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.

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?

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!

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!

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!