Category: Autism Mom

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Autism Mama Bear

I am a mom to a wonderful 4 year old little boy with autism.
We began our autism journey at the age of 2 (Although I knew before they told me). I think I kind of always knew, something inside me, told me.
When I heard the diagnosis for the first time, it was like a ton of bricks being lifted off my chest. Now FINALLY an answer to why my son is “different”.
Nearly a year later he was diagnosed with 16p13.11 Microduplication Syndrome.  For those that don’t know. It is a genetic disorder, the way your DNA is built, my son has extra DNA pieces, so to speak.
I felt relieved and sadness at the same time. I think inside myself, I was hoping the autism diagnosis was wrong, and he would outgrow it like everyone was telling me. But when I faced this diagnosis, this told me it was not going away.
Since then I do everything I can to educate and advocate for him. There are times I have to step away, because it gets to be too much for me to handle.
I think its important for us autism moms to all do this. Take a break from autism.
We are mothers first. But we have to remember to take care of ourselves too.
~ AMB
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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

 

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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