Archive for July, 2013

Section 504

Oh, time to blog again.  I am stressed.

I have been trying to get a 504 plan in place for Wesley for over a month.  Because of his life threatening allergy to milk, he is eligible to have this plan written out so that the school staff will have a guide of what is acceptable and what is not so that his life is not in danger and so that he can fully participate in school activities.  I can include things like sitting at a lunch table with other kids as long as they don’t have milk, and cleaning off the table with clean soap and hot water before he sits down.  Also, not using his allergen in the classroom as a teaching tool, washing hands after eating and things like that.  If they don’t abide by the plan, their government funding could be cut.

I am sure I am already starting out to be a major pain before the first day of school is even here, but I told the guidance counselor, Mrs. Powell, what needed to be done back in the spring when I preregistered Wesley for Kindergarten.   This summer, I called the special education coordinator because she is who would help me to get this going.  It was her last day so she couldn’t help me.  She resigned!  They have yet to hire a replacement.  I have called back to the board of education twice a week since then and they still have no one.

Yesterday was Wesley’s kindergarten screening.  I have been pretty calm up until then.  I talked to his guidance counselor while he was being tested, and she informed me that the school is under construction, people are on vacation, and she wasn’t going to tell me who Wesley’s teacher will be until the Friday before school starts.  (It starts the following Wednesday.)  Then, on top of that, she told me that they were not having an open house this year, and there would be no way for me to talk to his teacher until the first day of school!

What the crap?!?

She said she would tell the school nurse.  I do want the school nurse to know, but she isn’t the one who will be with my child all day.  I just never imagined that it would be this difficult to get some cooperation with such a serious issue.

So, not only is our 504 plan not even started, but she wanted me to send him to school without educating his teacher about his allergies.  Yesterday, my day was ruined after that.  It was miserable.  I didn’t know really what to do.  I did as much research as I could and I was intending to talk to the superintendent today, but in all my furor, I woke up this morning at 4:00.  I decided to email the guidance counselor and explain my situation.

I don’t want to be a pain in the butt.  I want to be a HUGE part of Wesley’s education.  I want to help out at school and I want his teachers to like me.  I don’t want to start out on the wrong foot, but what am I to do?  I am not going to risk his life!   I really didn’t want Wes to miss his first day or week of school.  It would be such an injustice.

I know that some people whose children have never had allergies really just don’t understand why I would not send Wes to school until things are fixed.  But Wesley’s life is more important to me than anything.  I absolutely refuse to risk it.  I can’t send him in there with a lunch room full of milk cartons and kindergartners without first explaining some things to the people taking care of him.

Today, I feel a lot better, but still freaking out.  Mrs. Powell emailed me back and said that she would arrange for the 504 meeting the day before school starts.  That is much later than I would like it to be, but atleast it is getting done.

I have all my stuff printed out.  I just need to get his doctor to sign.  I’m hoping that was the worst of it.

Whew, feeling better already!

Summertime

Wesley’s summer has been very eventful so far.  It seems like it is going by so fast.  Too fast.  In one month, he will start kindergarten.  That makes his Mamma’s heart break.

We have tried to stay busy and have fun before school starts.  I bought us season tickets to the water park and we have been going once or twice a week.  We have traveled to Indiana to see our cousins, then to Cincinnati for a NephCure walk, then to Johnson City, Tennessee for our convention.  All back to back.  It feels good to finally be home and not traveling.

My most fond memories are of summers when my cousins would come visit.  We would have the best times playing all day, then staying up late catching lightning bugs and looking at the stars.  Then we would go to bed, wake up and do it all over again.  I want that for Wesley too.  He has lots of cousins and he loves them all.  We have gotten together with them a few times this year.  It seems the same as it was for me when I was little.  Even though they only see one another occasionally, they are best buds when they get together.  It’s like they were never apart.

This summer, with cousins (and friends as close as cousins) we have picked strawberries, went to the fair, swam, hiked, learned to shoot a bow, dug in the dirt, gone to the drive-in, caught lightning bugs, cooked out, roasted marshmallows and got a few boo-boos.

I would call that a good summer for a five year old boy.

The best news is that Wesley has been in remission for ten months!  It really eases the worries.

It’s not over yet.  We still have time for more fun.  As a Mommy, this has been my best summer yet!

Summer Fun