autism in a single family unit? Are you saying there’s likely a misdiagnosis? All three of my kids were diagnosed by Akron Children’s Hospital. My oldest was confirmed by the Cleveland Clinic. My youngest was confirmed by Case Western University. All three of my kids have also been confirmed by Dr. Lee Reynolds as well.
The process was exhaustive and many other things were ruled out before they received their diagnosis. There was genetic testing and in some cases rather extensive genetic testing.
After 10 years of ruling every other possible thing out, my oldest was diagnosed with childhood disintegrative disorder. Extremely rare, I know but so are the rest of his health issues.
Could you clarify where you’re coming from be a use if there’s something that’s been missed that could improve their lives, I’m open to exploring it.
To me, his response was not doubting your situation, rather a comment on how much more prevalent autism has become. Personally, I know 3 families with 2 children on the spectrum, and I know of at least one family in our area that has 3 children on the spectrum. I didn’t even know what autism was until I was in university, now, I know it all too well. You do a great job with your blog 🙂
Thanks. I wasn’t sure what he meant. I was hoping for clarification
I TOTALLY UNDERSTAND where you are coming from on the whole “if the package changed, then the food changed” thing…my daughter freaked when the box on Kraft “blue box” mac and cheese changed
That’s such a frustrating thing for everyone. My kids can taste the difference between batches of food. For example, if they change the ingredients my kids will know.
Sadly, you (and other parents) are suffering the worst of the worst. Nobody in a right mind can expect a family, must less a single parent to have to cope with all this at the same time, but NOBODY in their right mind should accept that this makes any sense. As I’ve written about, when very good, academic researchers in the 80’s could not find a family with 2 Kanner Autistics in one family . . . how is this now possible today. It isn’t. Hope you and so many (and your children) get the focus and help they deserve much sooner, than later.
Dr. Goldberg, I’m a bit confused by your comment.. Are you saying that it’s not possible to have more that one child with Autism in a single family unit? Are you saying there’s likely a misdiagnosis? All three of my kids were diagnosed by Akron Children’s Hospital. My oldest was confirmed by the Cleveland Clinic. My youngest was confirmed by Case Western University. All three of my kids have also been confirmed by Dr. Lee Reynolds as well.
The process was exhaustive and many other things were ruled out before they received their diagnosis. There was genetic testing and in some cases rather extensive genetic testing.
After 10 years of ruling every other possible thing out, my oldest was diagnosed with childhood disintegrative disorder. Extremely rare, I know but so are the rest of his health issues.
Could you clarify where you’re coming from be a use if there’s something that’s been missed that could improve their lives, I’m open to exploring it.
To me, his response was not doubting your situation, rather a comment on how much more prevalent autism has become. Personally, I know 3 families with 2 children on the spectrum, and I know of at least one family in our area that has 3 children on the spectrum. I didn’t even know what autism was until I was in university, now, I know it all too well. You do a great job with your blog 🙂
Thanks. I wasn’t sure what he meant. I was hoping for clarification