Autism is my daily routine

Hi all,

I am posting today because I have been reading a lot of articles about other families who are also dealing with the everyday norms of autism.  In reality there is nothing normal about it.  For example, some kids have had the experience where they bite an apple and out pops a tooth.  Not mine, oh no!  Instead, my kid bites his teacher's leg....out pops a tooth!  To which his behavior changed from that of anger to one of extreme excitement...We have been waiting for that tooth to fall out forever.  So I should be thrilled as this IS supposed to be exciting and yet, it's a drop my head moment.

You see, Autism is daunting.  Your heart breaks...and it rejoices.   A lot of that has to do with how you see the future because with Autism you HAVE to live in the now.  But living in the now makes you think of the future.  And sometimes that is very hard.  The parent of an Autistic child wonders....will he make it to mainstream, will she be picked on for the way she behaves, will he ever go to high school, will she ever have friends that see beyond the difficulties?  I mean, I really could go on and on....

So I thought I would share this list....a list of things that have become my daily routine.  Just life in general for me...maybe it will let you see into my world, maybe it will help you see that you aren't alone.

1) Sleeping
Sleeping is different.  We go through spurts where we sleep through the night, then we have spurts where we just don't.  For instance, in the last 4 days JB has gotten up 4 times a night.  Last night was the worst....every hour on the dot.  In came my boy who wants to sleep in mama's bed.  Instead I walked him back to his room knowing that if I let him sleep in my room, it will become "a thing".

2) Food/Eating
So JB only likes food that is red or orange.  Makes it difficult to keep him on a nutritional plan.  He eats Doritos, strawberry poptarts, spaghetti-o's, and most Campbells soups because they are soft which means I am always making a separate meal for him.  He does not feed himself unless it is finger foods.  But we are working on this.  He needs lots of prompts and we negotiate....for example, if you do this, then I will that....For some reason he just won't touch silverware.  It's a thing.

3) Dressing
I will say that JB has come a very long way here.  He now looks for the tags and knows that tags go in the back.  But dressing takes 30 minutes and in the rush of the morning, who has time for that?

4) Bathroom
So...JB just started washing his upper body on his own.  To get him to do this I drew X's on his arms and belly.  His job was to scrub them off and ta-da...JB now washes his upper body alone but he has balancing issues so I scrub his legs to help.  Brushing teeth is my job and so is potty.  JB can potty by himself but he cannot wipe---if ya catch my drift!  Yuck but true!

5)  What does it mean to be alone?
JB loves to be around me.  I love that...it's special.  But when I say, he loves to be around me, I mean that he is always touching me.  He follows me all over...if I am in the shower, he is laying on my bed waiting for me.  I am rarely alone.  Number 5 is a double-edged sword really.  I never thought JB would be a touchy-feely kinda kid.  So, I am thrilled that he loves being around me but sometimes, well sometimes, I just want to go to the bathroom without company.  I would like to eat dinner without feet in my lap.

6) Potty Mouth
JB has an incredible potty mouth.  It comes and goes but today, he said the "F" word at least 20 times in five minutes.  Like it was nothing.  And just completely in context of conversation.  The best is when grandma and grandpa are here or when we are out in public.  All I can do is smile and shrug my shoulders because, really, what are ya gonna do?

You know, this list really could go on forever.  It could.  I chose these 6 things because they are huge issues for us right now but with Autism there is always something...always.  Autism does not stop.  I work all day then come home to more work.  It's different work but still work.  And it is hard...I am often left with the feeling that no one understands me.

Today at the grocery store, a woman I don't even know, started talking to me.  It was just small talk but Autism came up because she was curious about all the packages of Yoo-hoo's (strawberry milk in the form of juice boxes) I was buying.  When I told her about JB, she literally hugged me.  "You need this, mama," she said. 

Guess what?  She is right.  Sometimes, I just need a hug.  Someone to notice me.  Because the girl who seems fine is not always fine.  Sometimes it's an act that I go through.  Autism does not stop.  It does not just go away....everyday is a new adventure.  Sometimes that adventure is good and sometimes, well, sometimes it is VERY hard.  But in the grand scheme of things, it comes down to this.....love.  I would not have my life any other way and that, my friends, is the truth!

TTFN,
Martha