Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

So Frustrated!


ptkds

Recommended Posts

ptkds Community Regular

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!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kbtoyssni Contributor

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?

dandelionmom Enthusiast

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.

gfpaperdoll Rookie

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...

okgrace Apprentice

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.

Momof3boys Newbie

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.

ShayBraMom Apprentice

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

    2. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    3. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

    4. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

    5. - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,692
    • Most Online (within 30 mins)
      7,748

    Ali Zaib
    Newest Member
    Ali Zaib
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.