Friday, September 6, 2013

the day that almost didn't happen...

are you ready for this long wordy post?

i tried to keep it short and simple but throughout this whole illness i have tried to be as transparent as possible, if only to even help one person going through such a bizarre thing like this. i also know a lot of my readers are genuinely interested in everything related to rowan's recovery and i am happy to keep you in the loop, so here you go...

back in june rowan's physical therapist lit a fire in me to get her into full day kindergarten. we hadn't considered it as a option prior because i stay at home and here in washington you have to pay around $400-500 a month for full day (silly, i know). fast forward and all of her therapist concurred that moving forward, by september, a full day of school was going to be the best way to phase her out of outpatient therapy through providence. i called the second to last day of school and had rowan added to the wait list, spot six.

the school staff was back in the office on the 20th, just a few weeks before school was starting and i got to work advocating for rowan, making sure all of the necessary supports were in line, at that point full day wasn't really on my radar, assuming the list wouldn't budge much. rowan's school was so great from day one - although super busy and i had to keep reeling them back in, they stood behind her a hundred percent and had known about her story since may. her principal had even done a bit of research so he knew more about what had happened to rowan. eventually a few days later i got a call, there was a new full day class and a spot for rowan. i eagerly accepted the spot but then started explaining, since this was disability related the only way we could swing it is if it were free to us. i was patched over to the principal who called me back within hours of leaving him a voicemail. we talked for awhile and he explained that there were scholarships available and that he would advocate for rowan to get one, a huge criteria being there had to be a substantial educational need for one, rowan being the perfect case!

within days we had the approval from the district and rowan was put in the full day class. we got to meet the teacher one-on-one and instantly felt a great connection with her and it was so comforting to see how she interacted with rowan and didn't even skip a beat on her obvious disabilities. she already had her seat assigned right up next to her desk and was totally informed on rowan's story. that day i also had spoken with someone from the school's team that handles the 504 plan, iep etc. turns out that she is the sister of rowan's pre-k teacher and had also known about rowan and her story from day one. god has a plan, a perfect plan.

we got rowan's 504 plan rolling, which mentioned the drinking issue (that was later cleared up) and a few other suggestions for people that would be working with rowan though out the year. everyone agreed that rowan probably wouldn't qualify for any in-house therapies but would still need some special considerations. we all felt really good about the first day and started to really look forward to it. a meeting was scheduled for the school staff involved in rowan's day to day, the day before school started. they were going to go over the plan and make sure everyone was on the same page. that morning i got a call that, for a week now, children's had been ignoring the school calls about needing the updated report from her follow up the week prior. they were a little frantic and asked me to bring in any paperwork that i had - all i had was her discharge summery, back when she couldn't talk or walk or barely eat and i was super hesitant to hand it over. the meeting came and went and based off the papers i had given them were a little panicked. this is when the report finally came from children's, at four the night before school was set to start. 

the report was long and overly complicated and as it started to come out terribly inaccurate and based off of the ten minutes each therapist had spent with rowan, not getting to know her real recovery at all. the school then called me to tell me that rowan couldn't start school the next day until they got a better handle on the whole thing. i started crying right there on the phone, i was devastated for rowan and even harder was having to tell her when i got off the phone. no begging was going to change their minds so we scheduled a meeting for the next day - they were treating rowan like she was difficult and maybe a danger to herself, what?

there had been mention of the tiny possibility that rowan could stay after the meeting so the next day we got dressed in her first day outfit, backed a lunch in her backpack and snapped first day photos with a chalkboard. we headed off to the meeting, robin desperate for a nap slept on my shoulder from the car and through most of the meeting. i had thought to bring the ipad for stella and rowan's teacher stole rowan away to the class the second we got there. my worries were instantly put to rest when it started to unfold that the delay in starting was just because of the 11th hour report coming over and they wanted a chance for the whole team to look at it and feel best prepared for her, unlike my first impression that it was because there were real concerns. the nurse, psychiatrist, special needs personal, the speech pathologist, etc etc all sat in. we talked about the new thin liquids report coming through from her actual speech therapist at providence and that was all put to rest - otherwise it meant rowan would have had to eat lunch in the nurses office. we went over the occupational notes that rowan was up to par with most all kindergarten gross and fine motor expectations, with some minor gross motor delays that wouldn't cause her any issues. when we got to the pt report, it mentioned what i had already talked with children's about, that the school pt or nurse might want to spend some time outside with rowan playing during recess so that they could make their own assessment of her safety but that there was no concern. since the schools pt is split between multiple schools, until she can come do that rowan has a alternative recess either hanging out with the nurse or in the solution room.

when the meeting wrapped up i signed the new proposed 504 plan and the principal ok'd rowan getting to stay for the day. it was only a hour after school had started and i was overjoyed that she was getting to be a part of so much of the first day still! she had a great first day, she was a little tired and hungry when she got home and i got a stern talking to about packing extra snacks for later. it will be an adjustment for sure going from four days of two hour pre-k to all day school five days a week. she has already made new friends and last night i got a text from her teacher with some pictures, saying that she was so happy to have rowan in her class, that she is a total sweetheart and this year is going to be great for her!

this whole experience has created so much empathy within me for families of special needs kiddos. i'll only have to deal with this stuff for a short time in comparison and i am so so exhausted from day to day with just the little bit of work i am doing to advocate for rowan. i can't even imagine the constant struggles that some of my friends go through to stay on top of things like school, so kuddos to you guys i don't know how you do it but you are all amazing!

how cute did rowan look on her first day?


melissa rohr said...

This is so wonderful, you are so wonderful, the school is so wonderful, ROWAN is so wonderful!!!! Best first-day-of-school story I've seen yet. <3

melissa rohr said...

thank you kelsey!!! it has been quite the journey getting here but i am just so so thankful that she was able to start school normally considering where we were three months ago!

melissa rohr said...

YES! Special needs kiddos DO need advocates! When my youngest sister was 12 she lived with my ex husband and me for a year and she had special needs. It was the hardest(!!!) experience I've ever had between school and therapy but I'm a better person and mother for it.

You're such a great mama! Love Rowan! :)

melissa rohr said...

i didn't know that you had been married before! we have more and more in common all the time!