I wrote this post a few months back but due to the string of crabby posts I had published around that same time, I decided to sit on it for awhile…..
Just a few days ago I was involved in a couple of discussions that were not about this topic exactly, but sort of around the same areas of frustration, I remembered this post and have updated it to include the other topics of discussion….
I am also realizing that this is what is becoming my annual, before the holidays crabby post.
I do want to be very clear that I am in no way complaining about my child. I love him more than life itself and there is nothing I would not do for him. This has little or nothing to do with him directly, just the people around us (all of us).
(updated portions are in italic)
I was reading a face book status recently written by the mother of an autistic adult son. The post was about a certain event that her son was planning for. He was planning out everything everyone was going to do for him and give him, while never giving a thought about doing one thing for his mother (the poster).
She was venting…. just venting.
Now… parents of Neurotypical children seem to be allowed to, and quite often do vent, and I have read much worse from some of those parents. For some reason, we are not.
When we do, one or more of these things happens:
1. we get a truckload of advice
2. we are made to feel as if we should somehow be above complaining
3. we have people feeling the need to explain autism to us.
The comments she was receiving came mostly from group number 3 and I really started to feel bad for her.
“You know he has autism”
“That’s what autism is like”
“Being self-centered can be a trait in (SOME) autistics”
News flash….. we know this. Just because we know this does not mean we do not still have our feelings hurt from time to time. We are still human.
DC is a pretty lovable guy and I do know that he loves me. Not being from a very affectionate family, except when we were forced to hug and kiss every single person who came to visit or we went to visit (children should never be forced to hug and/or kiss ANYONE if they are not comfortable doing so – my opinion only), I am sure I over-compensated for that with DC and some of his “cuddliness” is learned behavior – not all, but some. I also know that in his mind, everything is about him. I am not complaining at all, I know this. This does not mean that I don’t get my feelings hurt when his Dad shows up and it’s like the heavens have opened. Or when I know he is only excited about my birthday (that comes right before his) because HE is going to get to go out to dinner.
Sure, there are times when he goes out of his way to do something nice for me out of the blue, like bringing me coffee (sometimes out of the sink, but he tries) but the reality is that yes, he knows he is doing something nice, but he also knows he is going to be praised for it. He does it for the praise and I am his biggest enabler in that area (She says after buying and just finishing wrapping a gift to myself from DC, so he can be excited and praised for giving me a gift on Christmas. Do not worry, he is a man and practiced at the art of taking credit for anything given or sent with his name attached, whether he knows about it or not.). Being raised in negativity, I do tend to go out of my way to praise him for every little thing and I do love to see him happy. I am thankful that he does want to do nice things for me and others, no matter the motivation behind it. After all of this time and understanding everything I have learned and understand about him over these past 26 years, I still can have my feelings hurt. I know it is not his fault and I am sure that the face book status poster knows that as well, but sometimes we just need to vent – just like everyone else…
Sometimes we get our feelings hurt too – just like everyone else and there should be no shame or guilt in that…
I was recently involved in an “All kids do that” discussion. “All kids do that” is a pet peeve of many parents of autistic children and adults. It tells us that you believe we are exaggerating their behaviors or difficulties or worse….. feeding into them or creating them.
My reply: (edited because many of my comments written on my phone are strewn with typos and could be said a bit better if in front of a computer with time to think)
I think that much of the problem comes from it being very difficult to explain our children to people (especially when they are not listening due to their own preconceived notions). Saying that he can’t stay alone or he is impulsive does not give the full/true picture. Because we cannot stand there and give 1000 examples to make them understand – they just will not get it. This is a big reason why I continued to blog. Lots of Stories to give a snapshot of how his mind works. Unfortunately the people who might benefit from understanding how his mind works probably do not read Autism blogs. Believe it or not, I get the same response “all kids do that” and I have to remind them that he is 26 and all kids or adults do not do that.
(Please listen to Val’s video that came out of the same conversation: THE BLAME GAME – WHY WE BLAME OURSELVES BUT YOU SHOULDN’T (VIDEO) )
Coming in on the heels of “All kids do that” for me is “All parents have to do that”
I have been doing this parenting thing a long time now and I have come to realize that some events and gatherings are just not worth it. Most times, DC really could not care less if we go or not. There are a few exceptions to this and we do always attend those gatherings.
When I try to explain that these events are not enjoyable for me (and as I said, he does not care if we go or not) because I have to watch him every minute – not because he will do something horrible but because he is not always aware of his surroundings and I have to make sure he does not bulldoze over a smaller person or child. He gets excited and wants to hug everyone. He does know to ask permission first, but there are times when he just gets too excited to remember to ask. Some people do not like to be hugged. He is a big guy and a bear hug from him can make you feel as if you are being crushed. I have to watch that he does not stick his hands in the food and a hundred other things.
“All parents have to do that”
Do all parents get relegated to the basement when it is announced that all of the children have to go downstairs? The other children’s parents could let their children play in the basement without them, but I could not do that. I still could not do that today.
After 2 1/2 hours (I know this due to the number of times we watched the Winnie the Pooh video) in the basement while all of the adults were either upstairs or outside playing football – I had to wonder why we felt we had to attend. I could have been watching Winnie the Pooh in the comfort of my own home. How was this enjoyable?
Do all parents have to make sure their 26 year old child is in their line of sight at all times?
Do all parents have to bring extra gifts for their child to open so while everyone else is opening “just what I wanted” gifts, he does not end up with just an Autism Awareness Bag (just a bag – a shopping bag) or a mini-sharpie on a key chain or one of those little lunch boxes that he knows come filled with candy, without the candy?
Your child tries numerous times to say hello to a child on the other side of the room. She just stares at him as if she is terrified, and her father, instead of asking her to answer him, puts his arm around her as if he was protecting her from this horribly scary person who is saying hello from across the room. Do all parents have to lie to their child by telling him she answered but he just did not hear her, so he won’t have his feeling hurt?
Don’t get me wrong; DC is not sheltered. He does many things and goes many places, but I have learned over the years that these types of gatherings are just not fun for anyone.
While we are on the subject:
If your child is an adult…..
Do you have to look for a babysitter if or when you want to actually go out without your child? I do.
Can you just run to the store whenever you need to? I can’t. (I could be there and back by the time I round him up and get him out of the house)
Can you just relax at the pool like everyone else while your adult child swims? I can’t.
Do you have to watch your child while he eats so he does not choke? I do.
Do you have to stand outside the rest room while your child is using it because 1. you don’t know who else might be in there and 2. in case he has a seizure? I do.
Again, I am in no way complaining about my child or our life, but hearing “all parents have to do that” just sends me over the edge. All parents do have to do that…. for a time, not forever. I do not have a problem doing this forever, I just do not want to have to explain myself to anyone anymore.
So, yes by all means invite us. If we can make it, we certainly will. If we do attend, please refrain from the advice, the guilt or the lectures about everything we are doing wrong and how you can do it better.
If we decline; “all kids do that” or “all parents have to do that” is not the road to take to try to change our mind.
Wishing you all a Happy and Anxiety Free Holiday.