Tuesday, March 25, 2014

When Michele met Haley

Wow.....almost two years since my last update. Life moves at a breakneck speed, you turn around and a huge chunk of time has passed by.

So what's been going on with us.......in reference to my last blog, we decided not to put Haley in pre-K. She finished out her time at Special Kare (her preschool since she was a baby). It was definitely the best decision for her. She needed more time to develop some of her skills in a comfortable environment before moving on to kindergarten.
However, the transition to kindergarten was a rough one. Really rough....way rougher than the typical new kindergartener. The combination of a new environment, new people, new therapists, and being jerked away from her safety net at Special Kare...all she has ever known, proved to be more than she could handle at one time. She spent the first several days crying...practically screaming, to the point that she had to be pulled out of class because she was too disruptive to the other students. We were terrified that she would get kicked out of school. We were incredibly lucky to get into our local charter school, and to lose that would mean going to regular public school. There is nothing wrong with public school, actually the school in our district is a wonderful school. But the larger atmosphere would have been even harder for her to process.

Thankfully, she is in the hands of the most wonderful staff, teachers, and therapist who are very proactive and more than accomodating to Haley's special needs. First we went with a VERY abbreviated school day where she went from 8 to 11:30. We also had to make very specific adjustments for her. She started wearing her noise blockers pretty much the entire day, they made sure there was someone waiting for her at the drop off line to take her into school, they put a nightlight in the bathroom for her because they couldn't disable the loud fan (she would hold it all day long because she was scared of the bathroom), she had to sit at a separate table directly beside the teacher's aide to help keep her calm, the teacher or aide had to walk with her everywhere the class went. They basically structured their whole day around Haley. Absolutely amazing people! Slowly but surely, we were able to lengthen her school day. It took nearly 6 months, but she is now able to go the entire day. However, I still have to arrive 15 minutes early to pick her up to avoid the chaos of the car-rider line. They still think that is too much for her to handle.

Her therapists and special ed staff are incredible. She still gets all the therapies she has always gotten, speech, physical, occupational, vision, and special education. Her speech has made a tremendous improvement. Her balance and coordination, although still a little "off", has also improved. She LOVES P.E. and recess. She is attending dance class for the second year now. We were afraid that she would get frustrated and want to quit dance, but she is excelling in her own little way. How silly of us to think she would actually quit something. She is a fighter and she never quits!

I discovered today that she has completely ditched her noise blockers. I found them in her bedroom buried underneath some clothes. Once upon a time, she would have an epic meltdown if she did not know their exactl location, and always had to be in close proximity!
She has made a ton of friends. In fact, everyone LOVES her. The kids practically fight for her attention. I was honestly very worried that she would have trouble making friends at a new school. The kids at Special Kare had been with her since she was a baby. They understood her struggles, had learned to understand her not so normal speech, knew that she needed extra help....would the kids at her new school understand/comprehend/accept her? As usual, I underestimate children at this age. They accept her, and seem to love her even more because she is "special".
So why am I feeling the need to catch up? Well, last weekend we hosted the 2nd annual Race for R.A.R.E. I had envisioned this race for 5 years, and finally made it a reality last year. R4R is a project I created that operates under my other brainchild, Jog for Joubert Syndrome. R4R benefits the Joubert Syndrome and Related Disorders Foundation, as well as raising awareness for all rare diseases. This year was a huge success! Haley loved it and has declared that she wants to be a runner. She became very upset after the start of the race. I ran with her for the first 100 yards or so and she started to cry as the pack pulled away from us. She wanted to run the race too. But she quickly got over it and made her own little race, running through the finish line a million times with another little girl also affected by JS. In time my dear, you will be running this race too....in it's entirety!

I have an extraordinary group of friends that I met through my own running adventures. A very special gal named Michele happened to be at my race this year and instantly fell in love with Haley. Thinking about their connection now, I see a similarity. You could judge a book by it's cover with these two. At first glance one might see Haley's differences and assume she is weak, however on the inside she is a tenacious fighter, stubborn to the core, and refuses to give up. Michele is much the same way. She is a tiny little petite thing, with a bubbly personality, and as sweet as can be. You may assume this chick isn't very tough, but she is tough as nails, tougher than almost anyone I know. She runs ultra marathons (beyond 26.2 miles), and she has completed some really really REALLY tough races. And she is about to do something even more amazing. Michele, and her partner in crime Drew, will be embarking on a 200 mile run over the span of 4 days on the Foothills Trail. A feat that has never been accomplished. And she is doing so in honor of Haley. She is graciously raising money for her and the JSRDF. Her journey begins April 25th, 2014.
I've set up a donation page for Michele's journey. For those new here, feel free to browse through Haley's blog. This blog, literally, documents her entire life....up until I became a total slacker graduate student.  Start with the "About Us" tab for a brief synopsis of Haley's journey. Thank you for stopping by if you ended up here because you are interested in Michele's endeavors. And thank you in advance if you decide to donate to her cause. I will try to keep everyone updated!