Sharing a Favorite Blogger – Bacon and Juiceboxes

I follow several autism bloggers and I certainly have a few favorites.

Last week I was reading a blog  from Bacon and Juiceboxes and it really hit home.  Sometimes, we feel so isolated as special needs parents, and it is comforting when we find out that our thoughts really are not ours alone…most of us think and feel very similar.

Today I am sharing that blog with you.

“I cried when you were diagnosed
I cried because I thought I did something to cause it
I cried because I wondered if I would ever hear your voice
I cried because I wanted you to live the childhood I imagined for you
I cried because I wanted you to have a typical relationship with your sibling
I cried because I worried that you wouldn’t have the capacity to learn
I cried because I worried that you wouldn’t have the capacity to love or be loved
I cried because you never asked for anything
I cried because I didn’t want people to treat you differently
I cried because you never seemed to notice or care when I wasn’t home
I cried because I worry that other kids will be mean to you
I cried because I was mourning the life I envisioned for our family
I cried every time I said the word autism because I feared the unknown
I cried because I worried about the future and what it holds for you

I cried when we found a doctor that “got it” and helped us to help you.
I cried when our early intervention speech therapist said you “would be a talker”
I cried the first time you pointed and said “Look!” when you saw fireworks
I cried the first time you showed compassion and empathy to your sister
I cried the first time you started yelling “mommy!!” or “daddy!!!”
I cried when I saw through your school work how you were learning all along
I cried when I realized you knew so much more than I ever imagined
I cried when you started to put words together and make basic sentences
I cried the first time you asked for a toy while out shopping

I cried sooooo many nights when your body would not let you sleep
I cried when you couldn’t tell me what hurt you
I cried when you didn’t have words to explain why you had a meltdown on the bus
I cried when I let the “comparison” monster get the best of me
I cried when I felt sad that you may not go to prom or college or get married
I cried when we had to leave the aquarium when you had a screaming meltdown
I cried when you left a bite mark on my arm that took two months to heal

I cried when I saw how much your teachers care and work to see you succeed
I cried the first time you did a chore around the house
I cried when I felt the kindness others have shown to you and our family
I cried when I realized what a special community we are a part of
I cried each time I realize how you have brought purpose into our lives
I cried when I see how independent you are becoming with self-care
I cried when I realized you are gonna be taller than me next year
I cried each time I get a glimpse of your sneaky side and catch you grinning

I cried a lot because I worry when I’m no longer around to care for you
I cried a lot thinking of your sister and wondering what your relationship will be like later on
I cried so much because of the love I have for you and your sister

I have cried a lot over the years… the journey isn’t always easy… some days it’s sad tears, and some days it’s happy tears. It’s important to let yourself go through all of those emotions. It’s important to do what’s right for YOU and your family. People will have all sorts of advice for you. But only YOU will know in your heart what to do. So, sometimes it’s a sad cry, and sometimes it’s an amazingly-ugly-sobbing-happy-cry!

In the end, all these up’s and down’s have really given me perspective about what truly matters.

—mrs b

#SomeDaysAreJustHard
#Autism
#IWishYouCouldTellMe”

This blog post, made me cry, yet made me feel less alone. Thank you Mrs. B.

Remember,  it’s okay to cry.  It’s okay to hope and it’s okay…it’s going to be okay.

~ASM

 

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

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