I Want to Quit!

I received a call from school today.  Owen's teacher noticed a rash on his face and tummy.  The nurse called to see if I wanted her to administer Benadryl.  I explained that Owen has had the rash for four days now.  It had appeared better this morning and so I wasn't as worried, hence why I sent him to school.

When Owen returned home the rash had definitely worsened.  After nap time it had spread to his arms and legs. Originally I thought perhaps it was Roseola or maybe Fifth Disease.  Owen had been sick.  I was wrong.  It turns out, Owen had broken out in hives.  He was having an allergic reaction to the antibiotics the doctor was giving him.  This is what I learned at 4:30 PM today at his doctor's appointment.

ANOTHER ALLERGY.

I took Baby L to his Communications Disorders Unit appointment on February 28th.  As I explained some of Baby L's symptoms to the CDU Specialist, she proclaims, "It sounds like he may have food allergies."  Just those two words, "food allergies" seem to haunt me EVERYWHERE I go, with EVERY CHILD I care for, whether they are my own biological children or foster/adoptive children.  How does that happen?

Lydia broke out in hives during her last antibiotic treatment as well, not because of the antibiotic, but because it was flavored with orange, one of her food allergies.  When I smelled the prescription I knew it would be trouble.  I called the pharmacy and asked for the ingredients.  They were unable to tell me the ingredients for the flavoring, other than to say it was orange flavoring.  Of course you can't take back antibiotics and get new ones.  So I took the chance and gave them to her.  Thankfully it was only a minor reaction, because the orange content was so small, but still...  ENOUGH!

Baby L started steroid nebulizer treatments two or three months ago.  I don't remember specifically.  The day he took his first treatment was the same day I gave him Tylenol for the first time.  About 4 hours after the first dose of Tylenol, I went to changed him and realized he had broken out in hives that were starting to blister.  They were all over his front and back, neck and spreading to his head.  Immediately I called the doctor, administered Benadryl and waited.  I took pictures of his back and tummy, just so I could believe what I was seeing.

Fast forward a couple of months and I decided to administer Tylenol a second time to see if in fact that was what caused the reaction.  Sure enough, as I stripped him at his doctor's appointment that very afternoon, only about an hour after the dose, he was covered in hives.

Benadryl is a staple in our home.  Just yesterday Adam received a dose.  He had somehow gotten a hold of Owen's Life cereal.  Thankfully there was no milk in it, or else we would have definitely been in far more trouble, but Adam is allergic to oats, which is one of the first ingredients.  Adam doesn't understand his food allergies.  He's two years old.  As I immediately move the cereal away from him, he exclaims,

"Mommy!  Yummy Life!"  Trying to stay calm I hold him and explain that life is "danger" as we put it in our home.  I tell him that it makes him sick.  This is on my way to the medicine cabinet to grab the Benadryl.  Adam sees is and shouts,

"YAY!  PINK MEDICINE!"

There is something wrong with this picture.  Adam LOVES Benadryl.  I'm sure it makes him feel great, but I worry that he likes it so much there may come a time where he does really stupid things just to get some.

Just a week before, Adam had another dose of Benadryl because he got a hold of a sticker that was sent home on one of Owen's papers from preschool.  Seriously, does anyone else live like this?

I am exhausted.  I want to quit.  One can't quit being a Mom of a child with food allergies, or any other special dietary need or special medical need, but sometimes, on days like today, I really wish I could.  What I would give to just take it all away.  I forget what it's like to live a life free of food, medicine, and an adhesive allergy.

The highlight of my day was finding out that the special needs preschool in our town is officially accepting Adam on a trial basis of one hour, two days a week next fall.  They won't accept him as a full time student or as a part time student.  It's too dangerous for him and his allergies.  The school would have to rearrange a whole room for Adam and eliminate many of the activities they do throughout the day.  Teachers feel it's not fair to the other children, to limit them so much.

What about Adam?  He doesn't even get a choice in what's fair for him.  His life isn't fair.  It is so sad to me that Adam's trial to preschool is the highlight of the day.  I am grateful, don't get me wrong.  We were pretty sure we would have to home school him, until our pediatrician, the medical director of the special needs school, arranged a meeting with the head administrator, the nurse, him, and myself to advocate on Adam's behalf.

The children's allergies are overwhelming at times, especially as more and more are discovered.  I feel like a crazy woman to others, even to the nurses at the doctor's office every time I call about another reaction from one of the kids.  They know I'm telling the truth, it's just that it's so unbelievable.  One of the nurses said to me last week,

"I can understand your own children, but the younger two aren't even yours!  I mean, come on!"

Anyways, I needed to vent and shed a few tears.  I truly am in mourning over Owen's allergic reaction today. Part of me feels stupid for not knowing what it was, but then another part of me is in so much denial about there being more allergies to diagnose, that until our doctors says it's an allergy, I won't believe it.  Hopefully I'm not the only one that's felt this way, perhaps the allergies or diagnoses are different, but I mean the wanting to quit part.

Please share your story, if you have one!

When Life Throws You Lemons...

When one thinks of a tradition, most often it is directly related to food.  When one thinks of a celebration, the food takes center stage.  When we attend a meeting, training, or other business event how often is there food there?  How often does the food help us feel more excited about the dreaded event?

What would happen if you couldn't eat the food that's part of the tradition, celebration, meeting, training, or other business event?

When one thinks of dating, social activities, and friendly gatherings, where do these events take place? What do people do for fun?  Most people go to restaurants, movie theaters, and parties where food again takes center stage.

What would happen if you couldn't eat the food that's part of dating, social activities, and friendly gatherings?

Life changes for the individual and their family, when one is diagnosed with a special dietary need, especially a life threatening one.

I remember Adam was about 18 months old.  Our family of four had been shopping for the afternoon and it was around dinner time.  My husband suggested that we go out to eat.  Almost immediately after he suggested the idea he realized that we couldn't.  Finding a place that would serve food for Adam was almost impossible.  To this day we have only found two places, KFC and Unos.  It is rare that we go to these places.  Most often we pack food from home for all excursions,visits, and vacations.

It's easier to accommodate special dietary needs in babies.  Once they become toddlers it becomes a bit more difficult.  Naturally they see food and want to eat it. They have no knowledge of their special needs.  We as parents become life guards.  Everywhere we go we must keep them safe.

Going out is possible, but must be well planned.  I can remember the first birthday party we went to when Adam was little.  Thankfully the host was my best friend and she was more than supportive as I asked a million questions about the event, food being served, where the food would be located, how many people were coming, and so forth.  The event was a success.

However, there have been many times where we have had to opt out of special events with extended family and friends because we couldn't keep Adam safe.  On many of those occasions there were people who didn't understand and took offense.  At times we've been ridiculed because of this.

And then there are those moments that almost tear your heart into pieces as you grieve for your child's loss.  Like the first time Owen wasn't invited to a friend's birthday party because of his food allergies.  I cried.

So, how do you prepare yourself for such drastic, life-altering changes and continue to have some sort of social life? Here are a few thoughts:

First, it might be helpful to take a step back and appreciate the enormity and complexity of the challenges that await you and your child, for a long time into the future. Any attempts you make at trying to attend a party or day trip in which you are doing your best to make things as safe as possible, are great successes and you should feel great about that! In counseling, this is called normalizing. Counselors use this tool to help their clients who are getting overwhelmed, either by the size and scope of a challenge, or burned out be being too critical of themselves. Raising a kid with special dietary needs is a tough job, and you are doing the best you can, so that should be acknowledged and celebrated! For example, we had a great experience taking our three kids (each with multiple food allergies) on a week's vacation to the beach. Even our faithful pediatrician shed some doubt on whether this was even possible. But, with sufficient planning and preparations, and great support from willing family members who agreed to "follow the rules" about what was allowed (or not) around the kids, we pulled it off. Necessity is the mother of invention, and you have probably come up with many great ideas for having fun with your kids in safe environments as well. This is not easy, and your child will certainly appreciate your efforts as they grow up.

Second, some perspective taking, beyond the normalizing step, might be helpful, to allow you to understand where people might be coming from if they seem insensitive or uncaring about your child's situation. Remember that someone who doesn't live with a major dietary challenge goes on with life not ever really thinking about what they can or can't safely eat, except maybe when you or your child are around. (not to mention that, most likely, if you don't suffer from a special dietary need yourself, you probably didn't think about them either before you had a child with one). Give people the benefit of the doubt, and try to consider their perspective before declaring open war on your Aunt Matilda for serving up a plate of cookies at her last gathering, right under the nose of your lactose or wheat intolerant child.



Questions:

How has the adjustment to life with special dietary needs been for you? Do you feel supported or unsupported by others? What has helped you to overcome those feelings of rejection or hurt?

Have you had any success in planning or participating in an event to make it accessible to your child with special dietary needs? What helped the most in getting people "on board" with making the needed changes?

Grieving the Diagnosis

Everyone grieves at one time or another in their life time. Whether it be over the loss of a loved one, an illness, relationship challenges, or the loss of a prized possession. Most often people experience the same emotions. One can sympathize with another because most likely they've experienced the same or very similar loss.

There are five steps in the grieving process according to Dr. Elizabeth Kubler Ross.

1. Denial and Isolation

2. Anger

3.Bargaining

4. Depression

5. Acceptance

The steps may not go in any specific order, but the ultimate resolution is acceptance of the loss.

When a loved one is diagnosed with a special dietary need, immediate family members grieve. But unlike the death of a loved one, that others have experienced, families with children of special dietary needs are often left to grieve by themselves. Others can not sympathize or relate (unless they too have the specific dietary need). Often times the lack of ability by others to sympathize or even empathize results in misunderstanding, lack of support, and often times frustration.

This can be extremely difficult for the family with a child who has special dietary needs. Often times they lose friends. They are viewed as "different" or "paranoid" or sometimes even "crazy." This particular kind of grief has been called disenfranchised grief, since there typically aren't any culturally-accepted practices for grieving this kind of loss. (When was the last time you went to a wake for wheat products for someone diagnosed with Celiac disease? Did you get a Hallmark card expressing condolences for your child's lactose intolerance? Didn't think so.)

So, knowing that other people might not be able to relate to, or even be willing to relate to, your grief over your child's diagnosis, the question becomes, how do you move through the grief cycle and arrive towards acceptance?

A suggested first step would be to identify where you are in the process. Allowing yourself to be in touch with whatever you might be feeling (and it might be many different feelings), is vital to the process of healing and arriving at some kind of peace about the diagnosis. It is also not easy, since it requires honest self-reflection and the feelings might not be exactly pleasant to experience. This sort of honest self-assessment is needed in order to begin moving through the stages, since failing to do this could result in being "stuck" in one of the stages and the grief will continue to be an overwhelming presence in your life for a long time.

Kubler-Ross believed that going through the stages in order (as they are listed above) was important, since the patients she studied seemed to do best when they followed that order. Other researchers have noted that not only are there perhaps fewer or different stages altogether, but that movement through each stage in a particular order is not necessary or even optimal. Furthermore, some research has suggested that is is quite normal to revisit one or more of the stages once or even several times each before arriving at some sort of acceptance, or to completely skip over some stages entirely. The key is doing whatever you need to do to move forward (slowly and unsteadily, most often), until the loss is manageable. (A great article in Time Magazine dated January 29, 2011 provides a good overview of some of the challenges to the Kubler-Ross model).

Despite the criticisms, however, the Kubler-Ross stages are useful for our discussion here, so a brief overview of each stage and how it might be experienced is provided below, along with ideas for how to move through each stage successfully.

1. Denial- The most well-known and obvious stage, and one that has some real potential for problems now and in the future if it is not dealt with somehow. With food allergies, we have found that this happens most when there hasn't been an "incident" with the allergen in a while, and the parents start to question how severe the reaction really was, or if it was real at all, or continued attempts to think that "maybe my child will grow out of it." The dangers here are obvious, so the key to dealing with this stage is to confront the doubt and uncertainty. This tip from the Mayo Clinic website sums it up well:

• Honestly ask yourself what you fear.
• Think about the potential negative consequences of not taking action.
• Allow yourself to express your fears and emotions.
• Try to identify irrational beliefs about your situation.
• Journal about your experience.
• Open up to a trusted confidante.
• Find a support group.

2. Anger- This one again is fairly self-explanatory, but also has a lot of potential for causing problems in your life if left unaddressed. This one can come quickly after getting through the denial, and with dietary needs, this can take the form of anger against God, or nature, (the "why me?" response), anger against people who are careless around your child with food, or unwilling to take it seriously, or the declining rate of invitations to birthday parties, holiday celebrations, family gatherings, etc. (lots of dairy and wheat products involved in those, aren't there?) There are many, many approaches to dealing with anger in general, but the main idea here is to acknowledge that it is okay to feel angry about the diagnosis, about the situations that arise, and people's attitude, but to not get stuck in that anger and take it out on others, etc. This one can be brief and healthy, if needed.

3. Bargaining- This one may or may not apply as often as the others, and is relatively short-lived, since it almost always leads the person to stage 4 (depression). The idea here is that you try to strike a deal with God or whomever or whatever force for good in the universe that you believe is "out there", offering to do good deeds, or quit smoking, or appreciate the small things, etc. in exchange for a remission of your child's special dietary issues. The quickest way through this stage is to realize that, well, it probably won't work, and so, you give up the pleading and continue on to...

4. Depression- This can take two main forms. One, depression about the specific things that you or your child lost upon arrival of the special dietary need. So, for someone with a severe peanut allergy, it's good-bye PB&Js, forever. The second form takes hold as the person with the special dietary need grows up and the implications and consequences of that need play out day to day, over the lifespan of the person. This stage is processed in a similar way to the anger stage, in that the key is to be aware of and in touch with the feelings of sadness and deal with them as they surface. This is not to be confused with clinical depression, which is the result of neurochemical interactions in the brain. However, if left to linger long enough, unresolved feelings of depression about your loss can lead to a depressive episode, so if this happens, it may be necessary to seek out professional help though a doctor of mental health worker.

5. Acceptance- peace, resolution, recovery, reconciliation- it has many different names, and when "it" finally arrives, the feelings associated with it are just as varied. As noted above, some form of acceptance might be experienced early on in the course of the special dietary need, but something could happen to you or your child along the way (loss of relationships, close calls with allergens, feeling different or isolated over time, the accumulation of related health issues, the high price of allergy-friendly living, etc.) that could trigger the onset or recurrence of one of the first four stages. The key again is openness about the feelings, communicating and a desire to move forward towards acceptance. A sense of humor doesn't hurt either ;)

Questions to consider and discuss:

So, what has your experience been with these stages? Have you been through any or all of them? Have you felt stuck on any? What have you done to help move yourself through them?

As mentioned earlier, this is a sort of disenfranchised grief, and you might have to go it alone, with little support from family, friends, schools, etc. So what has your experience been in those kinds of situations? How have you increased awareness or sensitivity towards your child's needs?

Remember, some folks have found that not everyone goes through (or even needs to go through) all five of the "classic" stages of grief, and there is no set pattern for moving through them that is perfect for everyone, so your experience with the grief process may be entirely different than anyone else's...and that is OK!