Tuesday, August 14, 2012

Help me I am begging you to give me your feedback!

As the last post  Hand outs to the parents and teachers stated I sent the teacher a letter explaining my child's needs and made simple send home info for the other parents. After asking a few parents it turns out the teacher never handed out the info to the parents with all the other forms during Open House.  I also have sat down with her explained my child's needs, how simple this is, how wonderful and supporting most of the other parents are.

On the first day of school the teacher requested we have a meeting after school ended that day (half day the first week). I went to the meeting where she said she and the principal felt for my daughter's safety it was best that I be the only one to supply her with a snack. To make sure that she knew the difference between her snack and her lunch and to make it healthy (did I mention it can only be store bought O_o. )

So after paying for all the tuition, all her uniforms not to mention shoes, socks, all her supplies and making sure she has Gluten free supplies, Trying to anticipate all of her art supply needs So I can order the gluten free versions of those and buying the Gluten free shopping guide for the teacher thinking she would actually use it.  I have spent a lot of money.

Now My daughter having gone to school with many of these children last year at the same school is used to being able to eat snacks that are GF and eat the ones I provide when they are not.  So I tried to explain to my 5yr old how she would no longer be allowed to eat what other children brought in. I said that I would send her a snack everyday and she would eat that instead. She paused for a moment and was fine with it.

Today when I picked her up she starts chattering away about random important bits of her day. I was listening and it was a happy banter until  this came up My daughter (MD): Mommy they had Motts for snack today not the juice I know it is GF  the fruit snacks you need to check that in your book and see if it is gluten free.  Me: Did you have your banana chips?  MD: yeah I ate em all up.  Me:  Great! Did all of you wash your hands after you ate? MD:  We DIDN'T even wash them before! (I look at her in the rear view mirror hoping she is kidding. She is not. Me: So you used a wipe, germ X, or Purell.  She shakes her head no and then Says mama I think they were gluten free so you need to tell them. Me: baby you can not have what they are eating anymore. MD: Why mommy? Why not? (my heart breaking and years of teaching her she is the same as everyone else shattering as well) Me: Because you teacher says so. MD: Why Mama they didn't do this before why would she do this?  Me:  I don't know baby.

I am frustrated, angry, hurt, disappointed and want to do something.  I don't want to be rash in my decision and burn bridges where they need not be burned.  I want my child to be included and not ostracized though. I don't want her peers who go to school with each other for 10 yrs or more to look at her differently.  I don't want her to feel bad about yourself. I got her to stop saying I wish I was a gluten girl mommy and I don't want that back.

I see that while the teacher clearly made my daughter bring a snack for her safety she is not taking proper precautions to eliminate cross contamination. I think her explaining to me she would be put at a separate table with her GF playdough is what she thinks is the proper procedure even though I wrote what is and is not proper.  I had not gone to the school to ask them to provide GF lunches to be made available because they worked with me before and why push something when it is going so well.  Well now it is not going well and I want my child to be able to buy lunch if I am tired, sick, or just to have that experience in life.  They had bake sales all the time last year and will be setting up for ice cream and topping soon.  Well she should be able to enjoy that. Without it being cross contaminated.

I could save all the money we are spending and home school my child but there are always going to be these issues or people that pop up in life. She does not need a protective bubble she needs to learn how to function in the real world.   Like I told the teacher I am realistic there are times where I can not control if she gets gluten on her or in her. Then there are times that I choose to weigh if this life experience is worth putting up with the contamination fallout.

Thank you for reading through that here is my question. What would you do as a mother or parent if you were in my shoes? Would you try approaching the teacher again? Would you go to the principal? Would you get the laws to back you up?  Would you just look for another school?  I need some input from other people please.

Friday, August 10, 2012

hand outs to parents and teacher to help them understand what your child can have

While my child is going to the same school with 11 of her fellow students returning I wrote a letter or print out explaining more about what my child can and can not have. Asking them to give me advance notice for birthdays and what they will be bringing so I can try to make sure my child has the same.  I listed candy she could have so at holidays like valentines day or birthday parties  (pinatas or goody bags) so they would know in advance. I wrote in good places to shop in our local area. Just helpful info.

We have a new teacher and this is her first time dealing with gluten so I have made up a printout for her as well. I also bought the new Gluten free shopping guide to stay in her class room.

I am going to share them with you in case you want to copy them and write in your own details. I hope they help.

If you  go to file you can download in whatever for you might need.

If you  go to file you can download in whatever for you might need.
While this has been written for gluten allergy you can take this format and turn it into any allergy. I tried not to mention anything with nuts since there is also a child with a nut allergy in our class.
I hope that you find these helpful and if you find any changes that need to be made please leave a comment.  

Saturday, August 4, 2012

Always trust your mother's instinct

The OT testing results are in. They came in 4 days ago and it already feels like a month.  The results are clear that she needs work in so many areas.  She will have to go to Therapy on top of what we are already doing.  All the doctors she has have different theories about what she actually has wrong with her.

I have found a wonderful Psychiatrist for her that is ok with watching her. He is agrees that starting school and OT (hopefully ABA) will be huge changes in her life and that we should not throw pills at her now.  While he has discussed all of the different illnesses he thinks she might have at this moment due to testing, observation, and reactions to different stimuli he has also made it clear he has NOT diagnosed her with anything.   He believes in watching and making certain the child really has what he is labeling them with. That putting a label on is easy but taking a label off is hard.

I have worked for years to find people to listen to me, my pleas have fell on many a deaf ears.  I kept fighting and this is just the begging.  I just want every other parent out there to know that there is hope.  So many people will tell you they are fine, your friends might think your crazy, even your own spouse may start to think you are going over board. You might feel guilty when doctors tell you it's your fault or you are just making it up but it is worth it.

I have made a Plan for our life it is as follows

1) If you can not help her or bring anything positive the situation then you can not be apart of our team. I don't care who you are!

2) If you can not support us and the plan we are using then you can not be apart of our life.  That is Family, friends, therapists, teachers, anyone.

3) The plan will be flexible to change.  It is what The doctors and I think is best for her and if it needs to be adjusted to accommodate her better it will be. Deal with it!

4) If we do not have to medicate we won't but if and when that time comes it is MY decision.

5) The first medication is not always the right one and I do not need anyone making me feel bad about my child suffering so please keep your comments to yourself or feel free to leave.

6) I will not be obsessed about fining a diagnosis.

7) I will work on fixing what we can until she has one if she ever does.

8) I want her to be treated as normally as possible.  Yes she does need somethings that are different then other children but they do not have to be obvious and huge Lets see how far she can push herself and handle it on her own.  When we do have to step in I want to be as creative as possible and make them as small and hidden as possible.

There is so much more I will learn and want to add to this list but this is the plan I have come up with in the few days since I found out to get me by.

Friday, August 3, 2012

The most important item I buy for the new school year Is the not even on the supply list.

Every year I buy what the school requires, find a gluten free replacement, or buy her children latex gloves so she can do the activity with them. The most important item I buy is my  Grocery Shopping Guide 2012-2013 edition  I buy one for the teacher so she can check on snacks and little other products.   I also buy one for myself and now one for my Mother-in-law.  This way she can buy everyday items from the grocery store and know that she is not wasting her money. She knows they are gluten free and safe for us to eat. It saves a ton of time if I am trying something new, they are out of our regular brand, or we are at a friends house and they ask hey can the two of you have this?

If you buy one from there on checkout when they asked who referred you please give them my email address South3rnSass@gmail.com.