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?
Even though Elenore is 18 months, she is still just barely eating actual meals, still mostly on her formula. So I am usually able to bring with me what little snacks she can and might eat. But even though she may not make a meal of much food, she is still very interested in it and trying everything, so we still have problems. I grieve every time at any gathering when she wants to join in eating whatever we are eating and I have to tell her no, or snatch something away from her that she has somehow gotten hold of. I hate the feeling of watching her like a hawk to make sure she doesn't eat anything bad for her, or having to tell kids "thank you, but please don't share with Elenore" ... But I also feel that I have to be as willing as I am able to join in as many social things as I can and make that effort or constant watching because she needs that interaction so much. It is really hard, and I still have no good solutions, but I just have to take each day as it comes, because if I begin to stress or grieve about future difficulties, it is too much.
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