My last post never got into my original topic. Perhaps that's the beauty of a blog. I still dislike blogging but as long as people are learning something from this, I shall move forward! I need to back up and start over since I casually jumped over 3 months and tried to pick up like there was no distance between us. Blame my mind. It did it, not me.
Back in June I contacted Killian's new school regarding a 504 meeting. I was originally misinformed by the school nurse that a 504 Plan was not needed "unless we felt the school wasn't doing a very good job handling Killian's allergies". What did I know- he's our only child, entering a public school for the 1st time, and has a life threatening allergy. Naturally I questioned her reply, as I was not the slightest bit comfortable with it. Why should we wait until something goes wrong to address it and keep it from happening AGAIN? If you've been following, you probably know my way of thinking by now; Think. Over think. Mentally create EVERY outcome possible. Mentally RESOLVE every possible outcome. Make sure they never fucking happen! My brain is on overdrive, constantly. It's almost as if I believe I have some power over my life and imagining worst case scenarios. How can they happen if you've put it out there. "The worst thing you could ever think of happened!" Boom. Now I've jinxed it and it won't. That's my mentality....maybe I need help, but it's worked so far.
So - back to the 504 - I wasn't comfortable with that suggestion. I asked around. EVERY answer was the same. You need a 504! Doctors, friends (parents of food allergic children) and attorneys all agreed: "You need a lawyer if you're dealing with Shen" (school district). It's been a much smoother ride since retaining ours, true to his word I must say! My phone calls, emails and "written notice" received very little recognition. I realize it's summer vacation but I was proactive and called in January, before Kindergarten registration. I was simply misinformed. It is to my understanding the district doesn't like to deal with our kind of situation, nor do they like to spend any of their money on extra care that our son may need...maybe they forgot they are a PUBLIC school? Anyway, our attorney sent a letter and within 24 hours we were dancing to a different tune. Since then, we've been dancing to a different tune! It's been great and I wouldn't do it any other way. Not when Killian's life depends on it.
The school psychologist and I had a lovely, 2 hour meeting where I poured my heart and soul (I feel) out for her to fully understand and formulate into his health action plan. We covered ingredients, symptoms, medications, past experiences, possible scenarios, my expectations of the school, Killian's level of advocacy and understanding. It was intense and emotional. And the whole time I couldn't help but think "is she analyzing me? What will she think of Killian when she meets him? What will she think of US when she meets him?" I'm hoping none of those go through her head and I'm just paranoid. It really was a great meeting. I left feeling confidant in my decision, in my expectations and understanding of what a typical day for Killian will be. I also felt fully supported by this woman.
In the weeks following, I've received numerous calls from the school nurse and psychologist. Forms, meetings, drafts...our mailbox holds a "Shen" envelope nearly every day. Our meeting is next week.
We are part of the committee for the 504 Plan. The 2 above mentioned staff members, a Special Ed faculty member, the school principal, the school's attorney, our attorney, our allergist, if needed, and us. Together, we will all make the best decisions to ensure Killian is safely included in all activities while attending school.
Earlier this week I received a call from the nurse explaining some forms being mailed out and also that it looks like the class will be Dairy Free. I asked if BOTH classes will be, as Killian is in the morning session and other students will be in the afternoon session, thus sharing cubbies, tables, chairs etc. The nurse had to run that by the Principal. Slightly aggravated, I agreed to hear back. After all, if Killian still had his peanut allergy, that class would be Peanut Free for both sessions, no questions asked. However, since it's dairy, most don't consider it nearly as severe. The nation is growing accustomed to peanut and even gluten. Dairy allergy is often brushed off a lactose intolerance. Again, I shut my mouth. I figured our attorney can handle it at the meeting, that's what he's there for.
Today I found myself opening yet another envelope from Shen. Every time I open with anticipation of discovering who Killian's teacher will be! Not that it matters, I don't know anyone in the school...hahaha! I'm just excited for his newest milestone. :) Well, it wasn't that. It was the draft of his health action plan. It is a very well organized, spreadsheet of symptoms, foods, protocol, staff responsibilities, anything you can think of when handling a child with life threatening allergies...(dog, dust, tree, mold, grass, asthma - it's ALL there!) Every word I said to the psychologist is in there. Reactions he had in the past, trips to the E.R., things he'll say that put you on notice for the epi pen, afterthoughts I called and left messages about - on there. One being the school's restrooms cannot have dairy soap. The school's custodians will be checking ALL of the soap/soap dispensers prior to school starting. I'm not kidding, we covered it all. We have to. His life depends on it.
One thing I didn't mention in this post is my lack of sleep these past few days. Very little! One night was due to my hawk-like watch over Killian when he presented with symptoms right before bed. If you've ever had to deal with a severe allergic reaction you know what I mean. I'd doze off and jump up feeling his chest for breathing and feeling his head for warmth. It's terrifying. I fell asleep (several times) watching his chest go up and down, noting his breathing was calming down more. I woke him to talk to me, so I could be sure his throat was completely clear again, just to be absolutely sure even though it had been hours. He did not have an anaphylactic attack this time, but it was still serious and always scary. What seemed like eternity was checking his symptoms after the Benadryl, deciding whether or not the epi and trip to the hospital would soon follow. I'm glad I can say they did not.
Lack of sleep, very recent and scary reaction, and this multi-page plan in front of me. I casually read over it, making sure his name was spelled correctly, his birth date was correct, the usual. Basically, I dictated the thing so it shouldn't be a surprise what was in it, right? I blame the above mentioned culprits for this - I cried my eyes out. Here it is, in black and white, what can take my son away, how it looks when it's happening, and how to pray like hell and make it stop! I relived every trip to the emergency room, every reaction, every dose of epi and steroid he had been given, every needle, every test, every shaking voice, every look of fear, trying to keep him awake and conscience - squeezing his chubby little leg and nudging his sweet, soft cherub cheek! It hit me all at once, staring back at me from a single page. I cursed the heavens. I questioned why, why food can take my child from me. It wasn't a sobbing cry. It's the cry where you have a lump in your throat, your heart literally hurts from the pain you feel, and your eyes just pour tears like there's a never ending supply from your soul.
Then I look at him, playing in the dirt careless as can be. I again tell myself "it could be worse". I put it away, clean up, and then snap out of it and finish reading the packet I received. I WILL be ready for our meeting, he WILL be safe at school and we will get through this latest transition. My mind has decided to prepare for a fight from other parents, hopefully not. The rest is behind us and should be easy for now. I won't worry about next year's challenges, as there will be PLENTY of new ones.
Maybe I will be one of those crying moms left on the sidewalk on the first day of Kindergarten. But I assure you - I will be crying for a very different reason.
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