Saturday, July 13, 2013

It's Time to Share the Good, Me Thinks.....

Well hello strangers! Or is it I, that is the stranger here? I AM strange - so maybe that counts for something. Anyway, on to the more pressing matters. I was going to write about my feelings on yet another viral posting on food allergy haters. I'm already bothered that the "bullied" have become the bullies in this scenario, but I'm not going to rant/vent on that. INSTEAD, I'm going to tell you a story of hope (I hope).

If you go back on my blog, you will see, it's not been an easy road for us - there have road blocks, persons being intentionally difficult and there have been times I felt like hiding inside my home and not coming out. Throughout most of those difficult times, there has been something wonderful though - Liv's school staff. Did it take an act of Congress to get her enrolled in school? Almost (I mean that literally). Do I think I've ever gotten through to her principal, about what it means to care for Liv? Probably not. Have her teachers, aides, school nurse, school secretary, parent volunteers and almost everybody else that cross her path protected her, cared for her and loved her like her own? You betcha.

Liv's first experience at her current school, was preschool. This is separate from the elementary, but shares the name and location. Her Director there could not have been more of an ally. She heard my concerns and she didn't bat an eye. She walked me RIGHT over (yes, that moment) to the teachers that would be in Liv's room.  These women would be the first, in a school setting, that I would experience. Would they cringe, would they tell me I had no right to ask for accommodations, would they tell me there was no way....? Nope. They looked at one another, looked at me and then looked at Liv - and they said, "We've got this. Give us a week to gather our thoughts, on how to best protect her, and we'll be in touch." They were in touch, and they came up with a plan that I just didn't even know was feasible in a classroom setting and one I never dared thought I could ask for. During the middle of that school year, Liv would have her tonsils out. Not only was her preschool staff concerned - the Director drove the hour and a half to the hospital...she surprised us in pre-op with some stuff to keep Liv busy there in the hospital and with a sign from her classmates. That was my first introduction to school and my food allergic child. Thank goodness for them - they are angels. Every time I see them, they still greet me with a smile and ask about Liv.

Liv with one of her Preschool teachers.

After preschool, and going into Kindergarten I hoped for much the same. Well, did I get slapped in the face with some hurdles there! You can read about those another time though (in earlier posts). We got over the hurdle and I met the staff that would be responsible for Liv's school experiences. In my first meeting with this staff, they all stared in bewilderment....what did Liv's health mean for them? How could they reasonably accommodate her, why did we have to walk into their school? Yes, you could read most of those thoughts in their faces...then something happened, their faces changed. They looked over at Liv who was peacefully coloring and listening in (she's been to every 504 meeting thus far). They saw it - the child who looked so "normal" on the outside, but clearly had some health needs. A collective deep breath was taken and then a meeting that lasted hours ensued. Ideas came pouring out from each of us and put to paper. We each took that paper home, read through the ideas and came back together a bit later to weed out the unnecessary and fine tune the necessary. They played the role of devil's advocate and played it well. This still meant I had parents to meet/work with. I was nervous going in, I won't lie, but I wouldn't trade that for what I got in return! These parents didn't understand food allergies in the way Liv's present - but they had zero issues with learning, protecting and becoming proactive! Did Liv have a successful year? Yes. She missed a lot of school due to illness, but in our world, that's pretty normal and to be expected.


Graduating from Kindergarten!!

First Grade: This was going to be a challenging grade. It was the first year we had the lunch room to contend with. I can't even, adequately, put into words the anxiety this brought on for me. I was terrified, pure and simple. So, at the end of Kindergarten all of us from the first meeting came together again at the end of the year, this time with Liv's future First Grade teacher. There it was again - that wide-eyed look of terror over having Liv in her class. This time, there was another teacher in the room to put her hand on the shoulder of the new teacher, telling her, "It's gonna be great, she's a great kid and her accommodations are not only doable, but become habit and so easily part of the day." The Kindergarten teacher then made her exit as we talked lunch room. Several ideas were shot down as quickly as we thought of them (shot down by all of us), but some had weight to them and are in place to this day. A week before the First Grade school year began, we met up for a less formal 504 meeting - just to fine tune the details, and the Specials (Art, P.E, Music) teachers popped by, much to my surprise! They too, wanted to know the fine details and be a present part of these proceedings. Again, a year that really went well - teacher got it, parents go it, staff was a team WITH me. This was the year that I realized Liv's peers were her advocates and allies - they even took notice and went the extra mile, all to ensure their friend's safety and inclusion in all they did.


Special delivery from her 1st grade aide, on her birthday!

This past year was Second Grade for Liv and would prove to be the most pivotal year yet. Her teacher was not only somebody that I already knew as she taught Tai several years prior - but my family knows her. She knew of Liv's health concerns, she knew Liv was going to be challenging and she requested Liv be in her class. There was no look of shock or bewilderment - sure some was a bit overwhelming at first, but she knew what she was getting into for the most part and she wanted my child to be in her class. She took all the necessary precautions like all the teachers prior. Once, after a lockdown in the school, I asked out of concern - what if Liv needed emergency help...her teacher looked me in the eye and told me, "Billie, I won't be leaving her side for a moment and I can tell you with certainty...if her life were on the line and it meant me breaking protocol and losing my job, to save her...she would be just fine and I may need a place to live." She joked at the end, but she meant that and I knew it. This teacher texted me throughout the year checking on Liv when she was out sick, or had an important Dr visit. She even showed a child level educational video on food allergies in Liv's class and then opened up the room to Q& A session with Liv. She didn't just care for Liv, she empowered her. She gave her ownership of her food allergies and this gave Liv's peers understanding vs fear of Liv's needs.  Again, another successful year of staff, parents and myself being on one team - for all of our children. I could honestly go on for days and days about her second grade teacher as she was so much more than I'd anticipated for Liv, and that's saying a lot considering I already knew she was amazing.

Halloween in 2nd grade!

And throughout all of the elementary years, at so very many meetings there has been the support staff: Secretaries, Counselor, School Nurse, District Area Nurse, District Director of Health Services, Specials (Art, P.E., Music) Teachers and Aides. These folks have done it all, from being a shoulder to lean on, being actively involved/concerned with Liv's hospital/Dr visits and medical tests. They've sent her home with flowers and even had flowers delivered on her Birthday.

 Flowers given to her by one of the school secretaries, just because. :)

All of this crazy long post is simply to put it out there - school is not always a nightmare scenario for Food Allergic children (or those like Liv that are also chronically ill). It's not always easy, there are a LOT of meetings, lots of phone calls, emails and hard work involved, but it has been my pleasure working with Liv's school. It can (and should) be a wonderful journey that is educational, encouraging, inclusive, empowering and full of wonderful happy memories. Thus far, that's been the experience for us, and I wish it to all of you as well!

Liv on the far left...on the last week of 1st grade on a field trip, saying goodbye to 1st grade and HELLO SUMMER! 


**This blog has been brought to you by a friend stating that "It's human nature to complain." Maybe she's right, but I took that as a challenge and my son's favorite saying came to mind, "CHALLENGE ACCEPTED." This is me not complaining and this is me spreading the good that can come from an FA child in public school settings.**

1 comment:

  1. I like your friend's comment about it being in our nature to complain. I think from complaints, brilliant ideas are born. Change is born. Thanks for sharing that sentiment.

    ReplyDelete