Tag: Autism…it could be worse

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A Nightmare Come True aka Autism and Hurricane Florence

If you are a special needs parent, then one of your biggest fears is chaos, I’m not talking about your child’s favorite cup being in the dishwasher, or his favorite episode of Friends being accidentally erased from the DVR.  I am talking about, not being able to plan a vacation  for fear that it will be ruined because your child may get over stimulated or have the meltdown of all meltdowns.

We this wasn’t a vacation….this was a hurricane!

Thankfully we had a few days to prepare before we were evacuated.  I stuffed huge plastic bags with blankets, sheets, stuffed animals and as many clothes as I could find.

Why would I pack everything in my linen closet and in my son’s drawers?  Because on top of being scared that we wouldn’t have a house to come back to, or that the house we were staying at may get hit harder and we may get injured. I was TERRIFIED that my incontinent  adult son, would wet through his Depends and urinate on our host’s furniture, and carpets.   Not only ruining someone else’s belongings, but running out of changes of clothes and linens that we would be unable to wash.  As well as the fear of him getting set off and being inconsolable.

So our Thursday started out with us loading our vehicles with pets and plastic bags.  I gave Buddy a bath, so that his routine wouldn’t be “off” as well as knowing it may be his last bath for a few days.

We stayed with family, so Buddy is comfortable at their home and they are familiar with him.  I brought some plastic mats that I made (Old flannel backed tablecloth cut in half and folded) and placed them (doubled up) with a throw blanket on top for extra absorption, on the couch where Buddy would sit for the next few days.

We brought air mattresses, and we took big trash bags and duct taped them to the mattress that Buddy would sleep on.  Then put a sheet over that.

I made sure he had several of his favorite belongings…pillows, toys and most important… his MP3 player,  my laptop and the Friend’s DVD collection.

Thankfully, there were no incidents or meltdowns.  We spent 6 days there and Buddy was near perfect.   I think he even tried not to pee.  There was one day that he didn’t urinate at all, which started to concern me, but he has since made up for it.  lol

I do have to say that for those 5 days,  we cuddled, held hands, rubbed heads and had some wonderful mother/son moments.

So,  90% of my anxiety was worrying about Buddy and how this experience was going to effect him.  When in fact, he was the easiest part of it all!

Safe, sound and home, in our own beds.

~ASM

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The Private Parts

When I was growing up we didn’t say certain words.   Those words were nonexistent in our home.  Private parts were not talked about.  I vividly remember riding my brother’s bike…remember banana seats?  Remember how you would slide off of it, like butter in a cast iron pan? Well, I slid off the seat…on a boy’s bike.   The memory I have, isn’t  the actual slip-up (or down as the case may be) but of telling my mother that “it hurts where I pee from”.
I made a promise to myself that my children would never feel embarrassment from having to discuss any body part.  Now, mind you, I didn’t want them yelling out as if in a Kindergarten Cop movie.  But I certainly, didn’t want them to not be able to talk to me openly.   So I decided to compromise (because, as you can see, I am still not very comfortable saying those “dirty” words).
What I came up with was “pee-er”   Boy and girls can have pee-ers.  (and yes, as they got older, I planned on using the correct terminology). And there’s a fly on my wall that gets quite a belly laugh out of me yelling at my 25 year old son to “PUT YOUR PEE-ER AWAY…Nobody wants to see that!!!”
So fast forward to Buddy at about 5 years old.  We were in the process of attempting potty training (which failed).  We were also in the process of training a new service provider. (which I hate to this day)
So here we are Buddy, the main provider and the new back up provider all in the bathroom.  I had told her that we call his boy part, a pee-er.
As I stood in the kitchen nearby, I heard the new provider say something, and I listened.   She said it again.   When they came out, I asked her what she had called it…she said “Pierre” …I started laughing as it all clicked in my head.    Pee-er sounded like Pierre which is French for “Peter”.  … “yes, yes” in French is  “oui, oui” (pronounced “wee wee”).  Even now, nearly 20 years later, I still get a little giggle out of it, and wonder… if I could find a little beret, would Buddy keep his Pierre covered?
~ASM
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Putting Autism in Perspective.

Yesterday, I attended the funeral for a young man Buddy’s age. I didn’t know the boy, but I know his mom.  As I sat there, pictures of his life scrolled on a screen.  I saw him go from an infant to a grown man in 10 minutes time.

As I watched this vibrant boy grow into a man, full of life and smiles, people were sharing about his love of surfing, fishing and hunting, as well as his joyful, loving demeanor.

At first I was thinking about this young man being my son’s age and having such a full, active life.  As I realized that I was feeling sorry for myself, I switched gears, and focused on this boys mother.  What a horrible feeling it must be to be saying a final goodbye to your child.

After the funeral, I was very sad for the rest of the day, trying not to think about how I would feel in this other mother’s situation.  And then it occurred to me,  Buddy will never surf, fish or hunt…but he will also never suffer from depression, suffer addictions, or commit suicide.  I am the lucky one here…my son just has autism.

~ASM