12.13.2010

The Rising Sun -- Hope Realized through SonRise (R)

With only a couple weeks before Christmas, I am newly home and renewed in ways I never imagined. E & I just returned from our Start-up Program at the Autism Treatment of America Center-- home to the SonRise (R) program. We spent a week there doing intensive training to focus our efforts on this therapy modality we had mentally & physically committed to prior to our departure. What we didn't know is that our year's motto, "2010 Born Again" would come to fruition, during our 7 days there.

This summer is the 3rd time the notion of SonRise (R) had entered our consciousness. I was ready & able to widen my vision to just let go & find out how to get started. At the center of this intention, was our youngest child, then 2.5 years old-- SJ. She has made great progress medically, yet she has been consistently inconsistent in skill acquisition & retention, despite a lot of focused therapy work. Feeling a sense of floundering, I tried to get her into ABA therapy-- "the evidenced based" therapy intervention for autistic individuals. We were placed on a 3-6 month wait-list. In the meantime, a close friend & SJ's developmental therapist agreed to work through ABA with us. We spent several weeks & both were left feeling this method will not engage SJ. She withdrew further into her world. It was then our therapist brought up the thought of SonRise(R). I researched, read, watched video clips & began seeking out others using this program.

We began informally to implement the principles & saw moments of miraculous connection. I was sold. Our therapist found a volunteer & even did a training for us. We started out 6 hours a week, one on one with SJ-- it was AWESOME! She responded more than I knew possible in that very short time & truly is a different kid in her focus room, in which the program is centered around.

SJ started preschool in September & by October I felt we'd really balanced out again to restart. In talking with a couple parents using the program, I began to know I needed to go & experience the formal training. I thought we could do this on our own, but something in my heart knew through our attendance at the training, we'd be realigned in a way beyond our comprehension.

We scrambled to make arrangements & asked for help from our parents to help us with the children, ages 7/5/5/3 (all with Autism), so that we could attend the training together. We had about 3 weeks to scrape together finances, plan & sort out the details to make this happen. It was a lot of stress just getting there with planning, wild winter weather & a feeling of burden that we towed with us to the hilly terrain of Sheffield, Massachusetts.We had no idea what we would leave there with.

Through our experience there, we came to recognize we'd been so focused on recovery for our kids and the tireless efforts that it takes in caring for them, we hadn't paid attention to the coating of emotion & judgment which had encapsulated our hearts. As a couple & partners, we faced for the first time all the raw & unexamined parts of our internal beliefs that have been driving us on our journey in a new non-judgmental light. It has been a freeing process & we were able to soak up so much more in our training on how to reach each of our children right where they are, simply by celebrating & embracing them whole-- autism & all.

2010 Born Again!

Now we are gearing up individual programs for each of them simply based on the goal of connecting with them, being with them & knowing the bridge between our worlds will be reinforced by a love that is pure, without conditions. Never have I been so excited in looking ahead to all the hours, effort & energy I know we will put into helping ourselves help our babies. What a beautiful gift we will give ourselves to truly experience Bella, Roo, S-bear & SJ for every ounce of whom they are right now & each moment forward. 

For the first time EVER in 7 years, I know with absolute certainty not only is God present, but He will provide EVERYONE & EVERYTHING we need to live 100% fulfilled lives with our kids-- by only our belief, faith & trust in them leading the way. I'll no longer leave my emotions in Autism's charge; this realization & new belief is more fueling than anything. Now with the old mindset cast off, we know we WILL: find 20+ volunteers to give their time in helping us reach our children, fund-raise for our own family & others as well so they can do the same for themselves through SonRise (R), experience absolute joy & selflessness by embracing the kids individually, & truly learn so much about the capabilities we each have individually & as a family.

It is a very Merry Christmas & even a better New Year! 
Love & light. - Momma T.

11.12.2010

Great Expectations

Here we are in November already. Time is a constant whir. Sometimes when there is a pause I have to remember to celebrate the mountains we've conquered. We always are celebrating the steps along the way of the constant achievements of all the children, because though many are quite simple-- all are magnificent no matter how minute they may be. Similar to single brush-strokes in an artists painting, these victories are unique & majestic when you step back to let it all soak in.

The past month and a half has been more tumultuous than the norm. With gains realized through the children's chelation, comes even greater challenges of their fragile over-tasked immune systems. With healing, comes sickness; irony at it's best. Bella's been so susceptible to viruses & we are in full support mode health-wise for a few months now. Her Hashimoto's has progressed into her eye system, just as her father's. There have been some scary moments, yet amazingly- she is communicating more intentionally & independently after recovering from the last big spell which took us to the ER. She spoke of her teacher, her aide & school Speech Pathologist (by name) at home, the first time ever this past week. I love seeing her spirit shine through the fingers of Autism. It makes me want to fight harder to peel away the grip. More than anything, so she knows, I know *she's inside* there all along & we'll never give up on helping her find her way. Don't get me wrong, the Autism is a part of her now & I accept that; what I cannot accept is doing nothing when we are finding interventions lessening it's affect. I guess I'm not much for standby mode. Bella (L) & Beautiful friend (R)
Roo was knocked down again by another lung virus & a strep flare is suspect. I found myself counting her respirations while snuggled into my lap. She has a fiercely intense personality, yet her petite little frame is so fragile at this point. It's only been a month since our last ER visit & she crashed again this weekend. Her Irish complexion is mottled with the extra load on her lungs. Her beautiful baby blues are framed in the all too familiar dark circles giving indication of inflammation and decreased O2 sats. She began a fever on Sunday, but burnt it out within a day. Eucalyptus oil in a humidifier, astragulus, oscillium, probiotics, vit C/D/B12 & epsom salt baths. Her cough was croupy Fri night & Saturday. Today it's still the asthma bark. Thankfully, we saw Dr. G. today & will detox this weekend.
S-bear continues to break through, although his emotional balance and compulsive behavior is out of whack right now. It's almost like the sprint of developments which are occurring are overloading his heart-- he gets mad & sad easily. He vocalizes it poignantly-- but I'm glad, because it was only a handful of months ago that he was not able. He told me, "Mommy, I scared." the first time ever yesterday. I asked him "why?" & he said, "the sounds are too loud" (meaning the television). It's sad that the common noises are overpowering to him, but AWESOME that he is able to tell me what he is feeling & then be comforted.
SJ is keeping up with the other girls in keeping me on my toes. Last week's hospitalization following a series of seizures put me in check to not take anything for granted. When I'm put into those moments knowing how fragile this life is with one of these precious babies, I realize even more how far we've all come. We're nearing Bella & the twins' birthdays which bring back a flurry of concerning days in NICU. Hard to believe our Bella had a completely reconstructed heart now almost 7 years ago.
I'd like to say that I don't take anything for granted, yet I know I settle in to the all moving forward pattern all to easily & it's nearly scary to look back for each child & know that *back there* is always a possibility again. Regression-- the abominable & the hard to swallow factor that describes my kids' Autism. We've seen several chapters of regression amongst the four of them, some more profound than others. Thankfully we're balanced with progression now too, yet it's not a seamless transition, but more a dance full of unexpected (good & bad alike).

Strep, yeast, mercury/metals & systemic infections all making their bodies work so very hard. Today brought us physical evidence of damage done by their MMR vax. It has taken them 11 months of chelation to get down through the layers of the toxic spill that sent our twins into their first regression and onset of Autism. Their last vaccinations totalled 7 each simultaneously; Sbear evaporated within 2 weeks & Roo's was a steady decline. They are the warriors, not me. I fumble forward & follow their lead, praying for Him to show us how.

Being on this tumultous journey certainly gives the mind eternal food to analyze, assess & reflect; my mind has become skilled at triage of the profound needs tucked underneath our roof. It's when I pause or take the time to "let God" that I see my expectations. I see that all my doings are done for good, but most often not without expectations. Just over a year ago I met a kindred soul who taught me that when I put my expectations on others & myself-- all will fall short. When I put my expectations to God, I am no longer dismayed by any deficit. This is a really challenging mindset to keep, yet when I'm tuned into the bigger deal-- the great expectations I had previously become exponentially larger gifts in multifaceted dimensions beyond comprehension.

In closing will leave you with this post of an astounding woman realizing the challenge I speak to above. I love you, Meredith-- you are beyond amazing! http://cornishadoptionjourney.blogspot.com/2010/11/i-have-so-many-thoughts-id-like-to.html

10.10.2010

Gold Rush Girls Party - Cornish family Adoption Fundraiser

Dear Neighbors, Friends & Family:

I am a Mom to 4 young children, all with special needs. I am planning this home gold party to donate anything I will earn as a hostess toward the remarkable Cornish family's adoption process. http://cornishadoptionjourney.blogspot.com/
 
I know we all have a lot going on, yet this would require very little effort from us individually, just selling your old/unused gold & being paid for it! I do not expect anyone to donate their earnings (who cannot use extra cash?!)-- I just want to donate mine as a hostess, to use this as a fundraising platform for a beautiful family in Florida.  A portion of all sales will go directly to their adoption mission, plus anything I earn as a hostess. My dear friend Nancy (our party facilitator) also has a child with DS & we both know the Cornish family well. By hosting this party as a fundraiser, I can donate my hostess proceeds towards the $17,000/child needed for this special family to bring home a very special little boy & girl with special needs, in orphanages in overseas. 

You can read more about why helping these children find adoptive families is so vital in these overseas orphanages at http://www.reecesrainbow.com/newsite/atriskwaiting.html . Children after ages of 2 are routinely placed in mental institutions with little to no health care. They face a staggering mortality rates. I do not have the source, but from administration of Reece’s Rainbow – “Within one year of institutionalization most children pass away. If they survive the first year, then the lifespan is about 10 years.”


I came to know this incredible Momma when her little Brianna (DS) was born (same age as my twins). We belong to the same Down syndrome support group. When they originally traveled to bring Aleksa home almost 3 yrs ago, I had thoughts off adopting a baby with DS from Europe, too. But, God had other plans for us & sent us SJo, then our children each began regression into Autism. This is part of why the Cornish family is so deeply embedded into my heart. This family's strength gives me strength; their faith gives me faith.
God is working miracles through this family, much more than I can outline in this small space. Please visit their blog to see their journey firsthand. http://cornishadoptionjourney.blogspot.com/

HOW YOU CAN HELP…
All you have to do is show up with any gold you are willing to sell & be paid for OR send it to me (labeled with your name & number). There are no products to buy or any outlay of cash of any kind. Instead, you get paid cash for the gold you sell. Or, you don't even have to show up, just drop off what you may want to sell & the facilitator will call you that evening to make you an offer. At minimum, it would be friends getting together for an 1-2 hours with good company & food! The more people that come or participate, the more we can raise to support the Cornish adoptions! Invite friends, family members, neighbors!

WHAT:       Gold Rush Girls Party - Cornish family Adoption Fundraiser

WHEN:      Thursday, October 21st 2010 @ 7:30PM (DATE CHANGED)

WHERE:     Detour Autism's home (will send address with your RSVP)

RSVP:        to Momma T. by 10/19 @ detour.autism@live.com

What to bring: * All unwanted gold & platinum jewelry *Broken chains *Old wedding rings *Single earrings * Pieces with missing stones (we will do our best to remove stones if needed) * Bracelets * Dental gold *If you have a question, just bring it!


The Cornish family’s Angels in WAITING!
They have approximately 3 weeks to make their goals for funding.




Top left/right & bottom right : Their angel, Aleksa, when they first met in 2008… they fell in love & had to say goodbye when the orphanage director changed his mind on letting her be adopted. Now she is available for adoption at 8 & will be placed in a mental institution if not. Mike & Meredith have never let go of the love they have for this amazing little girl, who started their adoption journey.
Caution: TISSUE ALERT for this video!

Bottom left: Their angel, Monroe, whom they will be traveling for soon & hope to bring both he & sister Aleksa home together. Such a handsome little man.
http://www.reecesrainbow.org/sponsorcornish.html

If for any reason you do not want to participate in the Gold Party, yet you still want to help this family... go to http://www.reecesrainbow.org/sponsorcornish.html and donate directly. Prayers are graciously accepted, too!!!



Help us make a difference in the lives of these beautiful children 
& others like them.
  In His faith,
                                                            Momma T.



8.13.2010

An Angel Encounter

You ever have those days when you feel so not on top of your game? That was me this morning. After about day 4 of severe sleep interruption & the kiddos being much more than usual erradic with all things, packing up the house for Grammy & Papa's lake, a 6 hour drive with 4 little kids, and 2 more interrupted nights... short tempers all around--- I was done.

E had found a frog at the lake & decided the kids needed a new pet. He declared we needed to load up the tribe & make a run for a terrarium for our new amphibian, "Buddy". The kids had a LOOOOONNNGGG night & I was so spent. Bella was wildly in opposition of any request, Sbear only wanted to swim & was fiercely protesting, lastly SJ was ticked off when taking her to the car after the long ride a day before. 5 minutes of multiple ear-pearcing screams, while performing car-seat Twister in the 110% humidity at 95 degrees & I snapped. "Quiet!" I shouted. I startled SJ & she cried harder. Instant Mommy guilt rushed over me. I was just so tired & totally out of fuel. "I'm sorry, baby-- it's ok." then I melted into my front passenger seat.

After a quick discussion of *letting go* with E. & 5 minutes of Sesame Street DVD-- the gang was quiet. "Look, they're calm now." - E remarked. "Yeah, great-- now they are sucked into sensory overstimulation of a DVD", I retorted. A deep sigh, 20 minutes of silence, a prayer & asking for forgiveness to the Father & I finally relaxed in exhaustion. All the kids were exhausted, SJ was yawning & it was only 10AM.

We arrived at the market & unloaded the kids. E had the twins (Sbear & Roo) in a cart & I had Bella & SJ. We pushed them all inside. As I pushed past the entrance heading for my short list of supplies, a fella smiled widely at us & waved hello to the girls as they chattered in the cart. I smiled back & focused back to my list. E took the twins a different direction as we got to getting the necessities.

After about 15 minutes, I pushed Bella & baby towards the front of the store & walked slowly, looking for the other half of our tribe. I looked quickly through an endcap of sunglasses & a gentle voice came up from behind us. I turned to find the gentleman whom had smiled at us so distinctly when we entered. He said, "I walked the whole store looking for you, because I wanted you to have this," as he handed me a sheet of paper. "I had this in my car and wanted to be sure you knew," he added.

Having caught me a bit off guard, I glanced down at the paper he handed me, entitled "Heaven's Special Child". He was talking to the girls a little & glanced back to me. "You are blessed. You have been chosen." he voiced. "I know, I help out at the Special Olympics. My step-daughter was challenged & she passed away... God, bless her." As he smiled again that wide smile, he said, "Keep that. YOU are truly special & a gift to these children." I shook his hand, said thank you & with that he turned & left. Not an ordinary store trip by any means...

I've had people tell me in the past that it was God's will to give us our children with their challenges, because *we could handle it*. I never really internalized it as I did in this encounter, even though I always believed from Bella's birth, this was God's plan. The man's words "YOU were chosen. You are special..." echoed through my mind. I waited for E & the other kids & thought to myself, "God, you just sent me an angel. Thank you for your forgiveness & encouragement."

The poem reads:

HEAVEN'S SPECIAL CHILD

A meeting was held quite far from Earth: "It's time again for another birth," said the angels to the Lord above, "This special child will need much love."

Her progress may seem very slow, accomplishments she may not show, and she'll require extra care from the folks she meets way down there.

She may not run, or laugh, or play, her thoughts may seem quite far away. In many ways she won't adapt and she'll be known as handicapped.

So let's be careful where she's sent, we want her life to be content. Please, Lord, find the parents who will do a special job for you.

They will not realize right away, the leading role they're asked to play. But with this child sent from above comes stronger faith and richer love.

And soon they'll know the priviledge given in caring for this gift from Heaven. Their precious charge, so meek and mild, is Heaven's very special child.

Another first in socialization

The past weekend we were able to go to our first EVER meetup with other families affected by Autism. I cannot believe we've been on this journey now for 3+ years and this is a big first. Acknowledging this fact makes me fully wrap my mind around the isolation we live within. We were blessed to have the kids psuedo-adopted older sisters (their favorite playmates), team K, come along. We would never been able to do this without the one to one kid ratio. In all honesty, I was still a bit nervous. There were some 80+ people planned to be there (a lot of activity), all of them strangers to the kids, & a completely unknown environment. From the children's standpoint-- this is asking A LOT of them.


Thought this was very interesting when trying to understand *how it feels* inside an Autistic body... check out the following links:
http://www.youtube.com/watch?v=Stq_fqKqF74&feature=player_embedded#!

Anyhow, the meetup BBQ was Amazing. It felt like simply like meeting the oldest & best of friends. Everyone GOT IT & was so understanding, genuine, warm & just plain good company. It was special to meet these amazing parents I've come to know from the online support network - Autism Is Medical. Though I hate that all of us have loved ones fighting the fight of Autism, it was also inspiring & encouraging knowing so many are championing for their kids at all costs & making gains for their kids.

The kids were, well-- KIDS! So interesting, beautiful, vibrant & unique. Seeing so many young ones together affected by Autism made me kind of stop to take in the sheer numbers they represent, as well as a generation that should be teaching our future generations. I hope we are all wise and patient enough to listen to their teachings.

Another first, another blessing.

7.27.2010

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?

7.19.2010

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!

7.06.2010

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.

6.22.2010

Therapy day & miracles

It's Tuesday & unlike the months outside of Summer, during these few non-school months the lions-share of the kiddos professional treated therapies are scheduled for Tuesday. SJ has Occupational Therapy & Speech (2 hours) & Bella, Roo & S-bear have Speech, Occupational & Social Play Therapy (3 hrs./child). This day is jam packed, but it's easier to have one NUTZ day then to be constantly pegged with therapy scheduled throughout the week. It also gives us flexibilty in the remainder of our home therapy & activities.


There were some awesome happenings from the kids today. When S-bear got mad that he had to WORK in Speech, he said, "My fruit snacks!" Our therapist held her ground to make him complete the task, to which he answered, "Rrrrrrrrrrrrrrraaaarrrrrrrrrrrrrrrrr, VOLCANO!" He actually made an analogy of his feelings of frustration to an abstract process of a volcano errupting. That is so HUGE in milestones for kids on the spectrum of Autism, as typically abstract principles are difficult for them to comprehend & generalize.  Later, while finishing up the day at Play therapy for the 3, SJ & I played in the wait area & I did all the medical history paperword (well, started it-- I won't go there now). It was 2 hours of therapy, so a LOOOOONNNNGGGG time in a 2 year old's world. The therapists all came out with kids to wrap-up the sessions. After 5 minutes, SJ ran over to the chair with my keys, phone & wallet-- grabbed them up in her pudgy little babyish hands & said "I say bye-bye". It was awesome seeing her put together a sequence & vocalize her thoughts & opinion, cuing us into her boredom. I've learned to never take such a small thing for granted. Anyhow, for our 2nd round of dual therapies & new therapist the kids did great.

On our way home, the sun was shining after a long couple days of rain & it's rays were filtering through a thick a grove of hardwood trees on the horizon, as I was mentally recapping the day. It was a beautiful scene. Though exhausted from all the activity & coordination of mulitiple therapies for: a 2 yr old, two 4 yr olds & a 6 yr old, I had a wave of peace come over me. This does not happen a lot & seemed profound in contrast to the business of the day. I kept thinking of how thankful I am, that so many things have come together for us despite the myriad of complications Autism brings to 1) life in general 2) family life 3) each child & 4) the providers/caregivers of these unique individuals. This peace was a welcomed hug from above; God is Good.

Just a few months ago, I'd written in ink my prayers, asking the Lord for His community to provide for our children & then shared it with the world. Talk about putting it all out there-- there's another leap of faith, but God put it on my heart to share in this journey-- everything so that others may find healing, knowledge, community & maybe even inspiration through these beautiful children He's leant me. He has provided & the miracles keep trickling in. I couldn't help but be taken back by all that had transpired over the past couple months, starting with 1) huge healing for each of the children & restoration of old skills & gain of some new-- AGAIN that's never taken for granted in this arena. Dr. G. has been one of our Earth angels & our faith in his approaches have brought undisputable progress. 2) We were re-established with old friends in a beautiful family who is helping us care for the kids through  2 young ladies who are sisters. E & S-- we all LOVE YOU! You make a difference in our kids lives through your fun spirit & unconditional love. 3) A wonderful therapist who's known us for 3 years offered to start an ABA program for us, brought us volunteers for the summer & a wonderful spirit of giving to help SJ. 4) New Equine therapy & New OT/Social therapy, plus the comfort of an OT & ST that have stood by us now for 4 years. All these miracles by God's hand. I'm awestruck & humbled once again.

As I couldn't sleep last night I couldn't stop thinking about these things & despite my daily feelings of happy chaos-- how glorious God's light is on our family. Then it hit me. I need to expect His miracles & open my heart to seeing them, even if only in small fractions. Everyday we are surrounded by our Maker's orchestration of miracles, separated by people in only degrees. My faith must be tested for me internalize His promises. In faith I need to expect trials, but also blessings. And, always know that both will come in forms foreign to me and on a different time schedule, but He will not leave me. These miracles transpire from our human viewpoint in quantities that are ranging from big to small-- that is only our human perception, because to Him all miracles are equal & gifts He gives to his children, against our human assumption-- unconditionally. Watching each of my children from birth until this point at the lowest of times & incredibly high points make me understand His love & desire for our love & knowledge/trust in Him.

No matter what your faith, family, spiritual background or beliefs you must own your heart & mind's power to realize good in this world. Expect to ask for help occassionally in doing this, or you will grow frustrated from lack of control over things not meant to be controlled by YOU. If you project good, good will find you; if you perseverate on the negative, you'll stick to negative. Expect challenges, then expect triumph...

I'm going to find some miracles today, will you?

6.13.2010

Everyone has the rainy day blahs

Just took the kids on an outting & it was interesting. All kiddos were so crabby... boy do we need the sun to come out. Sheesh!

Pics show lack of humor & cabin fever.

She looks innocent, but just try to take her Elmo-- she'll shred an eardrum in a nanosecond.


Bella cannot believe how crabby everyone is either.
Check out her foot-gear.


Sbear: I want TOIYZ Mom
Me: You have enough toys.

Sbear: NO Mom!


Sbear: Absolutely not!

6.10.2010

One cheesey hambone

Look who's got her sunshine back-- SJ!

Unconditional love

While searching for an special lady's birthday card yesterday I read a lot of them. Though I found a spunky/fun one to match the gal I was looking for, another one I read I bought for a different reason. It read as follows....

"She's the one you've known forever. The one you go to for honest advice and genuine support. The one who accepts your quirky little habits and understands you in a way few others can. She's the one you can call at any hour-- to laugh or cry or complain... The one whose voice has been there all along sharing secrets and dreams and singing your song when you needed to hear it most. She's the one who can read your mind, hear your heart, and love you just the way you are. She's your lifelong friend... but so much more. She's your sister." ♥

As soon as I read it, I thought of my twins (and another special friend's twin girls). Despite my twin's extra challenges & S-bear's difficulty with verbal communication-- he's never had trouble being understood by his twin sister, Roo. Even as we saw them in utero, they seemed to know each other was there & snuggled in the same positioning.... if one was vertical, so was the other. When they were newborns, S-bear would begin crying if Roo stopped-- like they were a tag team. But, if they were next to each other while touching me-- it was bliss, like the quiet comfort they knew in the sheltered womb. As we separated them later on before their first birthdays, when one would wake the other would. Often one baby would be upset if the other was sick, even though he/she was not. They had an unspoken language that so many refer to as twin talk. I have a couple different friends with multiples & similar stories. With my own twins & the friend I'm thinking of our twins both have an Autism spectrum disorder, so their atypical language development made this unique feature of *twin talk* that much more evident.

If you have a sister or brother, like the one described in the excerpt above, I hope you appreciate them. God has given you a gift of Himself in another, an extension of His peace. This magic will live in many hearts you meet along your journey, but in the hearts living within your HOME it is magnificent in all that you share in those foundational years. As I think back, I found this UNDERSTANDING in my Mom & still long to be near her even though I am grown. Yes, Mom's know about unconditional love, but not all Mom's relate  to their children as an extension of their own being. I believe my Mom modeled for me the critical skills I'd need to be as a parent to these 4 unique beauties God has on loan to me. Amazing!

6.08.2010

Summer has begun -- few updates

Bella has been finished with school since last week & the twins are finishing up today. I cannot believe how fast time flies. Bella is already missing school & asking for her bus & school. Despite a fractured foot, multiple x-rays, doctor appts & 3 orthodic device fittings, she's been a trooper. Brace # 3 is a knee high boot which she was fitted with yesterday. She wouldn't even stand up after it went on & just cried as I had to carry her to the car. I said a prayer in the car that this would be the last ortho visit & we would be on our way to healing for her foot. We made a pit stop to the health food store on the way home. She pointed to the store & said, "go?". I unloaded her & she whimpered as she drug her foot the first couple steps. Once inside she gave that boot a test run-- literally! Good thing she's Irish-- she's too stubborn to let anything slow her down. By the time we were home, she had figured out every move in her new boot.

Our past DT/MT met with us last week & has volunteered to get a program started for our youngest child incorporating ABA, floortime & sonrise models. This is an answered prayer, because we simply have been unsuccessful in finding someone to craft a program unique to our family's lifestyle, needs & SJ's needs. We've been on 3 waitlists for ABA, but there is such a high demand for therapists & these services we've been waiting since her 2nd birthday. Now we're prayerful that insurance will honor their obligations to cover this critical therapy, so we can continue building up SJ's skills to prepare her for school this fall. On a sidenote, I cannot believe my BABY of my babies will get on a bus this fall. She is just so tiny-- at 2 years 9 mos she is just 27lbs & 31" tall (that's below 3% height & 15% weight). She is smaller than Bella at that age & Bella has Down Syndrome.

We go in for our detox screening tomorrow... all 5 of us. I figure if the kids must endure this, I will with them. I want to try to understand what their bodies feel when they are going through this process. It has been hard on my body, so I know it taxes them - yet the results have been nothing short of amazing over 5 months. All of them have progressed so much-- Sbear is at a level we've never seen before & it melts my heart. Bella is right in line with Sbear. SJ is making eye contact again & said Mommy again today. Roo is nearly recovered to where she was before regressing last summer, only with renal complications; I don't know that she would be detected as Autistic by the average person. God is GOOD! I have to keep reminding myself of that, not because I'm unappreciative, I'm just worn out! Here's to a better detox round than the last one & lots of patience for our 4 hour appt. tomorrow-- have MERCY!

5.28.2010

SJ is coming back around

SJ has been being treated for both bacterial & parasitic infections of intestines. Yes, lovely I know. But, truly most people have parasites b/c of our food processes, family pets & just nature. At least this one isn't the spreadable kind of creepy kritter. Anyhow, keys to avoiding parasites, in case you're interested is: healthy gut flora (good probiotic), keep sugars to minimum (sugar is an immune system suppressant & the more artificial it is or modified (HFCS) the less your body is able to process), assure healthy bowel patterns (if you tend to be constipated, that's the perfect environment for yeast & parasites-- our whole family takes digestive enzymes thanks to our low pancreas function & metals toxicity)

Anyhow, she's just finished her *Shazam!* treatment-- doc pulled out big guns on this one. WOW, she is talking a ton & really really active again. Her speech pathologist looked at me yesterday & said-- "yup, she's back in the game." She was chasing me with a snake this morning making the hissing sound.

It's amazing how sensitive these kiddos are. SJ had a fairly large regression from about March until end of April. She's been recovering in degrees over the month of May, with a doozey of a flu bug in there, too. She had me pretty scared, b/c she was so sickly she'd just lay around & was so unresponsive, especially in eye contact, but lack of cuddling, too. I was starting to get worried because there is a huge predisposition to developing Leukemia in kids with ASD; which I learned from a researcher who also has a child with DS & ASD. With so many systems & issues hindering their immune systems & subsequent improper immune responses, the body begins an ugly cyle of attack on itself. Anyhow, I'll save the autoimmune schpeel for another post; I need more coffee & time for that.

So glad to see my girl coming back again. Speaking of the little darlin'... check out our little beauty's unique eyes... two colors. Like Daddy's brown eyes started & Momma's genes said, "heck no!" =>




I LOVE YOU BABY GIRL!