Happy Thanksgiving!

In honor of three very precious people in our lives... in addition to the vast spectrum of blessings we have received in this year. Thank you, Lord! Love you Michelle, Mom & Shawn. Each day is a gift and each day we have you we are blessed. T. 
**click on link to LISTEN... Karen Drucker "I am so Blessed"

SJ (4)drew this morning

Family photo opp from Summer

We tried-- LOL! How many takes will it take? 

Shooting film of multiple kids with Autism is like herding cats. 

Progress - Looking back & then to today *A Place of Miracles*

Today I'm taking the time to pause & step outside of the *circle* of our family's life. I find myself drawn to take the vantage point of spectator, in order to remove myself from the emotions of this journey. This is quest of comprehension, rather than needing to shut off from reality. A conscious effort to take in, recall events, and celebrate today.

My children are changing; YES, as kids do, but moreover ours are evolving profoundly; I feel a need to pause and purposely observe. The constant daily circuit of care-giving & family routines often preoccupies my mind; I often am not focused on how magnificent this journey has been & IS. I don't want to succumb to the complacency of *taking for granted*-- where we are today and the miracles beneath this roof. 

From experience, we've lived this life understanding it is delicate, with full realization that nothing is certain or untouchable. Our world can and has been turned over in fractions of a second. Daily I'm in awe so often of my children and each millimeter of their movement, that when I step back to see the whole horizon, honestly it's none other than astounding. My mind finally sees the giant work God has carved out with details & purpose I never recognized in the moment. Maybe I saw a shadow of the beautiful mountain, yet He had created an entire breath-taking universe in comparison. Through everything... absolute exhaustion, unparalleled stress, calamitous illness/regression, & my absolute uncertainty of tomorrow-- He has had our plan & continues to carry us.

We've bottomed out more times than I can recall or even truly want to, yet somehow, with the help of someone(s) our family propels forward. The children are champions, even on their worst days-- my neuro-typical mortal frame pales in comparison to the will, light, & energy of their tenacious spirits. These unique people don't know how to be disappointed, lose, complain or give up-- they've never had the choice. The world as we know it does not vibrate harmoniously for their inner workings & yet the rest of the unscathed population can learn so much from even one day in their life with their challenges and triumphs. I fully believe, as parents of Autistic children, we are raising AN EPIDEMIC OF TEACHERS... beyond our complete comprehension.

Today I focused in terms of only one year ago & what this time has brought to each of my babies. I'm left with a sense of gratitude so enormous, I'm singing praises. Thank you, Lord!

A YEAR AGO...

- Bella had unexplained acute onset of bilateral hip dysplasia. She had no social interest beyond getting her most basic of needs met. She preferred to be completely exclusive, not even in the same room with any of us & chose to partake in repetitive isms like a broken record. OCD-like tendencies ruled her world. Today she is cast-free, brace-free & doing gymnastic feats with vigor. She is making eye contact, pointing to request, addressing whom she is speaking to, answering to her name, excited to see friends, engage-able, less obsessive & desires independence in being the big girl she is.

- Roo was cycling through immune crashes/viral wipe-outs/infection every 2 months, she wasn't growing or putting on weight. Her lungs were severely vulnerable, her eyes sunken with dark rings, & her body wasted compared with today. She battled rigid fears, specific phobias, and consistent separation anxiety. Now though still immune compromised, she has energy each day in bursts & large growth of physical coordination (still alternated with fatigue, but huge gains), she has outgrown her brother in height, her appetite is improving, she is aware of social nuances, working constantly to learn flexibility in this unpredictable world, she's growing significantly in confidence & even competitive, she's really starting to blossom with independence & expressing empathy actively.

- S-bear was speaking nearly entirely in scripts & playing exclusively to himself. He could not make direct eye contact with out covering his eyes afterwards, was up 2-3 times per night, & was oblivious to our social world. His auditory processing was firing on about 10-25% of our spoken language. His exclusive play was rigidly repetitive & his isms were compulsive & occupied his entire day. Today he is expressing his thoughts & feelings in real, as well as abstract details, he is seeking to engage others across environments, processing spoken language/following directions, & verbalizing thoughts nearly equal to his twin sister (just not quite so bossily). He seeks friends, talks of other people & allows us into his world of imaginary play. He is concerned about others, how they are feeling & protective of them. He prompts me with the coping scripts I once fed to him line by line.

- SJ was outwardly displaying seizures, stunted growth, repeated systemic infections, extreme withdrawal to the extent of long periods mutism daily, constant cyclic regression, and her speech was in one or two words for basic needs. She never called to me as Mommy, sought help, & her eye contact was only in accidental fleeting glances. She was content most often, but in a completely separate world from ours. She occupied herself in infinite repetition of isms. Today, she looks at us, protests & calls out to Mommy, dances & performs dipped in her own propetual sunshine vibrantly. She loves school, verbally comments on her surroundings & the people in them. She is excited by PEOPLE, acknowledges them (even those she doesn't see often) & is truly fond of her siblings. She has an opinion larger than her little body & is growing! Her speech has expanded & she has an amazing sense of humor. A true character, she is.

We have a long path ahead, yet in this moment I acknowledge God's grace & light upon these children, His hand in the angels He sends to us, & the perfection of His design in these unique little beings. The road has not been straight, nor do I expect it ever will, yet in 3 words for today: Progress, Love, Celebration. This home IS *A Place for Miracles*.

In celebration of the true essence or our: Bella, Roo, Sbear & SJ. 

"What lies behind us and what lies before us are tiny matters compared to what lies within us." Ralph Waldo Emerson

Thankful for the little things

Recent I'm grateful for...

Sharing a field trip experience with my twins... they are nearly 6 & it is only maybe my 3rd or 4th field trip I've been able to do with any of our 4. So amazing to see them outside their normal environment. My little girl had some difficulty, yet I'm so amazed by how incredible she is & how far she has come. My little guy, was *at one* with nature. The frog riding on his head was the animal we were exploring *how it would live in the habitat*. At one point he contributed to the discussion that "penguins would not live here"- lol. The wheels are always turning.

Little man taking it all in.

Our beauty Roo. Her intensely taking in our nature leader speaking. Innocent, brilliant, & such a dynamic heart. So proud of her.

Bella stopped me after our bedtime routine by calling out "Mommy, Mommy."  When I went back into her room & said, "yes"-- she replied, "Night night Mommy. See you in morning." Her speech has picked up greatly in last week again, following a couple months of a regression. PTL! Even so, that wonderfully amazing loooonng sentence is such an accomplishment for her to coordinate. I love love love seeing her sunshine burst through the exterior challenges.

SJ has become incredibly finicky with food (extremely sensory defensive to textures) & does not like but 3 kinds of fruit & usually no vegetables. She sat with me while I ate dinner & decided to put a piece of cooked broccoli in her mouth. She LIKES it! I swear I heard angels singing- ha ha. She doesn't looked enthusiastic here (tired), but she's eaten another 3 times since & still likes it. Yeah! 

Photos from Els for Autism Grande Finale & Cog Hill event

What an event. Amazing on so many levels. Feeling empowered & recharged.

T, Big E., Little E.

Beautiful Cascata course

 

Check out little man front & center-- Mr. Ben Els

M. & E. far left & below.

 Kinda remind me of Roo & S-bear.

Our finale party view from PH rooftop. S-bear would have loved the animal presence :^)

If only I could get this group's energy in the SonRise focus room.

Awesome couple, with true & genuine about making a difference NOW.

Above photos courtesy of Els for Autism & Sponsors
for more, see website @ http://e4agolfgrandfinale.com/news-and-media/2011-photo-gallery

Friends, Family, Comradeship-- A Common Cause

The Grande Finale

October 23, 2011


It's Sunday morning -- E & I are seated on a plane to Las Vegas, Nevada. This trip is for E & I to attend Ernie Els Grande Els for Autism event. at the end of September our team had $11,700 raised for the Center of Excellence benefiting families like ours, with children on the spectrum. Even though it's only been just over 2 months-- the event seems a long time ago. Time is never stagnant these days. I'm excited to be going with E. alone to share in this monumental event together. 
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It has been 5 years since we knew Autism was in our home, altering our lives & at the time stealing away the soul of our baby boy. Now when I think back to then, the wound is still there, though buried beneath volumes of time, prayer, tactics, emotion, etc. There is no other torture great than watching your child fade away into a distant self-exclusive world. Especially when he was such an affectionate, alert, fun & vibrant little guy up until then. I knew in my heart at that time, our beauty Bella had also been transforming, yet her descent into Autism's grip was not as defined as S-bear's. Physicians had convinced me it was another dimension to her intellectual challenges of Down syndrome, yet deep inside my Momma's intuition knew better... discovery was yet to be found.


In general at that time, I remember feeling so unbelievably busy with Bella, whom then was a 3 year old with a multitude of therapies, our twin 1 year olds, and our baby SJo whom was nested securely in my womb. It truly was a blur keeping up then & dealing with the onset of new and greater challenges. Though today is every bit of busy as then, it is only different busyness. I have to consciously reflect upon our family today to really comprehend it as a whole, with all the multifaceted intricacies involved. The medical needs and supports are still profound, yet the children are healing more often than not (sometimes in inches, sometimes in yards). Finding Dr. MKG was a divine intervention that has changed our course of supporting our unique little tribe; for which we will ALWAYS sing praises. We LOVE Dr. Gs (plural- as my son calls him).


In our journey I have been trained to appreciate where we are-- simply by knowing where we've come from (rather, where the children have traveled from on this journey). Even in each of their uniqueness with REAL challenges-- they are more magnificent more than I ever could have imagined in becoming a parent, furthermore parenting those with special needs. The daily minutia takes the lion-share of my attention, yet there is a ever evident trickling stream of God's light that shines through in moments among the everyday. The connections I have with these little feisty beauties-- is the true GIFT I will never tire of. I do get tired after the big waves & even in endurance of this marathon, yet my babies give me the adrenaline, the will, the drive to never stop.


Bella, Roo, S-Bear, & SJo are making PROGRESS and come out winners each day for just enduring and processing all the daily sights, sounds, feelings, et all-- which the neurotypical population takes for granted. Autism in some ways is a silent disease, because on the outside-- they appear fine when not completely in meltdown, but I know they endure so much and that is why they are the CHAMPIONS, not me or any of us around them. THEY ARE THE TEACHERS, if only we will listen.


Their progress is wonderful, a precious treasure, even great for some of them-- but, I savor the connected-ness I have with each. I will never ever take our connection for granted, because their were times for each of them, when they were aloof, completely isolated from this world, indifferent to my presence, or even preferred solace. Thank you God, for equipping me with the resources and tenacity to build bridges, even if these bridges are always changing. Thank you for sending us the people whom have helped build these bridges with enthusiasm, acceptance, joy & celebration. We are blessed. 


A connection may be a twinkling beaming smile from SJo, a moment of discovery and comprehension with Roo, a genuine pure affection from my boy wanting Koala cuddles, or just the awe I have in soaking up the innocence and light within Bella's beauty-- her star-laced eyes, soft freckles, amongst her vibrant diva-ness. GIFTS are abundant, where we care to see them.
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October 27th, 2011


The Grande Finale event far surpassed anything I had imagined. Speaking with the parents and loved ones to those on this journey was so commanding because they all radiated proactive in a positive light. It was refreshing to see all these families  together in one place *doing* & not just off to the side in Autism’s trample. Yes, this journey is challenging, yet being surrounded by people knowing WE CAN & DOING something about it was powerful. Meeting Ernie and Liezl Els was amazing; they both are so approachable, loving & open. I've never had the feeling of the simple common bond of another mother championing for her child, as I did while speaking with Liezl, in comparison with other high profile parents we've met. Ernie is as lovely as his persona shows on the big-screen; he is a gentle (and handsome) giant, with a fabulous sense of humor and genuineness. A lovely and inspiring couple, the Els. Of course the event itself was INCREDIBLE & first class-- way outside our normal reality, though we are grateful for the experiences & generosity and work the Els for Autism staff and leadership put towards it. All I can say is W.O.W.!!

It was so exciting to have this whole experience with my partner E. I'm proud of him in choosing this endeavor and leading us in our first ever Autism Awareness family event. With all his responsibilities he doesn't often have the time alone to lead, though he is a natural. We are so blessed to have such great family support (LOVE YOU ALL) along the way as well, standing alongside E. throughout this process, meant so much to both of us in our "coming out" into the Autism community. We know, believe, & continue to pray for guidance in our purpose and how we are to put to use the gifts we each have in leading and making a difference, not only for our own family-- but the astronomical numbers of families on a similar journey.

To all the Els for Autism families-- see you next year! We're ready to rock again in Illinois, Wisconsin & Minnesota. => And, Blessings to EVERYONE WHOM supported Team Schoonveld!!!

T.

THANK YOU!