Saturday, February 18, 2012

Quinny's World and SPD

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:
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.
Loud talking.

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'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 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.


  1. Oh, Jilly. I can't imagine better, more patient and compassionate parents than you and Jake. I hope you realize just what a God-send you are to that little girl!!

    I don't know much about SPD specifically, but I know it's one of the many issues plaguing kids with autism and autism spectrum disorders. I don't know if you've come across them yet, but there is two books by a very well respected chiropractic neurologist named Robert Melillo called "disconnected kids" and "reconnected kids" that I highly recommend (I think they're like $10 on amazon). There's a lot in those books about helping nurture kids brains and trying to figure out the parts of their brain that isn't firing and getting the correct stimulation to it. Also, google the "Brain balance centers". BBC is a chain of clinics started by Melillo and similarly trained MDs and chiropractors who work with these sorts of things, and I have heard that they work wonders.

    I, too, am working to complete my post-graduate degree in neurology so I can do this sort of stuff. Who knows, hopefully one day soon I can help you give Quinney's brain just the stimulation it needs and we can see even more progress and more snuggles :)

    Stay fabulous,


  2. Oh my! What an education. It sounds like our Cris - who has to do very intentional parenting to her adopted boys. But what rewards. Bless you for your patience, encurance and love. It will pay off in the end!


    Bev (Dave's sister)