Flashback to Pentecost school vacation 🏊‍♀️💦🚶‍♀️

Sooo proud of this girl 🤩! She defied her fear of swimming by herself in the second lane (meaning further away from somewhere to hold onto just in case) and swam and swam. It was a huge mental effort and a huge achievement for Ciara 💪.

For those who didn’t know: a body that is scared will stiffen. And a stiff body will drown. Kris and Ciara talked lots about the picture below during those two weeks.

The Trexo Robotic sessions helped Ciara’s body get back into alignment🚶‍♀️. The crouching was gone, as was the backward arching while standing. Growth spurts definitely suck as they totally mess up the body.

There are no limits, keep reaching for the stars 🌟

PS: The head towel is the new Lanza street style #cpa#cerebralpalsyy#cpwarrior
#inklusionr#inclusionp#inclusionmattersn#SDRc#sdrchangeslivesn#nevergiveup #sdrchangeslives #nevergiveup ... See MoreSee Less

We are heartbroken to learn that Ciara‘s surgeon Dr. TS Park from St. Louis Children’s Hospital suddenly passed away - 2 months after having retired. Ciara was his patient #4448.

Dr. Park was a greatly gifted surgeon and a wonderful person. He deeply cared for his patients and their well-being. I’ve never met a doctor like him (and we’ve been to quite a few). Even years after Ciara‘s surgery he happily answered our questions. He really wanted to see „his“ kids thrive and live their lives in the absolute best way possible.

We‘ll be forever thankful to him ❤️. May he rest in peace. Our thoughts and prayers are with his fami#sdrchangeslives
#stlch:#SDRr#cpngeslives.com/

#sdrchangeslives #stlch #sdr #cp ... See MoreSee Less

❤️VON GANZEM HERZEN DANKE❤️

Nach einem Schuljahr voller Chaos und kurzfristigen Lösungen was die
Schulbegleitung betrifft, kehrt ab September wieder Ruhe ein. Ciara hat eine
neue, zweite Schulbegleitung gefunden 🥳.

Von ganzem Herzen Dankeschön, dass
ihr den Beitrag so fleißig und immer wieder geteilt habt. Denn nur dadurch hat uns Petra überhaupt gefunden 🙃.

Unendlich dankbar sind wir auch meiner Mama, die Ciara fast das komplette Schuljahr hinweg zuverlässig zwei Tage pro Woche in die Schule begleitet hat. Ohne sie hätte Ciara die Unterrichtsstunden nicht besuchen können ❤️.

Inklusion ist in Deutschland leider mit unendlich vielen Hürden verbunden. Das komplexe, bürokratische und unflexible System mit Entscheidungsträgern (in unserem Fall die Eingliederungshilfe) und einer Vielzahl an Trägern (die die Schulbegleitungen anstellen) gepaart mit Fachkräftemangel sind ein Kampf für uns als Familie. Situationen wie diese halten Familien davon ab, dass mehr Kinder inklusiv beschult werden, auch wenn das Kind inklusiv beschult werden könnte.
Die Gesellschaft braucht Vielfalt - und zwar gut ausgebildet 📖. Ich wünsche mir sehr, dass unsere Politik bald über den#cpl#cerebralpalsy #cpwarrioru#inklusionh#inclusione#inclusionmatterst#teilhabed#UNKonventionp#UNe#SDRa#sdrchangeslivesr#nevergiveup#inclusion #inclusionmatters #teilhabe #UNKonvention #UN #sdr #sdrchangeslives #nevergiveup ... See MoreSee Less

Flashback to Easter school vacation part 2 🐣

The second week of the Easter school vacation was all about singing and acting - things Ciara really LOVES. Anpfiff ins Leben Inklusiv Aktiv
arranged a musical week in cooperation with the music school Musikschule Schönal;nau.

Ciara had a fun week with 24 other (disabled and non-disabled) kids and performed brilliantly as Mary Poppins on the last day.

Thanks to the wonderful team as well as to the Dietmar-Hopp-Foundation for financing such activities to pave the way for an inclusive society. Being able to grow up together, go to school together, spend school vacations at the same activities/camps will make our society a more tolerant one - one, in which everybody is a part of and really belongs to. It is so much needed! ... See MoreSee Less

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Flashback to Easter school vacation part 1 🐣🐰
… in our house school vacation often equals intensive therapy, as school leaves neither space nor energy for intensive workouts during the week.

We’re so happy that CiaraCharli;s theCK Intensives from CK Intensives came to Germany once again (saving us for lots of travel, organizational stuff and money).

Ciara worked hard to tackle the weakness and tightness caused by all the growth spurts she is going through. Almost to the date, Charli has been a part of Ciara’s journey for 5 years – and we’re so grateful for her and her approach. It’s a very thin line between pushing a child to reach a certain goal and demotivating by asking too much. She is a wonderful coach and therapist.

Thank you, Charli 💕 – see you in August! Until then#cp&#cerebralpalsyh#cpwarrior #SDR #sdrchangeslivesz#ckintensivese#strengthandconditionings#nevergiveupeslives #ckintensives #strengthandconditioning #nevergiveup ... See MoreSee Less

Can anybody guess what Ciara’s wish for her birthday was…?

…. The right answer is: horse-back riding at her favorite stable (where she usually goes once a week). It’s her happy place ❤.

Funnily Emilia asked for the very same thing, just at the stable where she goes to. Luckily, I could talk them into going out for dinner with us and Granddad anyway (meanwhile Grandma was hitting#cpe#cerebralpalsyt#sdrchangeslivesb#SDRa#ridingforthedisabled##rda##thepowerofhorsesl#horsepowerePowerOfHorses #HorsePower ... See MoreSee Less