Jax's 504 Plan review meeting went well.  He grudgingly accepted that it was good for him after all.  Then a few days later we received a letter in the mail about the free practice SAT test that the school was going to be offering to all sophomores during school time.  The letter apologized and said that they were not able to accommodate students who had 504 Plans issued under the Americans with Disabilities Act.  Jax freaked out and said "What?!  I am considered DISABLED because of that?!".  "That" being the 504 Plan. 

I tried to explain he is only considered eligible because he has a condition that could affect a major life function (breathing if he has an anaphylactic reaction).  And of course he does not need any accommodations for taking tests so I told him it was just a form letter sent to every family and student with a 504 Plan.  He is still fuming about it because he is embarrassed.  :\

I feel a little defeated at the moment.  I set up Jax's 504 Plan review for this year and told him about it when he got home from school. He asked me if every kid with a peanut allergy has a 504 Plan.  I replied (jokingly, of course) that no, it was just that I loved him more than other parents loved their children.  He told me that he did not need it anymore and it was overkill.  I asked if he felt that it made him stand out and he said yes! 

The thing is, we never have to even deal with the 504 Plan except for the annual reviews now because there have been no issues. But his 504 Plan stopped his 5th grade teacher from using peanut butter in a science lesson.  And his 504 Plan allowed him to have a separate desk in 5th grade so he did not have to sit at the shared desk beside the kid who brought in peanut butter for lunch every.single.day.

I feel a little sad about him saying this.  I know he is speaking only as a teenager who only sees that it makes him "different" (except that no one even knows except his teachers unless Jax tells them!).  All of the fighting that we had to do with the school district to get this 504 plan in place - from the school nurse, school psychologist, principal to the nursing supervisor and risk management lawyers).  It was a huge fight - a battle!  And it was all for Jax and it feels like he just does not even care about all of that - just how it affects him now.

And logically I know he is a self-centered teenager who does not want to stand out and does not want to seem different.  It is bad enough that he has this allergy let alone having a plan at school that labels him as having a "disability".  He does not realize all of the acrimony and nasty comments from that friggin school nurse that we had to endure.  He does not know all of the hours of research done to prepare for his eligibility meeting. He knows he is a teenager who does not want to be the center of attention.

So I am trying to get over my hurt feelings. And we will go to the meeting and he will sit sullenly and act all embarrassed that I am there but I will know that his teachers will have reviewed his 504 Plan and he will be safe at school.

Why I hate Peanut Butter

Jax's 504 Plan accommodations came in handy today when he excused himself from homeroom while the rest of the class had a party and ate peanut butter cups. While I am pissed about the peanut butter cups and him being excluded, he has matured enough to not feel like he is missing out - he cared more about his well-being. Of course it meant that he sit in the office for an hour reading but better than choking to death from the aroma of peanut butter while 30 other kids ate them around him.

I hate peanut butter. Even if it were just shelled peanuts, there would be no smears of peanut butter around. :\

Ok, off to email the guidance counselor to suggest that his homeroom class might need to have the desks washed.

Jax's 504 Review was yesterday. We now have it written in that he gets an "individual" desk and not one of the the double shared desks. Also, no teacher will use peanuts or peanut products in a lesson plan. If they have plans to they will contact us to work out a suitable replacement. The portable issue will have to wait because they do not know for sure if the 6th graders will be in portables next year. And no movement on the "buddy lunch" and peanut butter thing. We can't win them all, I guess.

Jax told his counselor tonight what happened last week. He mentioned that he was not sure that he liked his teacher anymore because of what happened and his counselor suggested that he might like to give her another chance. I really appreciated that he said that. Jax needs to hear things like that from people other than his parents before he will consider them.

And on another note...

YES WE CAN!

Today, I went for a physical therapy appointment to finally treat Thoracic Outlet Syndrome that I was diagnosed with in January '04! The vascular surgeon told me to get PT and I never went. I had no time! For my "vacation year" this year I am finally making the time for me. And also I have noticed it is getting worse and I have a really hard time lifting any kind of hand weights in the circuit training class because my arms go almost immediately numb when I lift them over my head.

Yeah me for taking care of myself!

Jax's teacher emailed me today because the kid who sits next to him (they share a 2-person desk) had a pb sandwich for lunch. WTF is going on?! It is almost like some sort of conspiracy. Anyway, Jax was very agitated so the teacher asked the other kid to move but told me she could not do that again. She then suggested that she look for a single-person desk to have brought into her room for Jax. She was able to locate one and it is all set up for him for tomorrow (though he probably won't go to school because he has picked up some sort of virus and has a fever and body aches).

I also sent an email to the principal asking for the 504 coordinator info (the dipstick from last year has left the school). We need to get in his plan accommodations for shared desks, pb used in lesson plans and now I am looking ahead at next year when he will be in a portable with no running water. How will he wash his hands?!

First Day of School Part I

Jax and Dex started school today. We walked to the bus stop and waited for the bus to show up. It arrived with a new bus driver who has not been trained to use an Epi Pen so back home we went and hopped in the car so I could drive the kids to school. I met them at the park after school today and will continue to do so this week until the driver is trained (hopefully by the end of this week).

Cars starts tomorrow and I am so happy. I am happy that he is going to school and happy for him because he is so excited! However, I did get choked up tonight and I now know that I am going to bawl tomorrow. I don't want to let him see me cry though so hopefully I won't cry until after he has gone into the school.

One disappointing thing about today is that Jax's 504 Plan was violated(Stephen is mad that I am using that word but that is what it is). The violation was that no note was sent home in the first day packet stating that there is a kid in Jax's class with a life-threatening allergy. I cannot believe it! I mean, it is in his 504 Plan, we covered it at the meeting last week with his teacher and the school nurse. Sh!t! I called three other parents in Jax's class to make sure it was not just our packet that was missing the letter but no. I have sent a note to the principal and nurse (there is a new school counselor but I am not 100% sure that she is the 504 coordinator so I did not copy her) asking what happened and when will it be rectified. I hope that there is one in Cars' first day packet or I think I will lose it. Incidentally, there was one in Dex's packet as there is a kid in his class with a peanut allergy so I know that the letter was at least published for this year (standard form letter written by the district and signed by the principal). *sigh*

Still waiting to hear back from the school. :\

And bro2 sent me this article:
Bullies use peanut butter to threaten kids with allergies from Tuesday's Globe and Mail.

Yesterday, Jax told me that some kids teased him at recess about his allergy:

Kid1: I know you - you are the kid with the peanut allergy!
Kid2: Ooooh, peanut butter finger [pretends he has pb on finger and wipes it on Jax's arm]
Kid3: I had peanut butter and jelly for lunch [leans in close to Jax's face]
Jax: Did you really have peanut butter?
Kid2: Just kidding!
Kid3: Just kidding!
Kid1: [walks away]

Ok, so Kid1 did not actually tease (or bully because that is what I am calling it) but he did not have to point that out to everyone. Kid2 was in Jax's class in Grade 2 and while they were never really close friends, they were friendly back then. Kid3 has never been in his class before but she is in the same grade.

Jax said he was very shocked that anyone would do that to him and he was scared because what if it were true. How incredibly mean of those kids!

I had decided after reading those articles about peanuts and bullying that we were going to take a zero tolerance stance on bullying so I immediately emailed Jax's teacher to report it and to ask her what will be done about it. I won't go to the principal yet. I have also decided that at the 504 Plan review in a couple of weeks we need to address how situations like this will be handled.

I imagine there will be more of this in the coming years, especially in middle school. *sigh*

I conveniently finished correcting the spelling for Dex's class today during recess so I was able to approach the teacher to ask her to please consider placing Dex in Mrs. P's class for next year. She does not have 100% say in the placement as they do have to balance the class out by boy/girl and strong, medium and weak students, but her input will definitely be considered. She said she would do what she can for me and I do believe she will and is not just saying it. I told her that I was going to request "no job share" for him as well so that will cut out one of the classes. The job share class might be ok for him except that one of the teachers was Jax's teacher in 2nd grade when he had that horrible, horrible year. I have heard nothing but good things about the other teacher (and she is a very close friend of one of my friends) but that won't help the other 1/2 of the week as they alternate 2/3 and 3/2 days.

Now I have to work on the wording for the placements forms for both kids. I know nothing about the 5th grade teachers so I will just have to concentrate more on the social needs Jax has rather than the academic and just hope he gets a teacher who works for him. One concern I have is that at our school, the 5th grade classes are in the portables with no running water. Not ideal for someone who has OCD and a peanut allergy so he cannot wash his hands. We have a 504 Plan review next month to discuss how the school will handle this.

TGIF

This seemed like the longest week EVER. All week long I thought it was one day later than it was. I woke up disappointed yesterday when I realized that it was on Thursday. I think part of it was due to the fact that Cars' v-day party was on Wednesday yet I knew v-day was on Thursday.

Aaargh, as I was writing this, holding my laptop on my lap, my very lovely, sweet 4 year old jumped on me to give me a hug and promptly snapped my wireless mouse dongle off the laptop. Serenity now!

I have to go to the school later today to sign Jax's 504 Plan because it needs to be renewed. Apparently the current one "expired" but no one told us and it was only when I went to the school to look into starting the process to get a 504 Plan for Cars for his food allergies that the school counselor told me that my signature was required on Jax's. I wonder if I had not gone to the school if/when they would have ever told me about Jax's!

Also, the school counselor told me to start the process for Cars, I needed to speak to the school nurse. The school nurse then told me that I needed to speak to the school psychologist. The school psychologist was not in that day so I emailed her. She replied that the school counselor needed to be contacted, since the counselor is the 504 coordinator at the school. But, the psychologist has scheduled an eligibility meeting for May 20th. I forsee another clusterf*ck in getting this done.

There is a very good article in Child Magazine this month called Allergy Nation. The article does a great job of explaining what parents of child with food allergies deal with as well as how the children themselves cope. Also, it mentions how parents of non-allergic children often don't get it or feel bullied into not feeding their children the particular allergen.

The article also addresses the fact that some parents have filed civil rights complaints with the U.S. Department of Education (DOE) which is where the 504 plans come into play. Here is an excerpt from the article:

Two nut-allergic children in the Union County, NC, public schools were found by the DOE to have been harassed in separate incidents at Antioch Elementary School and Sun Valley Middle School. Among the shocking findings investigators documented: a parent of a nonallergic child announced at a PTO meeting that he'd continue sending his child to the elementary school with peanut butter sandwiches and tell his child to "smear" the peanut butter along the hallway walls.

Can you imagine?! Telling your child to intentionally harm another child?! It is outrageous but sadly what happens and what we might have to deal with. Recently, I saw a photo of a milk-allergic boy covered with hives after having a straw full of milk spit at him at school by another kid. (if you are interested - click here and then go to slide #7 (takes a minute to load)). The accompanying transcript can be found here (scroll down to pg 28-29).

Again, I know the 504 plan will not keep Jax (and eventually Cars) 100% safe but it ensures that we are doing all we can to keep him safe and live a relatively normal life. And it makes the schools responsible for providing a safe learning environment for them.

One sad note in the article cites a study that found children with peanut allergies have a lower quality of life that children with juvenile rheumatoid arthritis. How sad is that? :(

A Very Happy Friday

Listen! Do you hear that? It is the sweet sound of rain! Pouring rain! Oh, yes - it is raining!! No more snow! Most of the snow has already melted. Who knew I would be so happy to welcome the winter rain?

Yesterday I signed Jax's 504 Plan at school and it is official. Well, except that the 504 coordinator for the school did not actually show up at the meeting and it will not be totally official until her signature is on the plan. I could tell that the principal and school psychologist were not very happy about that. Anyway, they will send me one more copy of the plan once it has the coordinator's (she is the whack school counselor) signature. After the formalities were complete, the principal asked me if she could refer other parents to me who were interested in going through the same process. WHAT?! Does this mean that the school district has had a change of policy and they will be writing up 504 Plans?! It felt so weird because of the tension filled meetings we have had in the past.

No Cosmo Friday today because Ash's dd is sick and Laurie cannot make it either. So instead of Cosmos, I shall imbibe in chocolate. More satisfyinig anyway. ;)

Now, I am off to Costco to buy TurboTax ($15 coupon in the Costco wallet savings booklet) and pork chops (coupon there too). And to get some veggies. Generators are $200 off this week too. Hmmm...

I met for nearly 2 hours with the school counselor, school psychologist and school nurse. They are not budging about having the classroom be peanut-free this year. They said they can "request" it and put up a sign ("No Peanuts Please" vs "Peanut-Free Classroom"). I have tentaively agreed to go with a Health Plan vs a 504 Plan to see how this works out. The school psychologist asked me to sign a form stating that we were all in agreement that Jax did not meet the eligibility requirements for a 504. I said I would sign no such thing because under WA State law, he does:

Does a student with a “life threatening health condition,” as defined by state law, automatically qualify as a disabled student under Section 504?
Yes. Because state law, SHB 2834, defines “life threatening health condition” as a
health condition that puts a student in danger of death during the school day if a
medication or treatment order and a nursing care plan are not in place, by definition, a student with a “life threatening health condition” has a physical or mental impairment that substantially limits a major life activity, and qualifies as a disabled student under Section 504.

The nurse agreed that he did meet the requirement (anaphylaxis affects breating, one of the major life events covered under the 504). I have taken the position now that until it affects his school work, we will keep it as a Health Plan.

So, Stephen and I will review the Health Plan and we will discuss the peanuts in the class thing. We did not get much notice about the meeting this morning so he was not able to clear his calendar (mtgs re: shipping VISTA). I was mighty pissed off about it, btw.

The school nurse loved to say "He has to learn to live in the real world". No shit, Sherlock. That is one of the things that makes my blood boil. Jax does live the real world. Jax lives with the reality that PEANUTS and/or PEANUT BUTTER can KILL him. Or put him in a coma and leave him brain-damaged from lack of oxygen. How more friggin real can you get?!

Ok, time for me to calm down...we are off to meet the teachers now.