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ptkds

So Frustrated!

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My dd#3 is about to turn 3. She is in speech therapy through ECI (Early Childhood Intervention). When she turns 3, she has to start in the public school system to continue speech therapy. They want me to put her into head start in the fall so she can be around other kids her age because that would help her the most. So I finally got to talk to the Head Start director today. She told me that THEY would have to supply her lunches and I can't send her lunch with her :angry: She said they would "accomadate" her dietary restrictions. I asked her if they would buy new pots, pans, utensils, ect., and she couldn't really answer me. Then I told her she can't play with play dough, and she said that they always play with it, but they would "try" to avoid it around her :unsure: . Then she pointed out that kids often reach over to others food trays, which means they wouldn't even really pay attention to her during meal times to make sure she doesn't share! So, basically, Head Start can't take her. That director sent me to the Elem. school to look into PPCD for her, but that program is for more challenged kids with bigger medical problems. My dd only has a mild speech delay. Then I went to a day care that has a preschool run by the school system. I hate the place. When I walked in, NO ONE came out to check out who came in. I had to go into a classroom to get someone's attention. She finally got someone else to come out, then I heard her yelling at the kids (who were less than 2 yrs old) to sit down. While I was talking to the lady about enrolling my dd, another group of kids and their teacher walked in, and she was yelling at the kids as well. When she was gone, I told the other lady behind the counter that I do not want my child talked to in that way. She told me that lady woulnd't be my dd's teacher. I wasn't too comforted. But she can bring her own lunch and they are familiar with food allergies.

I just don't know what else to do! My dd needs to be in a classroom environment, or at least around other kids her age on a regular basis. I can't afford a private school, plus she wouldn't get time with a speech therapist. Then it might be harder to get her into Pre-K when she is 4. I don't feel comfortable with the day care/preschool I went to today. Anyone have any advice? I have to get her into something, but she will only be 3, she has a very limited vocabulary, and she doesn't understand that she can't eat certain foods.

HELP!!


ptkds

Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.

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Could you get a 504 plan for HeadStart? I think it is completely unreasonable that you can't send food with your daughter - it's obviously the safest option. No way will they be able to cook for her. Not that you want to send her there since they're only going to "try" to get it right. Would a 504 or IEP allow her to just use the speech therapy part and not attend the rest of the day? Not ideal, but it might work.

Seems like your best option is the elementary school even though she won't be as medically challenged as the other kids. Would the other kids' health problems affect the quality of your daughter's education? If not, I'd follow up with that one.

Are there other activities she could do to be around other kids? Sports or play groups or something?


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Head Start is a great program but they aren't very helpful when it comes to the kinds of special situations our kids need. Look into some other preschools (ours is only a couple of mornings a week so there's no lunch to worry about and they're really good about managing her snack most of the time and they were fine with me sending in gluten-free playdoh for the whole class). Or maybe consider finding other group learning opportunities that are naturally gluten-free for her like story time at the library, dance classes, music classes, etc.

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where is your child during the day now? Do you work? How long has she been gluten-free? Is she also dairy and soy free?

There are computer programs that interact with children & the child talks back etc & you can monitor that if you are home with her during the day. There are other things that you can do to help her. I would also get her a tape recorder. & I would video her & let her watch them & then practice the words & video her again...

Are you reading out loud to her everyday?

My granddaughter that is now 10 had a speech problem & had to get special classes but it was during the regular school day... (she has two DQ1 genes...) she is fine now...

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I can understand your frustration with the preschool/ daycare situation. I have had to cut way back on my hours as I am unable to find suitable childcare. I am an OT and I go into a Headstart once a week during lunch time to help a boy with self feeding. I know there is a child in there who has food that is for her only and I think they are good about making sure she doesn't get an other food. I would be very concerned about cc. The kitchen staff aside, at the heaadstart I go to all of the children share a playground and the equipment on it. It would be difficult to make sure the whole headstart washed their hands well after eating or using play dough, which is everywhere.

One good thing is Headstart tends to be proactive and accustomed to working with kids with special needs.

Playgroups or playdates or a preschool for children with special needs may be better solutions. My daughter attends a school for children with some type of developmental delay. THey are used to making accomodations for children although it is still tricky as I am just realizing how careful we have to be.

Hope you find something soon that you feel comfortable with.

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I am a speech therapist in an elementary school. But I am also a mother of a 5 year old with OT and Celiac's. So at his IEP I am having a nutritionist, nurse and all of the other participants as well. I would contact the speech therapist or diagnostician who did the initial testing and as part of the IEP I would write in that your child can not have gluten and needs special permission to bring in own lunch. I would be sure to mention that they can't with hold a "Free and appropriate education" or "FAPE" from your child because of a disease. I would mention that that would be against federal law. I would push for your child's health and make them make the accomodations. Go to through the special education route and they can tell Headstart what to do! I would not let them push you around! You just have to educate yourself with the law and then let them know you are aware of your child's rights. I hope this helps! Tell them you would be glad to have a doctor's note if they wish.

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Exactly! I'm totally with her! You have a parental right and that includes that your child gets a good education in a safe enviroment. It is rediciulus that you cannot provide your own meals for her! My son is speechdelayed as well, he has an IEP and he 's been in a special Preschoolprogramm 4 times a week for 3 hours since he was almost 3. thsi summer he will graduate into Kindergarde, again with an new IEP. Special needs kids do have special needs and if a school offers programs for those kids they have to accomodate. Nobody aks them to accomodate her diet but to let you send your own stuff and them keep an eye on it! The 8 yr. old of my best friend, he's deadly allergic to even traces of peanuts. He brings his own foods too and on tuesday's where they used to have peanutbutter-sandwiches for all the kids as lunches, he sat separate and so on. Hear, hear, this year they do not have Peanutbuttersandwiches on their plan naymore...........

As Momof3boys said, dopn't let them push you around. they HAVE to accomodate your daughter in one or the other way by federal law. Get yourself very well educated, get printouts aobut the law, get a not from the Doctor and so on. Fight for your daughters right! since your daughter is pseechdelayed AND has these dietary restricitions she has the right to an IEP, basically a contract where you guys with the teachers, schoolnurse and so on put down the goals for your daughter, as qwell as the restrictions she has, and that incldues food! If they don'

t keep their part of the contract, and she gets repeadetly sick because they don't watch her, they get in big trouble if you blow the wistle!

Talk to ECI (my son used to be with them as well startting 15 month old) and how to psuh for an IEP. Them are usually setting up the meetings and everything that leads up to one. also aks them if they have anything talking about parentlal, law, if they know any websites where you can get yourself smart and credible info! Good luck!

I am a speech therapist in an elementary school. But I am also a mother of a 5 year old with OT and Celiac's. So at his IEP I am having a nutritionist, nurse and all of the other participants as well. I would contact the speech therapist or diagnostician who did the initial testing and as part of the IEP I would write in that your child can not have gluten and needs special permission to bring in own lunch. I would be sure to mention that they can't with hold a "Free and appropriate education" or "FAPE" from your child because of a disease. I would mention that that would be against federal law. I would push for your child's health and make them make the accomodations. Go to through the special education route and they can tell Headstart what to do! I would not let them push you around! You just have to educate yourself with the law and then let them know you are aware of your child's rights. I hope this helps! Tell them you would be glad to have a doctor's note if they wish.

Susi with Shayden and Brandy

Shayden, pos. with DQ 2, pos. for Glutensensitivity with Tissuetransglutaminase Stool TgA 45 Units

Brandy, pos. with DQ2 + DQ8, DX Celiac Nov.07, gluten-free since Nov. 1st 07, Tissuetransglutaminase Stool TgA 63 Units

Me: Gastroscopy negative f. Celiac, IBS, Oesophagitis, Hiatus-Hernia

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