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. =>

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

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


1 comment:

  1. Thinking of you my friend. You're in my prayers. I look forward to relaxing with you this weekend. Big hugs-