Sunday, January 5, 2014

Peace & Visuals

For a few years, different therapists have been using visual supports for Quinny- showing her a picture instead of giving her a verbal prompt.
And while the teachers and therapists have had wonderful success with this tool, implementing the concept at home has been hard.
I felt like it was anti- cozy: here, look at this itty picture instead of a verbal/ emotional connection with me.
And I was exhausted- setting up visuals, breaking down routines, actions, thoughts, emotions...can't we just limp along?
But then I wised up.
Just the sound of words, can be overwhelming not just to a kid with neurodevelopmental disabilties, but for most kiddos.
Giving a child a visual cue in place of a nagging mom, can help develop more independence, more self worth.
Blah blah blah...
So. I did it.
I even took a class at Portland State University one Saturday.
If I was going to do this, I needed guidance, and a phone number to call when in the middle of this horrifically hard organizational world, I could call and yell, "what the hell do I do now!?!"
But my friends, I bucked up, I did it, and I didn't even need to call for help!

Our first visual board was that for the morning hours.
I refused to use the visuals that the schools and therapists use.
Yes, it might make it easier for QLou to learn the method at home, with having the same visual- but I still couldn't get over the coldness I felt when putting lamination between me and my kid.
I could, however, get over it if I knew she was staring at a softer, more gentle image.
(Similar vanity barrier of mine when making her the sensory vest...I'm picking my battles, I promise).

For a lady mama, whose least able skill is that of organization, this has been a test of tenacity.
But I really do see the benefit, and if I ask my kids to work hard, working on becoming a best versions of themselves- I better be in the frey, right along side.

All magnetic!
They just scoot those little pieces to the "finished" side, once their to do is complete.

This is just the start.
Next I have to label all of our bins for toys, art, lovies...
Then, a few visual boards to help with certain "sticking points" (ie. Fixations).
One for in the home, one for out and about.
Here is the start of the home anti-fixation board:
(Quinny gets stuck/ fixates when her anxiety is getting the best of her- they call it "coping behaviors". She'll hold on to a single thought or train of thought with every ounce of soul that kid has got until I either a. Give in or B. Meltdown.
Having a visual "list" of ways she can self-regulate will teach her coping skills that will come in handy in her life, tomorrow and when she's 35.
(Ie. She feels the anxiety rising, she goes and reads a book, or plays her puzzle, etc., to calm and distract).

With a beer in my right hand and magnets waiting to be cut, in my right-
I wish you all a beautiful, joy-filled new year.
May we all choose to make this world better with simple acts of kindness and endless amounts of empathy!

Wednesday, December 11, 2013

I, Jillian, Threw a Chair

I did.
I threw a chair.

A couple months back, I hit a low, and I didn't know what else to do- so I threw a chair.

I felt like my whole world was beginning to crash down, spiral out of control- and I had no more energy or ideas on how to stop it.


After a couple weeks of school, Quinn began to quickly unravel. The years we had built a "tool chest" to help her, and us, cope and recover from the barriers brought on by her neurodevelopment disabilities- they stopped working. Her developmental pediatrician prescribed a new medicine, and it brought back seizures, and even stronger un-wanted behaviors. Stopped the meds, started more interventions and then, for the first time, we had truly lost our Quinn and were solely surviving the behaviors. We were battling a whole new set of rules and there was no rule book in sight. It was scary. So scary.

When Carter turned 18 months, she and Quinny got sick- 22 days of throwing up and flooding out. No doc could figure out what or why this was happening- when it ended, they assumed it was a virus or bacterial infection and moved on. Quinny moved on too- Carter never really recovered.
This past spring we began to think (we as in her allergist) that she was having an allergic reaction to the sun, then by mid summer we knew it was something more serious.
In the HEAT, she would melt (anything above 74 degrees). When I say melt, I mean she would melt. She would collapse, swollen face, red as licorice, sweat like a marathon runner and not recover for hours. She was drinking more than 100 fluid ounces of water, a day. She stopped developing with verbal language, showed signs of extreme fatigue and she stopped growing; to name a few of the issues.
Our naturopath said it was some kind of a Mitochondrial disease- the western docs spent months doing blood draws, urine tests, stool collections- nada. They couldn't figure out what was wrong, so they blamed it on "behavioral" issues. I put in a request to see Kaiser's pride- pediatric neurologist, Dr. Konkol- it was now a waiting game until his appointment.
This was scary. So scary.

Enrich All was going, the organization that brought me my self worth was leaving my side and I was stripped of this fictitious support that aided me the ability to believe in my own abilities, creatively, intellectually and professionally. It might have been a facade of emotional stability for me, but for me, it was my stability.
And it was leaving.
And it was scary.
So scary.

And then. For fun- my body was giving out.
In college, my last year in Buffalo, I started getting these random bouts of exhaustion, GI issues, painful legs, weak legs… and for the most part I could ignore it, adapt, and in a few weeks these series of lame-ness would subside and I was back to normal Jill.
During my pregnancies, the issues were worse, but one could blame that on pregnancy, right?
Then I had Crew, and the bouts of exhaustion and pain became closer together, and were stopping me in my tracks.
I would be on mile 3 of a 10 mile run, and my legs would collapse and I would pee myself. Never left home without my cell phone, because I never knew if this was the run I would need to be picked up a few miles into the country.
And by end of summer, I would have weeks where I could not even pick up Crew.

I started to actually follow through with the phsyiatrist, rhuematologists, and neurologists. But every time a test would come back, it was normal.
I was devastated and embarrassed.
Was I becoming one of those chicks on Law and Order who create a life based on hypochondria?
All three gals in our family were having significant, life altering symptoms, that no one doctor could fully identify.
I kept going back to my therapist, begging for some kind of mental health diagnosis that would explain these health issues that seemed so odd and too far fetched- depression? Anxiety? Literal hypochondria?
She said Anxiety was an issue in my life, caused by my ADHD- so I did cognitive therapy and took medication for my ADHD- my anxiety went away- my physical ailments did not.

My hope was fading.
What the hell was going on?

One day in November- I threw a chair.
I was full of so much anger and confusion and fear I didn't know what else to do.

After: I sat on the toilet and cried my eyes out like a four year old kid.
And decided, then and there, to stop distrusting myself.

I decided the last thing I wanted to be, or represent, was a victim- the whole "why me" "it's not fair" bullshit has always gotten my goat. Couldn't' tolerate it on others, and got nauseous when seeing it on myself.

I needed to trust my gut.
I needed to trust my cognitive abilities.
And I needed to get tougher- emo wise.

And I did.
Made the choice, work hard, and did it.

A month ago I took charge of Quinny's path. I no longer waited for doctors to Guinea pig my kid- I called and emailed, called and emailed every professional in my books on neurodevelopment disabilities. I finally reached a doctor from the University of Washington who was a researcher for FASD (for 25 years), and now has her own organization helping families navigate the specialized field.
She was full up with clients, but she stayed on the phone with me for an hour and a half, helping to guide me in the direction we needed to go.
I got Kaiser (our insurance) to listen to our appeal on paying for specialized supports.
We got the county to identify the severity of her barriers and they opened the doors to more therapeutic assistance.
Quinny's IEP team at school circled their wagons, and promised to do everything they possibly could to help- and they have been living up to their word.
We've got her back- still up and down- but we're not scared anymore: we're getting educated.

Today- Carter was OFFICIALY diagnosed with MITOCHONDRIAL DISEASE!!! By her (and our) beloved pediatric neurologist, Dr. Konkol. To receive such a diagnosis from a western doc is a big deal, a lot of people give up hope of ever getting medical care, and some die waiting- but I got back in the fight and advocated and made sure they knew they were going to take care of our babe. Not to mention Dr. Konkol is one of the best pediatric neurologists in the nation- AND he is obsessed with our naturopath (he is even teaming up with her to help with Carter's treatment plan!!).

My neurologist told me last week that she thinks my symptoms are showing mitochondrially- I have significant leg muscle atrophy and peripheral neropathy type stuff- FINALLY some answers!
Going in for more tests in two weeks, but with Carter's mitochondrial disease diagnosis (mitochondrial diseases are passed down maternally), and with some answers coming our way- I am feeling so much more sane.

And professionally?
Not so scary after all.
In fact- I am in love with my new job, the organization we joined and the light of the future.
I really AM capable.
I really can do it-
and with the crutch of EA taken away, relying on my own abilities and not a title of success, feels true, and real and impactful.

We have a long road to hoe.
Quinny's abilities and barriers will forever be manifesting and needing a lot of therapeutic adjustments.
Carter's disease is life long, can get scary, is expensive and a true lifestyle commitment.
The time it takes to take care of myself is going to be a daily battle and force of guilt.

I'm not crazy.
I am capable.
We have Jake. Amazing, wonderful, rock solid Jake.
We have each other.

I didn't break the chair, when I threw it.

Wednesday, November 27, 2013

A New Chapter: Professionally.

December 1st, 2013 will mark the day Enrich All (my beloved non profit) will be no longer.

The time has come, to grow and expand- and we (Enrich All) has been offered a firmer foundation in which to grow.

Our message, our mission, will be carried over to the non profit Housing Independence.

For me, these four years have been a constant learning experience.
I had (and really, have) no idea how to run a business that experiences such constant demand for growth.
The time, energy, emotional and cognitive stamina it takes to run and grow such, is beyond what I (and my partners) can do any longer.

Enrich All's vision of what Social Enrichment should look like, for adults with developmental disabilities, has proven itself to be a reliable, engaging, goal exceeding, self worth building, model.

Over the past 4 years of operations, Enrich All was able to enrich over 100 adults in Washington and Multnomah County. Pushing and encouraging each client to be their best self, by teaching the skills that are needed to carry out and carry on, a fulfilling social life.

I could not be more proud of this little engine that could.

The two girls who carried this torch with me- who stood in when the going got too tough, who ran when I needed to walk, my partners in crime: I am honored to have had them steer the ship with me, and horned to call them my friends.

Our staff of 12 Providers: it was their passion and dedication to the vision that fueled the boat- and for that, I am eternally grateful.

It is a new era for Enrich All- we now get to focus our time and our energy into program development while continuing to grow our enrichment sector- giving countless more adults with developmental disabilities, the opportunity to succeed socially in their communities.

So grateful for the lessons learned.
So grateful for the relationships built.
So grateful for the souls who poured their passion into the vision and made Enrich All, Enrich All.

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!