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FoxersArtist

Coping With Angry Feelings

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Now that my husband and I are really starting to get to know the little boy we knew was always in there somewhere, we have both been stumbling across some pretty strong feelings about the way we were treated as parents. From only a few days old, our little guy would act friendly around other people but was totally resistant to contact with us. It seems to us that maybe new people or different environments provided him with just enough stimulation to perk up and interact for short periods of time, but he was very, very different at home when no one was visiting. We would always get comments like "wow, you have the most amazingly well behaved little boy! Enjoy every second with him because it'll be gone before you know it." I always smiled an nodded, but inside I felt sick to my stomach as I screamed "Enjoy?!?! God please! Don't leave me alone in the same room with this little kid! He hates me and he wont stop screaming and throwing up all over me!"

There were a few people - family and close friends that we tried to reach out to for help or comfort because even though we were brand new parents, we had the distinct feeling that this was not what parenting was supposed to feel like. From these people we got comments such as "he's just being a little boy. They don't like to cuddle." "You haven't been parents long enough to know..." "Your just over worrying. He is healthy and normal. No baby will starve itself." "You just need to be more patient and understanding." As Gabe got older, the comments got worse. "Why can't you just accept him the way he is?" "Why are you rejecting him?" "There is nothing wrong with your son, you obviously don't know him." "You need to just love the heck out of him! Hold him and cuddle him until he gives in!" We even went to several therapists who insisted that we were good parents but maybe that Gabe was just a little independent. Some people, like one set of Gabes grandparents refused to believe that there was anything wrong to such a degree that his grandmother forced so much cuddling on him that it caused him to have serious and long lasting meltdowns after she left. She refused to back off, even when we explained that it hurt him, until we threatened to take him out of her life for good. His grandfather became so angry with us for believing that there was something even wrong with him that recently he busted into our house uninvited in a fit of rage and proceeded to tell us how we were messing him up by not being affectionate with him...how we were horrible parents. We tried desperately to explain our heartbreak over the situation and pled with him that we were trying in every way we knew how to be the very best parents for their grandson and that we really needed their support. Some of my close friends saw a problem but had no idea what to say, other than words of encouragement that we were doing the best job we could. Gabe's Drs were utterly clueless and could not help in any way.

When we finally found out what was wrong with Gabe and when I came to this forum and found other people who had children that behaved similarly to Gabe, I about died right there at the computer. For the very first time since being a parent, I didn't feel totally insane. I was relieved to know that the experience we had with Gabe is typical of infants and toddlers with celiac. But then the anger started. HOW COULD YOU! That's about all I can think toward Gabe's grandparents right now. His grandma has accepted that this disease can cause behavioral issues but I feel like she is skeptical at the idea that it was the cause of our total lack of bonding. Gabes grandpa is still in denial that there ever was anything wrong with him, so all celiac means to him is a diet change because of a little tummy ache. Even still, he is resistant to the idea that Gabe even has celiac. Gabe's new pediatrician was very supportive and he is a good doctor, but aside from him I am fuming at all of the other Drs and therapists who should have known better. The therapist who has been working with us to help the bonding process with Gabe is going to get an earful the next time I see her about how she needs to be more aware of diseases that can cause behavioral issues in toddlers. It's her job.

Overall I think that it's healthy for me to feel angry right now. I did the very best I knew how to do and went through the very hardest thing ever and was continually put down dispite my efforts. I need to be angry and to feel all the things I am feeling. I believe at some point I need to come to terms with the fact that no one understood because no one knew and that happens sometimes, and I need to fogive those who have hurt me. But not just yet. Right now I need to hug my husband and kiss my children and know that we are going to make it through and that's all that matters because WE are all that matters in the scheme of things. Grandma and grandpa and whoever else don't matter. They can think and feel and do whatever they want but as long as I have my family, I'm going to be ok.

Did anyone else go through this? How did you cope with feeling so hurt and alone? Is it better now that you know?

-Anna


Crohn's like GI symptoms, Multiple Sclerosis like Gluten Ataxia, Arthritis like joint pain, Myositis like muscle weakness, DTV like swelling, Chronic Fatigue, weight loss, hair loss, vision changes, anxiety & depression. I thought I was either dying or I had completely lost my mind!

Gluten Free since May 17, 2008

Started feeling like a new person after only 3 days gluten free and it is 100% worth LIFE!

-Anna

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I can understand your anger completely. Something similar happened to me with my youngest daughter, Susie. Susie is 16, and we finally proved that she is gluten intolerant through Enterolab last year in December.

I had known that she has a big problem with gluten as soon as I figured out my own gluten intolerance two and a half years ago. She was spaced out a lot of the time, couldn't remember what she had learned in school, was unable to wake up in the morning no matter how loud her alarm clock was, and couldn't ever get her homework done. For a year and a half she was failing EVERY ONE of her courses in high school.

Everybody, and I mean every single one of my family, which includes my husband and my four older children (28, 27, 25 and 22) and their spouses blamed me for Susie's problems, claiming I was a bad mother. And that she was being lazy because I was indulging her too much.

Not a single one of them believed that Susie would have stomach aches, and often didn't manage to get to school on time in the morning because of diarrhea hitting her just as she was about to walk out the door. And that many nights she would be vomiting and be too sick in the morning to go to school. And often she would leave school during school hours and came home because of being sick.

So, they pretty much forced me to give her up, and have her living with my second-oldest daughter a four and a half hour drive away at the beginning of this school term.

Well, after the Enterolab tests, she quit our high school in December, because the jerk vice principal who was responsible for her and ganged up on her with my husband, made life miserable for her. She started school again in January where she lives now. And she is getting excellent marks and has perfect attendance now.

NOBODY believes me that it is because she is now gluten-free and can actually think and isn't sick all the time any more! Of course it helps that she got a fresh start there, and none of the teachers know of the troubles she had. But my whole family will claim that she is doing so well now because she is getting disciplined 'properly' instead of being allowed to be lazy. And that her changed diet has absolutely nothing to do with it.

In short, I am an idiot and a terrible mother and don't know what I am talking about. It upsets me terribly, and I can't talk to anybody about it. I am very angry whenever I think about it. And Susie, even though she has made new friends and loves her little nieces, HATES living with her big sister, because she is quite controlling and treats her like a mother, not like a sister.

Okay, now I've had my little rant, I guess it had to come out.

But because of all that, I completely understand where you are coming from.

You are a GREAT mother, no matter what anybody says. And I am so glad for you and your husband that Gabe is now starting to be the boy he was meant to be from the beginning, and that he is able to show you how much he loves you now.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I've gone through this so many times with doctors on so many issues besides for celiac, I can empathize! In fact, I feel anger on your behalf at how you've been treated.

Sometimes, it seems that nobody ever listens to parents. Not doctors, not in-laws, not friends, not teachers.

I've been given seriously wrong information so many times, I've lost count. So has my mother.

Let's see...

She was told when I was a baby that I had a disabling condition involving disintegrating hip joints, and that I needed to be institutionalized, as I woudl never be able to stand and walk. In reality, I simply had hip displasia. I'm fine, and used to run 5 miles when I only had one child (now I have three).

She was told I was "slow" because I couldn't give satisfactory answers at an eye exam when I was 4. They didn't listen to her when she told them I was already reading books. As it turned out, I couldn't see the eye chart, let alone the lines on it they wanted me to read.

I was told that my son's yellow skin at 7 weeks was because of "breastmilk jaundice" (at 7 weeks?). Then the ped suggested that it was due to his Asian heritage. In reality, he had a serious heart defect, and was in congestive heart failure, and his liver was enlarged.

When he was 2 months old, and screamed like I have never heard before or since FOR 3 HOURS straight (and he had hardly the strength to even cry before this, what with the heart defect and weighing 4 1/2 pounds), I was told that he was a little fussy and I should give him Tylenol. In reality, he was having a serious reaction to his vaccines (which we shouldn't have let them give him, but we didn't know any better at the time).

I could go on and on, but don't want to highjack your thread! Suffice it to say that I have lost faith in the medical system in general, which is very sad, as I know that they do SOME good.

I just want you to know you have every right to be furious--and you are not alone. It's unfortunate that so many of us have had such similar experiences. but at least we are here to support you!

I would suggest printing out whatever official-looking studies you can find when you give the baby-bonding-"expert" that well-deserved earful. She's not likely to listen to you without such "proof," since she was ignorant about it in the first place. Look up Lisa Lewis (Special Diets for Special Kids) and Karyn Seroussi (Unraveling the Mysteries of Autism). I don't mean to imply that your little guy is autistic--just that there is GREAT info in those books, and most of it centers on the neuro/bonding issues caused by gluten/casein intolerances. You can throw those books at your so-called "expert!"

You can also have the grandparents read these books. Or maybe show them this thread, and let them know that there are others out there who have been through this! And explain that they (the grandparents) and others of their generation would not likely have ever heard of this sort of thing, let alone had to deal with it, as the food intolerances are much more prevalent now than they were in their day. And maybe let them know just how many vaccines babies get these days--I bet they have NO IDEA. (It's upwards of 30 in the first 18 months, if you follow the "recommended schedule.")

Hang in there, we're all here for you!

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Oh man - can I relate! From family to doctors! Luckily I am now at a place where we have an excellent bunch of specialists and doctors who listen to me! It was a long journey though. With the Aspergers - I felt joy at finally understanding my daughter's world when they diagnosed her. My sister was judgemental and said : "Who told you THAT?"

Celiac - during the time that led up to the diagnosis - extended family was questioning my trips to the doctor and I should realize she may just be "one of those kids that complains about every ache and pain". So I stopped telling them and just advised them of the diagnosis when it was confirmed. In my family - unless a doctor says the kid really does have problem....then I am the mommy who worries too much and can't just relax and enjoy life.

Even with the Kawasaki and cardiologist confirming the coronary arteries were dilated - my sister (the nurse :blink: ) proclaimed: "How do they know they weren't that size to begin with?" umm okay now she is questioning the cardiologist :angry:

The only diagnosis everyone accepted right away was: the diabetes in my son. ... of course some had to make sure I knew that he "got it from me" (umm okay that's a helpful comment :blink: )..

The gluten free diet has helped my daughter tremendously! Huge inprovment in energy, attention span, ability to cope, concentration....and of course her overall health .

Just wanted to say that you are not alone and in fact - you are in the majority here! Trust your mommy instincts and ignore those who try to undermine your intuition and observations.

When my daughter was little, I too had someone say "Lots of kids don't like hugs" (my daughter did not like us to hug her). So I asked them: But does your kid recoil when touched? Does your kid prefer to play alone at an age when most kids love other kids around? Is your kid sick more often than not?

So I was branded defensive :o and in need of "help"... I just ignored them and decided that I would limit my interaction with family members who were not helpful and prefered to judge me rather than practice empathy.

Welcome to the world of glulten free and many other moms who can relate!


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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