The Get-away (& my therapy)

As I wait seated on a flight departing the airport I am both excited for such a rare opportunity to go see a dear friend hours away and yet my mind is in systematic mode as I go through all the preparation (mentally) which I did in order to feel secure in leaving my babies in the caring hands of others.


Preparing and organizing for leaving without my children in tow (to my surprise) was much more work than packing for all of us to go on a trip. Updating detailed instructions, contacts, safety routes, food choices/preferances and all the supportive actions for the kids always evolving medical issues and Autism sensory/behavioral symptoms... whew-- apparently I have more brainpower than I give myself credit for! I joke that I have propetual brain fog (in reality I do), yet my memory banks are submersed in a wealth of tips/tricks for caring for these wonderful and complex little beings. Now I understand why God gave me the skill set of writing, details & systems. =>


This is the FIRST time EVER I have gone away anywhere MYSELF without my children or my husband & partner. He drove me to the airport and reassured me several times *not to worry* and that he was looking forward to this time with the kids. A man pure of heart indeed. Team K is with the kiddos for a couple of days, too. They are an extension of our family and I am proud of these two, just as if they were my own daughters. Again, God has provided for us in the unexpected, yet magnificent bond the children have with these wonderful young people. I realize and am grateful that I can find peace in knowing just how much fun they will have together and they will be safe. This is something I didn't know that I could ever feel & and it's an infinitely precious gift.


I did not tell the children I would be leaving because only Roo would comprehend slightly and her anticipation would lead to enormous anxiety and sleep disturbance, maybe night terrrors. On a tangent, sometimes I think her umbilical cord were never severed, but I know with time, nurturing, & consistant celebrating her uniqueness-- she will float out on her own more & more (knowing I'm always there).


The kids were asleep when I left so now I'm left reminescing of the parts of them that I imagine & can sense always-- their tiny hands grasping my fingers, the soft scent & texture of their hair, & each child's unique way of connecting with Momma.
~ For Bella: her pudgy short & satin fingers running across my fingertips when she's tired, her requests for butterfly & eskimo kisses. The way she tells me "Mommy-- MMMmmmmAAhh!" twice before I can leave her room (for her goodnight kiss).
~ Roo's dainty & spindly fingers entwined in mine and her desire to be on my lap with her fidgety body & the way she will give me her best eye contact when I allow her hands on my face.
~ S-bear is part animal, as he's a nuzzler.... he always buries his face in my legs or my shoulder. He tells me "baby koala?" signifying his desire to be cuddled and giggles through his "cat kisses?" requests.
~ SJ's sweet & squishy little stature. Her insistant requests of "up. up. up." & the dynamite hambone spirit that drives her petite frame. The way she can melt into my body while cozying up & the velvet feel of her dark skin.
Through these thoughts it's as though I can inhale their individaul essence & carry them with me.
MY HOPE FOR YOU READING THIS, IS THAT IT WILL MAKE YOU THINK ABOUT THE GIFTS OF YOUR SENSES & THE GIFTS WE HAVE IN HOW THEY PROVIDE SUCH INSIGHT TO EXPERIENCE THOSE WE LOVE ALWAYS.

Fast Forward: I had such an absolute blast seeing my soul-sista again. Her laughter, animated nature, nurturing spirit & super charismatic ways are so renewing to experience again IRL. I cannot remember the last time I laughed so much. It was so energizing & healing. CJ-- thanks for the great hospitality & magnificent fun. A trip I won't forget! You are one of my Earth Angels.

puppy love with Chlo ChloWine anyone? The best therapy... puppies!

Yes, this is her home... I'm so jealous! A little patch of green heaven right in the metro area.

TREES!!! Ahhhhh....

Check out their view. Do I have to come home?

Time to recognize & celebrate our behind the scenes HERO

Here is the man who swept me off my feet nearly a couple decades ago now. Has always been my partner, even when we do not agree. He is the quiet, yet hardest working leader of our pack. I get asked always, "how do you have the energy & do it all?"-- the biggest reason outside my beautiful babies is the gift God has bestowed in my love, best friend, & amazing father to our children-- my partner. I want to take the time to celebrate the man he is & has become. He gives unconditionally through the many thankless tasks he does, just because we need him to. Throughout the hustle & bustle of being the sole provider he quietly shoulders the tremendous responsibility of keeping our family going & all the items his hard work provides our family. And, somehow, even while ill himself E still remains interested & a participant in the detailed decisions of the children & all their daily lives involve, he plays with them like the best & craziest kid could, & always is there for me-- thru the good & bad.

As most married couples, we've had our share of the rollercoaster of this life. Becoming parents brought that rollercoaster ride infinitely more erradic, but we are blessed in our commitment. Many men would look at our family situation & would flee for their homeland-- the man God crafted in E. is so intricately extraordinary, I cannot even begin to do his character justice through my words. It's through the images & memories of these past years, especially the past 7 I am astounded at how resilient, ambitious & about the biggest heart I know. He has remained steadily by my side through the lowest of lows & championed for our family always. You are remarkable, E & are the world to our family.

Happy Birthday, my love!

Bella learning to swim

 Now that's a handful! Roo & Sbear

Loving baby Bella

He's a mini-E!

Big Man & Little man

Welcoming SJ

Fun with our littlest

With Bella at her Buddy Walk

Welcoming our sweet Bella

Cannot have the UPs without the DOWNs

We recently were notified that we were denied IL state funding for Roo & S-bear, are still holding our breath for Bella. All sources of respite is looking very grim for most agencies. Though SJ should be in Birth to 3 (so that eliminates her for funding), we pay her therapies privately, because our family fee is more than our copays. While I was hopeful that God would provide for us through this venue, it's not looking to be His plan.

Like so many aspects of life in this world, I wonder WHY it has to be so hard to do what is RIGHT? Taking easy routes & short-term fixes offer up rewards, yet when it comes to maintaing character & integrity-- the road is often long & difficult. My logic wants to rationalize this is God's way of seasoning our souls for the Promised Land of hereafter. So for now, we take it day by day & pray for just fulfilling the basics, knowing we will intersect those with purpose for helping us help our children, if only we remain patient & pure of heart. We have been blessed with the K family's involvement & friendship & are grateful for our commited therapist team-- in this geographic location even that cannnot be for granted. I have to admit, it's so humbling to put myself all out there for a group of strangers in suits & business offices, running politics & sharing all our family's most sensitive vulnerabilities in order that they may see how/why we could need help-- only to be told the children do not have a dev disability & their challenges are due to their environment. Like an invisible brick upside the head-- that hurts! Thankfully despite my exhaustion, I'm tenaciously determined, so I won't give up. In this vein, I know it's a long shot, but will post my play therapy volunteer ad here to make it prayerfully available in hopes we can continue SJ's SonRise therapy (at bottom).

This past week has been difficult with all the children in a state of distinct regression. Definitely kidney stress going on & betting on high yeast, too. S-bear & Roo have had erradic mood swings despite regular small snacks, fluids & all the normal precautionary things we do to stabilize blood sugars. Roo's kidney reflux has REALLY kicked up & is wetting constantly-- it has totally affected her self confidence & level of neediness. She's had a couple days filled with chronic anxiety attacks & severe volatile behavior; it breaks my heart to know she's suffering inside. SJ has been practically non-verbal the past weekend & not able to connect even basic eye contact with Momma despite hydratherapy, trampoline & lots of other HUGE motivators. Bella has reverting fully to pullups for a bit, b/c of the absolute lack of control & also has had huge sound sensitivities, sleep disruption & fatigue; all worries when correlated to her autoimmune disease. This is the cyclic regression of the ugly Autism beast.

Other than a mild tummy bug midweek starting with SJ-- there have been no major changes. Except swimming in my Mom's chlorinated pool for a couple days. That so could be it though. I've got to email Dr. on this. They have been outside a ton & I know corn allergens are off the charts from a dear friend who has a little one just as sensitive as my kiddos. We've been soaking up vitamin D like crazy trying to combat & balance immune function.

My Momma is coming to visit today with a very special little girl who has been a part of my heart for 9+ years now. I'm so looking forward to Mom's maternal love surrounding us & Princess B's pure heart & charismatic zest for life. I hope their visit boosts the kids engagement levels & is not too much for them. I know they will have bouts of fun even if they cannot regulate well-- we will just do what we do best & crisis manage in that case.
So glad they have this experience to be with extended family no matter what & I am grateful to have my Momma in my home. =>

1.2.

just a few oldies... gonna start posting these little by little

3.4.

1. Bella's first eskimo kiss

2. Cuddling cousins - Bella & Princess B

3. Roo & Sbear - 2 peas in a pod

4. SJ tulip hat

**all pre-regression into Autism**

______________________________________________________


Extraordinary family* in western Chicago suburb is seeking multiple motivated & compassionate volunteers to work with a 3 year old Autistic child for individual SonRise play therapy. TRAINING PROVIDED! References required.


We are willing to work with university to document hours toward school credit (internship or community hours) or simply help build your resume. Therapy time is provided in units of 1-2 hours. Hours require availability during afternoons of weekdays.

This is an excellent opportunity for a motivated individual pursuing advanced degree involving serving or working with individuals having special needs.

You can see info on SonRise here http://www.autismtreatmentcenter.org/ or look for videos on YouTube.

If you possess the following qualities/skills/etc, and you desire to work with an incredible family in a very pleasant & positive environment-- please contact me at detour.autism@live.com . Leave your name, phone, & best time/way to contact you.

Play therapy volunteers should possess:


- Solid personal integrity, good character & morals
- Reliable & good work ethic
- No criminal background
- Dependable transportation
- A general positive outlook
- Ability to relate to sweetest child with extraordinary gifts
- Good common sense & solid judgment
- Willingness and ability to accept & carryout training
- Passionate about children, their well-being & making a positive difference in their development
- Solid patience
- Willingness to learn & participate in evolving individual child's needs
- An interest in learning about Autism spectrum disorder
- Availability during daytime afternoon hours
- The commitment to become a part of our unique family dynamic for a minimum of 3-6 mos. or longer


COME WORK WITH US TO CHANGE OUR CHILD’S FUTURE FOREVER
& REAP THE REWARDS OF A LIFE CHANGING EXPERIENCE!

Our mini family vacation

The week before leaving for E's parents was exhausting & full. I began to get concerned when the kids all got really sick at the beginning of the week... that we may not make it. Low grade temps & severe body aches. SJ started on Sunday, then the rest followed. Bella actually went to bed at 6pm & wouldn't come out of her room until 11:30am the next day. I just kept going in & syringing her fluids, putting cold rag on her head & giving her love. The rest was good though, because she finally perked up though we missed the lionshare of therapy.


Fast forward to Wednesday... after 2 days of cooking for trip, nursing sick little patients & therapies intersperced... the house looked like a trainwreck. But, the good thing about disaster is that it will patiently await your arrival home days later. Seriously need a cleaning fairy!


Packing the Yukon, or black bus as Roo calls it, was amazing. Our 150 qt cooler just fit the back width. We had backpacks for each child, shoe bag for all, small suitcases for each of us. A small emergency vehicle stash of supplements, first aide, cold/allergy/flu remedies, sunscreen & natural bug repellent. 2 additional baskets for dry food, golf clubs, life vests, snack cooler, extra travel clothing & porta potty made our Clampetts transition complete. Toileting, loading into carseats & situating with juice & snack cups, blankets, asst toys & DVD loaded & we were on the road again.


The trip up was ok-- just short of 6 hours. The kids were actually quite good considering they were sick. I had to perform contortionist manuevers to get into the back for potty breaks, diffusing fights b/t Roo & Sbear & carrying out my flight attendant duties. I was so glad to get out of that truck!


Kiddos really had fun at Grammy & Papa's & for the first time since the twins were mobile, I actually had fun being there with them. Can I have an AMEN! They all have been progressing well (exceptionally so these past few months-- way above anything we've seen prior to detox) & seeing them outside our normally sheltered existance was truly telling of just how well they ARE RESPONDING to the medical, nutritional & therapuetic interventions that have become our normal routines. They all stayed together rather than bolting in opposite directions to the nearest dangerous opportunity, took interest in what other people were doing, looked to interact with other kids (YES!) & slept a great deal better than EVER before. This all was so awesome, especially when they were a little under the weather. For the first time while there, I didn't have the maxed-out hyper alert feeling of propetual adrenaline surge the entire trip. Even with the mountainous FOOD issue of trying to keep them clear of contaminants which are the normal for intake for others wasn't nearly as much of as a battle-- probably b/c our kids have matured some in that aspect & are better able to control their impulsivity currently. Again-- all such progress.

Big milestones were: all their social behavior had really improved, they would process & listening when acting impulsive to our verbal cues much more & their ability to reshift/control impulsive behaviors, less perservation on fears (like water, boat, owls, etc). I know I said SLEEP. Sbear was only up 2 of 4 nights instead of all & older girls never up. SJ just one night. Heck the kids even went for a ride in an open top jeep with us (at the rocket pace of 30 mph), but they tolerated the wind on their faces/skin & enjoyed themselves. Firecrackers did not send Roo into tizzy, nor the few dark clouds & rain, plus she actually swam ACTIVELY. Nothing short of incredible strides they are making individually. Praise God.

This trip I was able to converse with the family like I hadn't in a LONG time. AWESOME! It was great to all be together for even a short time. Regardless, the memories I'll take away are the giant strides the children are making through their hard work & the endless hours of support in the choices we make for them in our lifestyle. Despite our unusual lifestyle of very restrictive diet, a pluthora of supplements & homeopathic remedies, circus of sleeping arrangements & chaos we tend to add... I just feel blessed seeing our kids being the sweet & silly kids they are &  genuinely enjoying themselves. They all have to work so very hard to do the things that come natural to the majority of people & are absolutely 100% my little heros.

Here's a few pix...

Bella & her cousin & furry cousin as well. =>

Our dynamic duo suiting up for a jeep excursion.

Notice the animals Sbear will not leave behind.

OMG- It's a family picture. Check out Sbear's enthusiasm.

Family jeep excursion with little sardines in the back.

Some exhausted babes after a day at the lake.

Roo enjoying a special treat after a swim.

S-bear eating on the run.