Tag Archives: pdd-nos

Autism Is…

 

Autism Is…

a 47-pound, almost-5-year-old in diapers who thinks the toilet is a playground.

wild nights with no means to quiet, calm or comfort your child. 

locks on everything – everywhere – praying that your child isn’t the next one to disappear in the middle of the night, never to be seen again.

not knowing what your child thinks or feels.

not knowing when or where your child is in pain. 

saying, “I love you, Baby” a thousand times and never hearing it back.

feeling desperate for a hug from your child, knowing that they will push you away every time.

expensive.

isolating – few people understand what this life is like, even fewer stick around to try.

lines of Pixar Cars in front of the cable box – again – in the exact same order – blocking the remote signal and reminding me – again – that autism sucks.

repetitive – it is the same song, the same movie, the same word OVER AND OVER AND OVER AGAIN.

a never-ending fight to get the education your child deserves.

24/7 fight or flight exhaustion – there is always something else waiting to attack – diet, sickness, behavior, education, social anxiety, sensory overload, fear.

devastating to siblings.

never letting your child out of your sight, no matter how old they get.

living in a bubble of constant worry.

still washing, wiping, brushing, bathing, diapering and dressing your kid who is able to ride a tricycle and read 200 words but cannot do these simple self-help tasks.

picking plates and silverware out of the garbage.

cleaning up puke that was never going to make it into the bowl on her lap – because the bowl was in her way.

never having fresh-cut flowers or scented candles on the table.

always putting every pen, pencil, marker, pair of scissors and tape dispenser in a locked drawer because you never know who or what will be drawn on, cut into a million little pieces or taped together permanently.

never finishing a cup of coffee while it is still hot.

sign language, picture schedules and social stories just to go to the store.

always carrying a spare set of clothes, shoes and extra hand-sanitizer because poop happens – and happens again – in the most bizarre places and is somehow irresistible to explore with little hands.

feeling the glare of strangers.

being an advocate, special education expert, dietician, physical therapist, occupational therapist, speech therapist and consultant without a paycheck.

being asked the stupidest questions on earth – “Are you sure it’s autism?”

hearing the absolute worst attempts at lightening the mood – “It’s the age, she’ll outgrow it.”

many inside jokes between you and your spouse that are not all that funny.  “5 – 4 – 3 – 2 – 1…” – the seconds we count out loud when our daughter actually comes to sit on our lap and how long she will stay before she becomes physically uncomfortable being so close.

getting hit and kicked repeatedly by your child because they just cannot tell you what/why they are so mad.

never going on a ‘real’ vacation – one that isn’t prepped with exit-strategies and backup plans and is ultimately destroyed with tantrums and sensory-overload.

a revolving door of babysitters – once in a while you actually get to have one.

date night on the couch with a Top Gear rerun and Ben & Jerry’s and maybe sitting next to your spouse, too.

listening to your fellow Warrior Mamas kicking some serious autism ass – and holding them up when they feel beaten down.

praying – praying ever so sincerely that things will get better – praying every moment that scary things like seizures and self-injurious behaviors will not win – praying for progress, however small.

selling your soul and your story to legislators when all you really want is a nap.

telling your story and putting yourself out there as vulnerable and needing help – when really you just want to fix it and make others understand why.

loving your child so fiercely it hurts – it hurts so very much – and you would do anything and everything in your power to make their life just a little easier.

hard.

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It’s an Anniversary, Charlie Brown

Eight years.  EIGHT YEARS!!! 

~~~~

                    “I freaked out. I joined the Army. I went into business for myself… I’m a professional killer.”

                 “I hear that’s a growth industry.”  

 (“Grosse Pointe Blank” 1997)

~~~~

Well it’s more like five years when you subtract the time that Hub has cheated on me with the Army.

Seems like yesterday.

Well no – no, it doesn’t seem like yesterday at all.

I love you, Honey, but it’s been a LOOOONG road.  Albeit a blessed one with many more ups than downs, most is a literal blur.

Our story is like a drive-by shooting – with paint guns – it sounds fun when you’re strapping on all that gear, loading your weapon with neon pink pellets because you know how hilarious it will look to see your manly soldier all decked out in Pepto Bismol.  But then you step onto the game field and it’s a WHOLE ‘NOTHER STORY.

We met in August, 2001.

Moved in together two weeks later.

Within 9 months of being together, with a single late-night phone call we became fulltime parents.  “Sissy” was 12 years old at the time.  I was 26.  In feverish anticipation of her arrival, I had painted her room a delicate lavender, stocked it full of any and all “teenager” novelties I had left from my own room at my folks’ house.  I was just putting the ladder away when the doorbell rang.  Our Landlord needed the apartment and we had 60 days to find a new place to live.

We bought our house in August, 2002.

Christmas Eve, I found out we were unexpectedly expecting.

March 8, 2003, we were married.

The next eight years would be no less disorienting than riding the Cyclone drunk, strapped in backwards while having Pink Floyd blasted into your eardrums.

So for the sake of saving time, I will make two ‘short’ lists here:

Things I have loved in our 8 Years

Your smile

Our beautiful babies

Ranger TV in the backyard

Our handful of actual dates (NOT including the two in which you made me cry in public)

Our ability to be actual 50/50 partners through the understanding that reality means those numbers are fluid at any given time but always balance out in the end (or else you’d never hear the end of it)

You’re the Problem Solver

Your faith is unyielding

Your honesty, loyalty, integrity

Your humor

Banff Mountain Film Festival

Things that have sucked, but have made us closer and stronger

Deployments

4q

Feeding tubes, open-heart surgery, redeployments home

Cancelled vacations

Missed opportunities

Poop EVERYWHERE

PTSD

Autism

  

 

 

 

Happy Anniversary, My Love.

Baby, You’re the BEST!!!

 

 

 

 

 

 


Don’t Go In The Attic

There is an interesting topic of discussion brewing in the autism community – stemming from an otherwise “typical” conversation between an amazing group of moms navigating life with autism on board. 

After blurting out “PTSD” at a recent gathering of other Warrior Mamas, I thought for a moment my snarkyness had gotten the best of me and perhaps I had gone a little too far this time.  Following the longest and most awkward pause in conversation, in a room full of women I had never met before, the reaction so far has been nothing less than positively healing.  I think my fellow Mama did the most spectacular job bringing this topic out of the darkness and into the light >here<.

It seemed like a great idea.  Sergeant Major (SGM) had the day off today, the kids were at school and we decided to begin the arduous task of prepping for our ridiculously gigantic yard sale this spring.  FEEL THE PURGE, BABY is our new motto.

I don’t know what the hell I was thinking.

After less than an hour of sorting through boxes and piles of everything you can imagine I suddenly felt like I had just stepped away from the most horrific car wreck – where everyone is staring at me because they cannot believe I haven’t a scratch on me.  Except I am broken everywhere on the inside.

Five long years of everything I had planned to do lay before me tearing away at my heart, ripping my soul to shreds.  A set of small plastic pots from when my son begged for the third spring in a row to plant some sunflower seeds and watch them grow.  I had finally bought the seeds and now had no idea whatever became of them.  There were empty picture frames by the dozen.  The most beautiful pictures of my boy when he was three that never saw the light of day.   I stood there unable to move for what seemed like hours.  I felt stricken by those deep, dark, greenish eyes and how he must see right through me.  Every promise I had made to him that disappeared amid the chaos of 4q and deployments and autism.

Then there were the fairy wings I got RM to wear for preschool when she was three.  It had been Princess Week.  Most of the little girls wore their favorite Disney Princess gowns every day to camp beaming with pride from their tiaras down to their slippered toes.  RM wore the precious green wings long enough for me to take one picture outside of the school.  That was it.

Really, it was the absence of fruitless promises to my little angel that burned me.  There were no piles of projects never touched, nor dress-up clothes for her to grow up and fuss with.  Nothing of what one expects to share with their baby girl as they watch her grow into a young lady.  Rather, boxes and boxes of medical supplies and feeding tube bags.

PTSD.

It was more than four years of struggles and surgeries and the sweetest, lingering goodnight kisses (praying they would not be the last) hitting me all at once.  A powerful, silent undertow dragging me deeper into an abyss of emotion.  Filling my lungs with salty tears as I desperately flail to stay afloat – with autism on board.

I cannot describe how blessed I feel that in a flood of sobs I was able to tell my SGM how I was feeling today and that he understood completely.  He had been sorting through his own five years of wreckage, too.


The “Church Story”…

(This was first posted in July of 2010)

Last Sunday morning, I got up feeling adventurous. (My husband has been in an Infantry unit in Afghanistan since January, and our daughter was just diagnosed PDD-NOS/Autism Spectrum Disorder in February, after being born during my husband’s last deplyoment with a chromosome deletion and many medical issues, developmental delay, etc.)

I thought today seems like as good a day as any to try to take her to church. We had brought her every Sunday from the time she was born, even through the toughest times of her congestive heart failure and feeding tube days, until one day about 18 months ago – she began screaming the moment we walked into the building. I tried for 20 minutes to calm her not understanding what the problem was, etc., thinking it was a mood rather than anything else and she would eventually be alright to sit for mass.

It never happened.

Scores of dirty looks, impatient parishioners waiting for me to just give up and walk out. And I did. The beauty of that moment was that it prompted one of the active members of the parish to begin a dialogue of inclusion for special needs. Great! – Except that the accomodations the church made to make mass more accessible for kids and adults like my daughter weren’t going to help us if we still couldn’t get through the front door with her. And after a few subsequent attempts it seemed that we were never getting her IN the building again no matter what changes were made inside to accomodate her needs. The church set up a small, quiet room to simulcast mass through TV for those that were sensory sensitive like my daughter. Yet, we have still not made it to that room. So that brings us to last Sunday when I felt energetic and enthusiastic enough to try again.

Well, we made it through the parking lot to the door. THAT was an accomplishment. But when we got there and I motioned to go inside, my 4 year old just imploded. And it was heartbreaking. I could feel her discomfort at the very thought of just setting foot inside the door. Fifteen minutes of her screaming in tears outside the door, with me sitting calmly on the ground in front of the door patiently waiting. Dozens of people had come and entered the church. Most looked the other way as to save me from the embarrassment of their glare and some even felt compelled to comment. “Well that’s a toddler for you.” Or worse, “Been there.”

No. You haven’t been there.

I wasn’t giving up. So after a few more minutes – after the screaming had stopped – I slowly stood up and made my way through the glass doors asking her to join me (and her brother who was already inside with my parents). Even as she protested, I slowly stepped inside the door. Now there we were – her on the outside, me on the inside. I sat down on the carpet inside the door and opened her backpack as she watched me through the glass. I slowly and carefully pulled her favorite toys from the backpack and laid them out for her to see. I signed to her to come in and play. She cried.

As this was continuing, more parishioners would come and enter the door, give me a brief look of contempt as to why I was teasing my poor child on the outside of the glass – all alone – I didn’t care, I kept trying. There was one young father with a 1-year-old baby boy who took the time to ask me if there was anything he could do to help. I explained to him that she is autistic and has sensory issues and therefore had much trouble with the idea of coming inside the doors. So he sweetly dangled his baby boy in front of the glass like a prize for my daughter if she would just come in. I truly appreciated this father’s innocent attempt to help. He asked questions. He had compassion. It made the lengthy stalemate pass by just a little more swiftly.

I never did get her inside the door. But what I did accomplish in almost 90 minutes of trying was just a little more comfort than we had before. She tolerated me on the other side of that glass door for more than an hour. A couple of times near the end of our time there she did approach the door and even open it a peek. And though small a victory it was, I did feel victorious. I felt victorious the moment we stepped out of my truck and she took my hand just to walk up to the building. Everything she accomplished beyond that was pure gravy. And she DID accomplish a lot. She made it TO THE DOOR. Maybe next time she will step inside, even for a second or two. And I will keep trying.

That’s why we do it. She will sit in mass once again someday. We will join together as a family in a ritual that is of importance to us and it will be worth every hour spent staring through those glass doors cheering her on to come a little closer. I have to. I don’t know any other way than to just keep fighting the fight and keep pushing forward. It’s worth every dirty look, worth every ignorant comment. And I will continue to speak up and say, “My daughter has autism, and we made it all the way to the door today!!! I am PROUD!!!” Just as I said last Sunday to everyone who passed by us.

We do what we do because we just love our kids.


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