When a Quirk becomes a Disability

Swimming lessons started back up at our local pool. In Lou's class, last month, she had 3 kids (including herself) in the class. It took her a few days to feel comfortable, but eventually she got her groove and had a wonderful time.
She definitely had some quirky behaviors, but was able to learn and grow, building her skills and self worth.

This time around she is one of 9 (yes, 9) kids:

More kids.
More chaos.
More sensory sensations.
More touching.
More noise.
More unpredictability.

More Quirks.
More rejection.
More disabilities.

Such a crazy position to be in: watching your child struggle, assisting her (the best you know how) to get her through the program- feeling helpless and empowered, all at the same time.
Helpless:
How much I would pay to take away Quinny's barriers; to allow the world to see the little girl we get to see. As a parent you just want to make it better, easier...
Empowered:
I was given the opportunity today, to watch her brain in action, when her neurological system was short circuited. To see where we need to focus our therapies, to give more tools to Quinny, so that SHE can show the world what a rad chick she is.

It just shows us that kiddos with cataloged disabilities have all the abilities of a typical child- they just need the tools, creativity, patience and ambition of those around them, to thrive.

Quinny starts private swim lessons tomorrow with the teacher she adores and the pool she never wants to get out of. The proper environment for her to learn the skills and grow in her self worth.

This ain't no joke peeps- parenting is HARD.
But I am having the time of my life- learning and loving.

Aspergers: A Dual Diagnosis

We got word today that after a year and a half, five therapists and a dedicated Pediatric Neurologist putting all of Lou's puzzle pieces together, we have a dual diagnosis:

Aspergers (autism spectrum disorder) with Sensory Processing Disorder.

I can't describe the relief, excitement, hopefull-ness Jake and I felt when we were handed this information: confirmation of what we had been feeling and thinking for a few years now.

While it does seem odd for parents to be "excited" when reaching a label that has, normally, negative connotations associated with it- for us it gives Quinny and our family, a community to grab a hold of, peers for Quinny to relate to, and many more answers for our journey we have been down, and will continue to paddle on.

A label is just a quick way to explain behaviors that are already in place- it gives Quinny a foundation to hold onto when her quirks are being questioned by those around her; many could see this as her ball and chain, we see it as her compass with the promise to empower.

It explains the wiring of Q's brain and how and why she does what she does that sets her apart from the typical child.

We start even more therapies soon, and will be organizing peer play groups- finding other critters in surrounding areas that are on the spectrum. Giving Quinny the opportunity to feel "normal"- to connect with peers who get her gig, will be vital to her self worth and neuro-developmental growth. SO much on the horizon.


So excited to watch this incredible kid do her thing- SO proud to be her Mommy.

Teaching: tolerance. love. acceptance.

We have always known that Quinny's largest barrier stands in the way of her social interaction with peers. Her anxiety of kid's unpredictable (and unforgiving) behavior paralyzes her abilities and highlights her disabilities- although we have seen her interact (and struggle) with youngsters (mostly close friend's kids) numerous times, and have been aware of these hurdles, it was a recent birthday party of one of her classmates, that I saw the onslaught of intolerance presented to her by her peers.

Within minutes of arriving to this bash, Quinny started to approach a few different kids, asking if she too could join in on their game. She was met with, "Go away. We don't like you Quinn." "You're weird." and other heart BREAKING verbiage. I immediately jumped in to facilitate kindness and compassion- soon realizing I needed to focus more on inclusion with Quinny than parenting other's kids. Carter and I became Lou's entourage: playing, laughing, encouraging. Reminding Lou how rad she is, and how lucky Carter and I are to be her friend.

Even so, Q continued to try and engage her classmates- the more she tried, the more rejection was sent her way, the more Mr. Anxiety built up her barriers. Soon our positive reinforcements meant nothing and Lou was left with shame, hurt and a bundle of quirks (flapping of arms, animal noises, negative language)- it was time to go home.

Not one time, at this shin dig, did another parent talk to their child, correct ill behaviors, educate on differences- it was Lou against the Lions (with her side kicks, Mom and Sis trying to compensate). When we got home, the kids went to bed and I cried my eyes out to Jake- I can't even describe the pain I had/have watching our precious daughter be treated so horribly. I knew we had an up-hill battle with friendship building, but I had no idea how painful the process was going to be.
I was so angry at the children.
More so:
I was so angry at the children's parents.
A few weeks later I picked Quinny up from school and asked her how her day went, our convo went as followed:
Me- Did you have fun today baby?
Q- The boys pushed me over again Mom.
Me- Oh honey, did you tell teacher Lisa? Adults are there to protect you and make you feel safe.
Q- Teacher Lisa helped me mom.
Me- oh good. Which friends did you play with today?
Q- No friends mom.
Me- Hows come Lou?
Q- Because it hurts less to not have friends (EXACT quote...and one I will never forget).
CRIED my eyes out.
Oh. My. God.
That was it. No more.
I was going to do everything in my power to teach the world about differences. To educate parents about disabilities, so they, in turn, can educate their kids. I was going to be that crazy mom who spent her life advocating tirelessly for kindness and TOLERANCE.
Of course we intervene as opportunities arise.
Of course we are in constant contact with her teachers and therapists but we need to do more- prevent more.

I intend this blog to be a platform for that. To remind the greater community of the simplicity of teaching kindness to their children. To remind their kids that not everyone is the same, and it is in those differences that we can find beauty and love.

That to change the world, we must offer those in need a safe place to grow, thrive and be filled with self worth.

Gluten Free. Casein Free. Quinny's Freedom?

After a VERY challenging few months with our Lou- it was time to move forward with a medically proven diet for kiddos with neurological disorders- Gluten and Casein free. Two days in: I see a HUGE (truly, HUGE) decrease in her challenging behaviors (anxiety, aggression, anger). Jake sees a HUGE change- "Our sweet girl is back!" he whispered to me while making breakfast. Even my mom (the skeptic) sees the difference! Best Bit?

Quinny said to me this afternoon: "Mom, my body feels better today." Is this HOPE I feel? Could we have found a passage for Lou's brain to heal and thrive? Could this gluten free/ casein free diet mean Quinny's FREEDOM? Fingers crossed people. Fingers crossed.

Bit of a Meltdown...Mommy Meltdown.

Today was my turn for a bit of a meltdown.

Chalk it up to the combination of feeling wildly vulnerable, a wee unsafe and caught off guard- but tonight the tears started coming...and coming...and coming.

I'm learning (slower than I'd like) that I can't control the world around me, but I can control the world I choose to live in.

The world I choose to expose my children to.

I am not a believer in sheltering a child, especially a child with special needs- but I do believe in minimizing situations, places, ideas that un-do 187,000 hours of soul you put into building, guiding and developing your children's self worth.

This could be one of my greatest challenges of parenting- when to protect and when to conquer.

Tonight my parenting (more so, my child's reaction to her world) was challenged by a close relative- again.
Frustrating.
Hurtful.
Exhausting.

What I should have done was take my babies and head home; what I did, was sit and try to explain, educate, and plead for more empathy...tried it to tears.

I believe this is a pretty clear sign that trying to control people's behaviors around us will drain me of my purpose- but educating and advocating to those who want to listen, will fuel my nerves, my gumption, my fight.

To all who give a few minutes of your day to read our blog, to learn about the scallywhompiness that is our world; to those who engage their heart and honor our fight- I can't thank you enough.
Truly.

Quinny's World and SPD

Imagine:
The itchiest sweater you've ever worn, on a 100 degree day.
Your least favorite music playing so loud you can't hear yourself think.
Rotting food and dog poop smell surrounding you.
Spiders crawling all over your body, all the time.
Staring into the sun with no shades on.
And with all this going on around you, you're given an organic chemistry textbook and told to read 3 chapters in 15 minutes-
You're expected to get an A on the quiz.

That is life for our brave, beautiful, amazing, wonderful Quinn.
Everyday. Every moment. Everything we ask (or the world) asks her to do.

The world is a scary, overwhelming, unpredictable place:
Eating.
Wearing clothes.
Leaving our home.
Brushing teeth.
Talking to a friend.
Driving in a new direction.
Learning how to hold a pencil proper.
Combing hair.
Mommy leaving your side for a moment.
Learning new motor skills.
Music.
Loud talking.
Sunshine.
Laughing.
Snuggling.

Jake and I always had a gut feeling that our normal, wasn't the normal normal. We knew that Quinny was quirky and sensitive of light, sound and touch- but as she got older, anxiety and fear took over her ability to keep developing on track and what once was a quirk, turned into a ginormous hurdle for her day to day life.

Jake and I both have been frustrated by the fact that most everyone would tell us that we were over reacting to her quirks. That she was fine and normal and we just needed to chill. We have gotten so tired of justifying our parenting, defending the lifestyle we have had to adopt- to make the world less scary, more functional for Q. I understand to most of the world, Quinn's barriers seem small- but to those who spend hour after hour, day after day in her world, they will quickly learn how much bravery and tenacity this little girl has, just to get through a normal day to day task. She has always had this incredible ability to adapt to the world around her- What people never see is the fear, anxiety and meltdowns that come once she is in the safety of our car or home.

Every morning, Jake and I spend an hour trying to get her to feel safe enough to get dressed, to get going. She knows once she is dressed, it is time to take on the world- and to Quinn, that is asking her to jump from an airplane blindfolded everyday.

By 7a, everyday I have to be dressed, fed and ready to start the day. I have 20 minutes to get Carter dressed and starting on her breakfast, and then my hour long Quinn transition begins.
Quinny has the ability to feed herself, but the task of completing a project of "eating the meal" is beyond too much for her. This is the case with most activities in her life (she knows how to put a shirt on a off, but to "get dressed...it's too much and won't get done). We learned early on that distraction is the best way for food to enter her system. She gets to watch her morning cartoons, as I feed her her breakfast, spoon by spoon, nibble by nibble. After every spoonful of cereal, she gets a kiss and a "I'm so proud of you baby" in her ear. She never responds to it, but I know she hears it, and it helps her get through the difficult activity.
After she is fed, its time to brush teeth and hair.
Both are incredibly painful to her (imagine thousands of tiny needles in your mouth and scalp), so she learned, early on to hide from me. Now, she is willing to go into the bathroom with me, but will sit in the corner with her head tucked down and her hands covering as much of it as possible.
We have a routine of singing songs throughout to engage her and make her feel more safe. Carter also helps this along, by allowing her big sis to help brush her teeth. (Carter has become a HUGE comfort for Quinn. We think she is able to see the world from a different perspective- "oh, brushing teeth doesn't hurt baby sister? Ok, I can do this too..."
After pouring 2 gallons of leave in condition on her hair, we comb inch by inch, just brushing enough to get tangles out.
Normally we finish those activities by 8a- I have a few minutes to pack her backpack and get anything else ready I need to...clothes come next.
There are only certain fabrics and types of clothing Q will wear- socks and underwear rarely happen. Jeans- never.
I have to put her top on first (dresses mainly), and then I wait until two minutes before leaving. If I put her pants and shoes on too early, she will take them all off and start to fall apart. Just knowing she has to leave the comfort of her own home, gets her so anxious that anything on her body is just too much- especially anything from her waist down.
Getting her to agree to put on the rest of her clothes (shoes, pants and coat) takes a process of positive reinforcement. She gets to choose a sticker after each item and put them on her chart. We have never needed a "reward" for filling the chart- I think having an activity that is positive and fun (and distracting) for her while doing something that physically hurts her and emotionally overwhelms her, is enough to get out the door (most days).
Finally- we're in the car!
Shoes come off.
Coat comes off.
Pants come off.
5 more minutes of re-dressing when we reach location and 3 more stickers (sometimes pennies when were in the car).
And we're out of the car....

It's getting easier...everyday...baby steps.
Between therapy, and me being home with her, we are seeing wonderful progress!

Before this past week, there has only been ONE time in her life where Jake and I got to lay with her, snuggling her and just holding her. (Year and a half ago, she was doped up on versed at Dornbechers, right before getting her chin stiched up. We snuggled the shit out of her- realizing what we had been missing all of her life!)
Just this past week, she climbed into bed with us, and ASKED us to snuggle her! Jake and I both cried our eyes out and soaked up every ounce of her sweet warm, wiggly body. After about 3 minutes of snuggles, she told us, "ok, I need space." It was one of the most amazing moments of our life.
Every night since, she has wanted more and more snuggles- and we HAPPILY oblige. :-)


This little girl is truly the bravest human both Jake and I have ever known. She faces her fears every single day of her life, working her tail off to make life just a little more manageable. We are beyond proud of her and her wonderful, inspiring abilities. God knew we were meant to be her Mommy and Daddy- and we could not be more proud of our daughter.