Friday, October 25, 2013

Best Uncle Award

Quinny had a pretty intense meltdown tonight. And we weren't in the safety of our own home.
Uncle Zach, who normally becomes overwhelmed with the intensity of his niece's meltdowns, became instantly protective of his "daughter" (as he refers to her).
He grabbed her coat, and said to me, 
"Put them in car."

And I did just that.

When we got home, and had our baths, read our books and snuggled the sadness out of one another- Uncle Zach joined Quinny at the table, while she ate her berries. This is what happened next:

Z. You ok?
Q. I'm ok?
Z. You ok from tears?
Q. When I cried earlier
Z. You had lots tears. You ok?
Q. Ya I feel safe now.
Z. You know. You pretty foxy kid. Pretty foxy kid.
Q. Foxy!?! Uncle you said foxy! I'm a girl!

And as I watched on with tears rolling down my face- he hugged her.

Zach Snell, hugged his Daughter Quinn.

For those of you who are lucky enough to know Uncle Zach, you recognize how powerful this moment was.

He and I have been working for six years together, to shine up his emotional and social skills- never, ever, have I witnessed him be so connected to a moment.
He had empathy
Verbal Connection.
Verbal engagement.
Physical touch.

Watching those two souls connect tonight, was an extraordinary gift.

One I'll never forget.

Monday, October 21, 2013

Medicating a Child: my two cents.

For most of my posts on Quinny, with regards to behavioral and lifestyle interventions- I speak freely on the natural and therapeutic approaches we use.
I speak about her Occupational Therapy.
All the other alternative therapy models.
Her supplements.
Her diet.
Our parenting style.
Our family structure.
Our lifestyle.

But I realized I have never spoke about her medication therapy.

Until today.

The debate over medication and children, has been in full up-roar for generations.
And it seems it gets more and more heated as years go on.

Which is good, really.
The concern, the debate, the conversations over "over-medicating" our children, is a GOOD thing.
The judgement and stigma attached to such decisions- is not.

If my conversation about medication can give some insight into the decision making process of medicating a child, or judging a family on doing so- I am happy to share our story.


Quinn was four.
Her aggression and agitation was running her life, and the life of her baby sister.
We needed to keep Carter and Quinny safe- and after exhausting ALL of our therapeutic and parenting options- we made a plan with her Developmental Pediatrician to try out Risperidone.

We started on the lowest dose possible (.25ml/ day), and since then, have never gone above (1.0ml/ day).

I say, Risperidone "takes the edge off", for her.
It allows her to grow, development, and soak in all of the therapeutic interventions, life skills, and actually FEEL the joys of life.

I've always said:
We have Quinny, and we have behaviors.
When the behaviors take over our Quinn- time for a new plan.

The scary bit- the bit that eats away little smidgens of my soul every day, is the knowledge that doctors and scientists really don't know the long term effects this and other drugs has on a developing brain.
Some docs say they are "safe", but in reality- there are not enough long term studies done to truly know.
It is the worst case scenario of guinea pig, I can think of.
And we're playing it.

Every. Single. Day. I ache with the uncertainty of our decision.
Are we doing the right thing?
Is this helping Quinny become the best Quinny she can be?

But when you have a four year old who self-harms and harms others- and you've been working your ass off with every doctor and therapist for four years, trying to holistically and naturally change such behaviors, constantly monitoring and intervening, never ONCE raising your hand to any of your children and even rarely raising your voice- we made the choice that was right for our child and our family.

Quinn's therapist said to us:
Would you deny a diabetic child, insulin?

And although Quinny's medication isn't keeping her alive- it is giving her the chemical make up she needs, to have a more functional brain- a more functional life.

Since the day she began taking Risperidone, to day present- we have not stopped reading, learning and trying new ways to reach and support Quinn.
We fall asleep with books on our tummies, have attended seminars and classes, always present at therapy sessions, picking the brains of those we trust, and we have spent over $8,000 this year alone (not including the extra money per month on better food), on supplements, Naturopathic Doctor, alternative therapies.

I haven't had a hair cut in over a year.
My eye brows haven't been waxed in maybe two years.
The make-up I wear, are the freebies from my Mom's Estee Lauder prize thingy.
Jake buys all (ALL) his clothes at Goodwill and Garage Sales, and I sew up holes and re-size/re-purpose clothing to extend their life.
We rarely eat out.
I trim the kid's hair every few weeks, so we only have to go in to the hair cutter once or twice a year.
We haven't been on a vacation for years.
Birthday and Christmas gifts are either homemade or under $30.
I gave up my weekly allowance (and did yard work for my parents every saturday morning at 5am) for months so I could fly to two weddings this summer.
We live in a (full of love and joy) two bedroom bungalow for God's sake!

We do this, so we can support our kids, our Quinn, in every way possible.

So that when my heart starts that daily aching- I can remind that pumper, that we truly are doing everything possible, and if in twenty years we find out that Risperidone was harmful- we will have peace.

But here is the gig:
If I just met someone, and they didn't know what all we do and have done for Quinny's supports but they knew we used medication- we would be judged and thought of in such a dark light.
And we have been.
And it hurts (it shouldn't- but it does). In fact it hurts maybe the most of any other kind of judgement- because when you put your entire soul into a process, like parenting, and someone smears such an intimate process, it soils not just who you are as a parent, but more so, who you are as a human.

There are two thoughts I want to leave this conversation with.

The first, is to encourage parents, who are or will be medicating their child- to do your homework.
To ask numerous doctor's opinions, read medical journal/studies on that particular medication.
Think about and research alternative ways to boost your child's systems with FOOD and supplements (endless research on how different types of food can create cognitive, emotional, physical and behavioral barriers).
Always incorporate THERAPY (how is a child to learn strategies for coping in life without strategies taught?)

The second: have conversations, ask questions, hand out helpful research information- but for goodness sakes- BE KIND! Drop the judgement and give a damn hug!
Most parents who are at the point of medicating their child, is living a very challenging journey. Even if you don't agree with their choices- encourage them with KINDNESS and love! Parenting is a hard gig with typical babes- add a wee one with special needs and hold on to your socks folks- the more hugs and acts of kindness, the better!

Wednesday, October 16, 2013

Equine Therapy: Horses & Lou

Equine Therapy (aka. therapeutic horseback riding) has been used for therapeutic purposes for years.
Kids and adults, with disabilities, have seen significant gains in their core strength, fine and gross motor skills, sensory needs, self regulation abilities, self esteem, confidence and trust, among many other.

Quinny's been obsessed with horses since I can remember- she has memorized names and characteristics of different species, never getting enough books on the subject. I can't tell you how many times she has asked for a "Shetlend Pony" (whatever that is).

A couple years back, we brought her to a riding stable that specialized in therapeutic riding- but she was just too young.
I knew this form of therapy would be life changing for her, so when I found out that there was a fabulous Equine Therapy stables in a town, 15 minutes from our Forest Grove home- I drove over and signed her up!

I was still nervous about safety and attention span (she literally can't remember things, like not walking behind a horse, unless it is 2 years of constant repetition of such)- but I met her instructor (Mardy) and KNEW she would be ok.

Mardy is similar age to my parents- she is a mother of six and has been an instructor for special needs kids for 10 years.

The way she ENJOYED Quinny and her questions.
How she goes at Lou's pace (never rushing Q through an anxiety fixation, but instead just working her out, WITH her).
The passion she has for horses, and can share with Lou.
And the excitement she has for Quinny and the progress she is confident we'll see.

We've got a winner.

This past Monday, she had her first lesson:

She was SO excited.
SO calm.
SO attentive to her horse's needs (her horse's name is "Pony Girl"...they were destined to be partners").

She's been telling the world she has a horse and gets to "canter" when she practices really hard.
She asks me every day if she could go ride her horse, so she can get her practice hours in.

I tell her: Every monday, from 2:30-3:30.

Never, in a million years did I think one of my kids would be into horses.
In fact, I thought horse riding was kind of an intense hobby, full of intense people who were just not my kind of folk (and yes of course, not everyone in the horse world was/ is intense. It was just my 12 year old brain generalizing).

Two (more) important life lessons I have learned while doing this parenting gig:
1. Ride the ride WITH your kids.
You never know what will be their thing, and if we try and push our own agendas on them, it might leave their souls starving for their intended purpose.
And #2:
Those quirky, intense, sometimes odd-ball folk that didn't suit my fancy in years past- those peeps have become, truly, my favorite humans.
Their daily truth, the way they live their lives with no apologies and no agenda of fitting in, is beyond inspiring and fulfilling.

Maybe our sweet Quinny will become one of those crazy obsessed horse folk- the one's you can't get out of the stables. If that is the case: I better find a place at the farm for her snacks!

Monday, October 7, 2013

Pumpkin Patch (OUR Pumpkin Patch)

In years past, we've gone to a new Pumpkin Patch each October.

Every time we go, we leave with a sensory OVERload little lady, and a $60 bill.

Last year (and this spring at the "Tulip" Festival), we declared then and there, that we would re-route our farm festival enthusiasm, to something that suited the enjoyment of all of our wee ones.

For me, the point of a Pumpkin Patch is to have kids fill their imagination bins with fall fabulous-ness.
To have a child get dirty, and stomp on Pumpkin vines.
Watch the joy overcome a kiddo, when their perfect pumpkin is picked- and watch the wonderment of the adventure it took to get to that pumpkin.
And most importantly- having an opportunity to be apart of a working farm.
Feel, taste, smell...GOODness.

This year we kept things simple (really simple): Pumpkins.

The kids and I will be starting a new tradition with pumpkins this year- bringing small bits of our family farm to the door steps of some family and friends.

A tradition of giving and sharing.

But for today- PUMPKINS!

Saturday, October 5, 2013

Sensory Vest

It started great.
It is getting rough...real rough.
As her Aid put it:
Their spending her school day managing her sensory needs, and not a whole lot of "schooling" is happening.

Managing her sensory needs includes:
Joint compressions- 3-10 times a day.
Heavy lifting jobs to the office twice a day.
Visuals and constant de-escalation processing.
Supplements given (at the office).
Quiet time at her special desk with her miniatures to help her calm.
She also wears head phones throughout most of her day, and is allowed to sit away from circle time.

We have talked shop with her Sensory Occupational Therapist, her Pediatric Naturopath and her Developmental Pediatrician- typical school may, truly, be just too much for her system.
Quinny says it is too much for her system.
I KNOW it is too much for her system.

But for now- as we try a few more tricks up our sleeves- I decided to make her a weighted vest.

In the Sensory world- kids who have a hard time "Feeling their bodies" will wear a weighted vest, to apply constant pressure to the nerve endings. It gives a sense of grounding to these kids, which helps with anxiety and the challenging behaviors that come with such (this is also why we brush Quinn and give her joint compressions...and the "heavy work").

These weighted vests look like industrial, therapeutic vests.
As if Q needed another reason to stand apart.

SO- what is a mom to do?
Add a little something to the something and come up with something FABULOUS.

I bought a Denim Jacket ay Target, and cut off the sleeves.

Then I used the sleeves as the fabric needed to sew in pockets, inside the vest.

(In these pockets, I'll put 1 pound bean bags I made with rice and flannel)

Sew the "sleeves" in and up

And you have a CUTE sensory vest!

We'll see how the next few weeks go- but one thing is for sure:

We feel blessed to have a school district that is so rad, flexible and child centered.

We feel SO blessed to have a kid who is totally unafraid to try.
And TRY she did.