Friday, July 10, 2015

Preschool woes, CHaD Allstar Football & PUPPIES!

It has been a wild ride over the last few weeks and it seems crazy that we're already a week into July!

Back in the beginning of May we had Cameron's IEP meeting with his Preschool teachers and other staff. The decision was made that Cameron would go to summer school (gasp!) as there was clear evidence that he had some motor regression after not having physical therapy at school all summer and fall last year. He also has some minor fine motor delays, such as his inability to grasp scissors and write at an age-appropriate level. The preschool he attends is going through some changes this summer, and thus is taking place at his new elementary school, instead of the school it had been in. We're excited about this because he will be able to learn the new space he's in (they're actually using the Kindergarten classrooms), with the people he's comfortable with (he has the same teachers) all before adding the other kids, new staff and longer days.

After Cam's official/unofficial Preschool graduation
So Tuesday was Cam's first day at summer Preschool.
As I dropped him off, I needed to hand off his Diazepam to the nurse. Naturally, I asked where the nurse was, to which I got look of surprise and an answer that equally surprised me..."Cassie, we don't have a nurse here over the summer." (Insert car screeching to a halt sound clip) Me: "Oh...You don't?" Summer Preschool, as I know it, is for students who the teachers feel would suffer a negative impact in their skills by going all summer without school or therapies. So these students, many of whom have special needs, go without a nurse? Now, there is a nurse on call, but she could be anywhere in Keene during the day. In the moment, we threw together a quick plan that involved Cameron's teacher calling Shawn at the first sign of a possible seizure, so Shawn could get there quick to administer the diazepam - which is supposed to be given for a seizure after 5 minutes from it starting. As I walked away from the school, I was oh, so totally uncomfortable. I could feel my mother bones yelling at me saying "THIS. THIS is the time you advocate for your child!" I frantically sent Shawn a text and we briefly discussed the plan, but it was all too unsettling. If Cameron were to have a seizure at school, the teacher would need to first, notice that it was an actual seizure, then find a phone, then find Shawn's phone number, then call Shawn. Shawn would have to go downstairs to his car and drive a little over a mile through 3 street lights and get to wherever Cam is, get the diazepam and administer it...all within 5 MINUTES!

Luckily, Cam is only at summer school for 2 hours, so there wasn't a whole lot of time to ponder this. By the time I got back to school to pick him up on Tuesday, I had my speech all laid out for what I wanted to say to encourage request them to at least have the floating nurse be stationed at Cam's school. As I walked up to the school, the Preschool director walked out with a big smile on her face and said "WE HAVE A NURSE!". As a mom of a child with epilepsy herself, I know she could sense my concern, and probably felt it herself.

As Cameron gets older and we are less involved in his every day world (sniff sniff), it seems there are more questions to be address and more concerns to be brought forth. We recently had to discuss his transportation to and from Kindergarten. He, theoretically, could take the bus to school, but my first question was, "Is there someone to help him if he has a seizure?" The answer: No. So, Cameron cannot take the bus. Students with mobility limitations can have added support on the bus, but he does not have limitations which prevent him from physically getting to school. We have been lucky enough to have Cameron stay with the same teacher in the same classroom for his two years of Preschool, but new teachers mean educating them on the signs of his seizures and new nurses who need to learn about him and his medicines. Having worries about new schools, transportation, new teachers, etc. are all things that most parents worry about for their child, but with Cameron, there's an added layer.
Anywho, we had a GREAT time at the CHaD East-West Allstar Football game a few weeks ago! I thought I'd share some pictures from the night. Cam did make it on TV for about 2.2 seconds as he walked onto the field. ;) Here are some pictures from the fun!

I'm also super excited to get going with my official fundraising for CHaD HERO!

-First on the list is the Paint Night this Saturday, July 11th at my house in Keene.
-I'll be having a Noche Mexicana fundraiser at Margaritas in Lebanon, NH on Thursday August 6, 2015 (and will be doing one at the Keene restaurant as well, but I'm waiting for confirmation of the date from the manager). 
-Ramuntos in Keene will also be helping me organize a fundraiser night, but we're also working out a date.
-I'm starting a t-shirt campaign soon, but (again) I'm waiting on the "OK" to use the CHaD HERO logo on the shirt before I can start taking orders. More info to come!
This is our stinkin' adorable, super well behaved (most of the time) Bernese Mountain Dog/Golden Retriever mix puppy REMY!

Don't worry, 'bout a thing
Cause every little thing is gonna be alright

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