Get a Grip and man up, Mommy!

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.

Kindergarten and Football - here comes the FALL!

I haven't forgotten!! This is my self-therapy session - I'll never forget. Like everyone else; life gets in the way sometimes. It's summer vacation too which, in this house, just means a later bedtime!

To start, I'd like to share Killian has been reaction free for OVER a YEAR now! That's huge for us! HUGE. It's almost unreal to me. I guess we had some unfortunate times to get through in the past.  I remember meeting other parents of food allergic children and being shocked that they never had bad reactions, never used the epi, never rushed to the hospital, nothing like our family. For a while, about 3-4 years, I thought maybe it was our fault. How did we have so many incidents (even just one being too many) and others had none. We had 2 incidents where the hospital asked why we didn't give the epi pen. The first was a lesson, with the Benadryl, we didn't know if we could. The 2nd, well - I wasn't there for that one so I don't know.

After having switched allergists and just learning in general how severe Killian's allergy is, I've realized it's not us. We haven't neglected or misjudged...he is THAT sensitive. His allergist informed us he has reacted (anaphylaxis or very serious) to tiny, trace amounts that even her most severe patients have never reacted to. Soooo, that kind of makes me feel better? I'm not a bad parent like I thought.


We're getting ready for Kindergarten now! It's exciting. And exhausting. Killian will only be attending "part time" because of the size of the school district. I now realize how much better this is for me, as I was originally upset he was being robbed of full day curriculum. NOW, I get to ease my nerves into this whole BIG school transition. Baby steps. Next year we can deal with the cafeteria and playground and school bus, this year the cubby and table and crafts will suffice.

This particular school district has been a bit of a headache for us; being our only child and first time entering public school with food allergies. It's gotten much better...since we retained an attorney to help. Still much better though - progress is being made and I can honestly say the people I have been in contact with certainly make me feel like Killian's health truly is in their best interest. Today I spoke with the school nurse and she informed me our request for a dairy free class will most likely be a "Go".  When I asked for BOTH classes (Killian is a.m. and another group shares the same space for p.m.) to be dairy free - I could tell bricks were being put back up on that 'wall'.  The meeting is next week, I won't raise hell just yet. If this were a peanut allergy, it would be a.m. and p.m. "peanut free" no questions asked. Again - baby steps. We have an attorney so I don't get over emotional (not that I'm like that! [sarcasm]) and flip out. It's amazing how calm I've been since this process began! Our attorney definitely earned his keep. We met him on a Monday, he informed us he will get a letter to the school in the "next couple of days", by Wednesday I had a phone call to meet the school psychologist. I called and emailed in June and was told the school had 60 days to reply. And they meant  it. Very lucky to have Ken Ritzenberg in our corner!

Still dealing with new "firsts" and stress. Let's face it - the stress will leave when the allergy does! Which reminds me - Killian's blood work was still "off the charts", dairy count is over 100 meaning it's not going away anytime soon. Sorry for the scatter brain.

Football started tonight, flag football. It was fun and exciting, just like it should be for a 5 year old. Naturally I reached out to the coach as soon as his contact info was in my possession. Thankfully, ONCE AGAIN, we've been given a great, understanding parent to watch after our son. Coach is completely committed to keeping Killian safe, and informed the other parents we're a dairy free team. He insists I do not spend any of my own money on snacks and to just supply him with a list of safe yummy snacks and eateries. Normally, the teams have ice cream and a pizza party afterward. Our team is modifying that! I was blown away when I met him tonight, introduced myself, and his first response was that he let the league president know so the other teams we play are careful and wash up before playing us. I don't know the details of it all yet, but he mentioned it before I could, it was at the tip of my tongue! T-ball was easier. Non contact sport, the players only shared equipment (bats) with their own teammates. Flag football - now that's a LOT of different hands on everything. I'll be the hawk on the sideline. LITERALLY ON THE SIDELINE.  So far, no parents have complained or approached me about it. Score!

One little thing that tugged at my tear ducts yesterday - Killian was showing my grandmother his new Epi-Pen carrier pouch. Enclosed in it is a card with instructions to administer the epi. He "read" it to my grandmother ("Gigi").  Killian knows all the steps because we've trained him (in case he's with someone else and he needs it, NOT to give it to himself yet) and also because he remembers Tony administering it to him last year. As he explained step by step to my grandmother I beamed with such pride. He then finished his instruction lesson with "so I don't die" and I left the room. He says it so matter of fact-like, with such confidence, as he should, but my god he's only 5!  I'm glad he knows and understands - it's how he easily teaches others about it, old and young. I just wish he didn't have to. It's one thing to say be able to say it, but understanding it and at such a young age...I guess I'm the one who can't handle it.  We see the fear too often, he gets it.

Okay, I'm done for now. Sorry it's been so long, we've been busy too. Pub Crawl for Food Allergies is 9/7 at 6:30, starting at Pearl St. Pub (downtown Albany)! Hope you can make it and help support our team - Bovine Intervention  Our team goal is $3500.00! Let's do this!
Thank you for all your support!  <3

http://www.foodallergywalk.org/faf/donorReg/donorPledge.asp?ievent=1062783&lis=1&kntae1062783=FA66ABA9EB74424C8CC11EE816E4A49D&supId=379100499