Category: The reality of autism

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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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Sharing the Autism Spotlight

I have a few favorite bloggers, as I am sure you do as well.

Things have been very hectic in my house lately, so I thought I would share one of the posts that I related to recently.  It is by Bacon and Juiceboxes: Our Life With Autism.

“G.I. Joe’s”

“They’re not as sweet as an old family heirloom. They aren’t as romantic as Daddy’s first BB gun, or Little League baseball glove. But for me, they are nostalgic. They bring me back to a simpler time in my life. I spent countless hours playing with them in my bedroom, in our basement, in the patch of woods behind our house that, to me, was as expansive as the universe itself. They dominated every Christmas, birthday, and the occasional good-report-card day of my childhood.

When I turned fourteen and discovered those mythical creatures called “girls”, I packed them with more love and care than I would ever admit to those scary, pretty creatures and stored them away in our attic.

Even back then, I had a silly fantasy of carefully wrapping them all and giving my future son one magical Christmas morning. I figured his ninth, maybe tenth. We would unwrap them together and set them up in a magical epic battle scene of good vs. evil. Until then, they would remain in their protective boxes, stored away in the secret corner of the attic. I had such grand and silly plans.

First, I met my beautiful wife. Still, they sat unopened. (Well, I may have opened them once and may or may not have whispered a “pew, pew” or two)

Then, our first child. Her name was Anna. She wouldn’t be interested. They remained unopened.

Then, our son. My plan was unfolding perfectly.

My parents sold my childhood home and the boxes were moved into their new basement. God slowly revealed His own plan to me. It was different than mine, of course, and as I have learned, it’s the only plan that really counts. My son is turning fourteen himself this year. Those boxes are still sitting in my parents’ basement. That makes me a little sad (a lot sad sometimes) and that’s O.K. It was a silly fantasy that was never promised. I’ll trust God’s plan and focus on the wonder that is our life. And, I’ll forgive myself and allow a minute or two of self-pity when I feel like a good epic battle of good vs. evil that has never interested my beautiful son. Then, I’ll get back to it… back to what makes him happy… back to God’s plan… back to what really matters.”

This touched me as Buddy recently had a birthday… this year was harder for me than most.  I actually had a week or two where I was honestly depressed. I think, because this birthday would have been one where I had imagined him on his own, married and starting his family of 2 children (a boy and girl). He would have been working at his dream job, and asking advice on buying his first home.  I would have been helping his sweet wife pick out curtains and baby clothes.   But instead, I bought him a new Tonka truck, and a bunch of airplanes.  And I also did something that was very hard …I went up into the attic and got down his highchair (that I was saving for his children) and I gave it away.

That was last month,  things are back to normal now…Buddy loves his Tonka and planes (he sleeps with them all) and we are also back to God’s plan, and yes, it is what really matters.

Please take a minute and go to Mr. Bacon’s Facebook page and enjoy some of his wonderful posts.

~ASM

 

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ISO A New Best Friend

ISO  Best friend, must have a great sense of humor, compassion, be intuitive and know how to “take it to the grave”.  Preferably a woman, with at least one child, bonus if the child has special needs, such as autism, extra bonus if said child is a young adult.

She must be able to differentiate between venting and literal meaning in regards to husband ranting.  If I say “I want to kill my husband” she needs to know weather to hand me bowl of ice cream, or to start Googling “How to get blood  out of the carpet without fading the color.”

She needs to be able cheer with me when my autistic child reaches a long overdo milestone, and not get grossed out when I talk about some of the not so pleasantries that come with being an autism mom.

She needs to be able to look at me and know that I NEED to get out of the house and have a girls day, because the overwhelming black cloud that follows me around, is getting so close that it’s starting to block out the sun. Or that I need  her to just bring her hubby and kids over with a board game and snacks for a communal gathering.

She cannot be judgmental, especially about the condition of my house if she drops in unexpectedly, or about my weight.  However, she needs to motivate me by saying  things such as “Your house smells great,  I think it’s the smell of the fabric softener lofting through the air, from the heaping pile of laundry on the couch, waiting to be folded.” and “Come on, get your sneakers on, I feel like a 2 mile walk n talk.”

She needs to be able to read between the lines, when I say things like “Mary’s daughter just had a baby,  Mary is now a Grandma!”  and know that what I am really saying is “How lucky Mary is, I envy her, I will never be a grandmother.”

She needs to be able to blurt out the lines to a movie or sing a bit of a song that pops into her head as it relates to our conversation.  Bonus if she can join in as I do it.

She needs to be able to get along with my family, and mix well with the white collars, blue collars and rednecks.

Above all, she needs to know that most of this information that I share with her, has to stay hidden in the room that I have created, because no one on the “outside” can ever know… they just wouldn’t understand.

This position is open until filled,  compensation will be matched accordingly.  Serious Inquiries only.

~ASM