Help

[grovermummyC4]

I am at the end of my rope, I am a single mother of three, Emily 5, Erika 3 and Donvoan 20 months all three as well as myself have Celiac Disease. I have had to remove them from all forms of child care due to them getting sick from people who don't care to learn about there needs.

No daycare provider will take them on as they will not go put the work in needed to make sure my kids are not feed gluten. My two babysitters that were willing to take them are not paying attention to the CC factors. I know its not easy but I need a break! the EX has been banned for being alone with the kids so he is no help and to make it worse I am looking at taking my daughter out of school as the lunch room is not supervised as it should be and she is getting CC and glutened every day.

I have been told by every place of help that they are ether to disabled or not disabled enough! I can't afford to join the Celiac association here so I have not even had a chance to meet others in my area that might be of some help. The cost of trying to stay at home and gluten-free food has got me worried how im going to survive. Im trying to keep myself from getting depressed but I feel like giving up but to do that means my kids suffer!

if you have any ideas please let me know. I live in Alberta Canada if that helps. thank you

Pam

[missquarejane]

I am at the end of my rope, I am a single mother of three, Emily 5, Erika 3 and Donvoan 20 months all three as well as myself have Celiac Disease. I have had to remove them from all forms of child care due to them getting sick from people who don't care to learn about there needs.

No daycare provider will take them on as they will not go put the work in needed to make sure my kids are not feed gluten. My two babysitters that were willing to take them are not paying attention to the CC factors. I know its not easy but I need a break! the EX has been banned for being alone with the kids so he is no help and to make it worse I am looking at taking my daughter out of school as the lunch room is not supervised as it should be and she is getting CC and glutened every day.

I have been told by every place of help that they are ether to disabled or not disabled enough! I can't afford to join the Celiac association here so I have not even had a chance to meet others in my area that might be of some help. The cost of trying to stay at home and gluten-free food has got me worried how im going to survive. Im trying to keep myself from getting depressed but I feel like giving up but to do that means my kids suffer!

if you have any ideas please let me know. I live in Alberta Canada if that helps. thank you

Pam

oh that is so horrible and sad! i know what an armfull it can be and how little people will take you seriously sometimes. i was doing daycare in my home for my son and another little fellow and i couldn't get the other mother to understand that i could NOT have her bringing wheat into my home either. so hard to get them to GET it.

here's a thought. bear with me here... initially it would mean MORE work. how about you run an ad in a local free paper like craigslist and see if there are any other celiac kids who need daycare that YOU could provide in your home. then you could make money while staying at home with your kids. that might leave you some left over funds to get out once in awhile. you definitely need some support group of sorts near home. friends, family, celiac support groups... if they charge too much, contact them and explain your situation. they may be willing to bend the rules for a mommy who needs it.

hugs and positive thoughts to you and the kidlets.

[gfgypsyqueen]

I hear ya! School and child care can be so hard especially when you feel completely alone.

In the US you can declare the kids a 504. It is some kind of a disability label used in the public school system. I have looked into this for my elementary aged child who has a severe nut allergy when the school was not working with me. Allergies and Celiacs are a disability under this 504 care plan. It basically has you and the principal, nurse, and teacher come to an agreement about what accomodations must be provided for your child. You may be required to provide all food and drink, but they will provide an allergy table in the lunch room. Find a few friends who will eat properly or eat gluten-free to eat with your child. Holiday parties in the school/classroom are covered. Hand washing and surface sanitizing are covered. The plan also covers field trips, classroom activities, etc. Basically make a list of the problems and start a negotiaition with the principal. Your daughter should not be segregated from the other kids, nor should she have to be removed from school to be kept safe.

Daycare is harder. My youngest is gluten-free & CF & shellfish allergy. Plus she can't have any nuts yet due to sisters allergy. So, daycares do not have to follow the 504 plan.

Here is what I do for schools. My oldest was in daycare with the nut allergy. My youngest is currently in daycare.

1. Talk with the teachers. Try to make it as easy as possible for the teachers. Also, keep in mind that the teacher will have to become the label reader/food safety point of contact for your child. It's good to develop a friendship. Most all teachers want to help, it just sounds overwhelming at first. So, try hard not to terrify the teacher, or overwhelm them. They have 15 or more other kids to worry about at all times too.

2. Provide a safe snack box. Include a safe craft box if needed. But dough is the only real problem item I have found for crafts. And you can make or buy gluten-free dough. It may be worth buying or making dough for the whole class to use. Keeps all surfaces clean.

3. Make a contact sheet for your child to be kept in the classroom. I have problems with substitute teachers not knowing enough so one sheet is in the lesson planner. Put a current picture of your child on the form. Include your contact info - home, cell, work, etc. They must be able to find you. Include a very brief description of Celiacs (1 or 2 sentences). Include what a reaction is like for your child and special accomodations she might need. Extra bathroom passes. Spaced out brain fog issues, etc. Explain recovery time, etc. Include a list of ingredients to avoid all of the crazy places gluten hides. Include some always safe items like whole uncut fruit and water, in case of emergency. Basically give them enough info so that they understand, but do not over whelm. Keep it to one page. Laminate the paper. Give one to teacher, one to lunch room, one for substitute folder, etc.

4. Discuss holiday parties early. Help the teacher plan a naturally gluten-free party. Be present for the party if possible. Offer to bake the cupcakes or brownies or cookies. Ensdure that your child has a safe candy bag for candy holidays. etc.

5. Most importantly, talk to the teachers often stop in the classroom if you can. Offer things to make it easeir for them. You may have to provide all food and drink for your kids, but that will help th eteacher keep them safe.

I know finances are a nightmare especially as a single mom. Maybe your church can help?

You may find that some of the teachers will become your good friends and a bigger help than you imagined.

Best of luck

[gfpaperdoll]

PM me the name of your local celaic support group. I will take care of your membership. I cannot believe that they even charge !!!! In Houston we have a nominal $20.00 yearly fee to cover the cost of paper & postage...

[mairin]

Pam

What city in Alberta are you? Our daycare in Calgary is very knowledgeable about celiac's, but I do know that Calgary has few affordable childcare options and the waiting lists can be over 2 years. I'm sure you could speak with the Calgary Celiac Association about joining, or the Edmonton one, whichever is closest. They have meetings for parents -- unfortunately I've only been able to attend one, and it was very helpful. They also have get-togethers for kids. Is childcare in your own house an option?

I would speak with your school principal about the school lunch program and the lack of supervision. I believe that we do not have anything similar to the "disability" program for kids in schools like the States (can't remeber what it is called). It is a matter of teachers, principals, and other parents believing that yes celiac IS a big deal and should be taken as seriously as nut allergies. Send all the parents a letter about celiac's. I didn't have to do that as my daughter is 9 and is quite the self-advocate -- but I did let the teacher know, letter on file with the school and have informally chatted with her friends' parents. I always send food with her to a party to share with others so they see that gluten-free food is GREAT. Getting other parents on your side and voicing their concerns really helps.

I hope something works out for you.