Discovering food allergies and sleep apnea in my son when he was younger gave me a crash course in motherhood. I quickly learned how to manage both and be my child’s best advocate. Here are five key ways you can be your child’s best advocate too:
1. Trust Your Gut.
Someone once gave me this piece of advice and it is by far the best tip I could offer to any first-time parent: Trust your instincts.
When my first child was a baby (four years ago now), he often woke up every 45 minutes–literally. Nursing, rocking, walking, and lots of other tricks would get him back to sleep at night, but he often woke up within the hour.
Needless to say, my husband and I were exhausted, sad, frustrated, confused, and feeling pretty helpless. We went through many emotions and a few pediatricians. They undoubtedly thought I was just another tired mom who had to be exaggerating about how awful my baby’s sleeping was. Or, they thought it was behavioral and I needed to let him “cry it out” or use one of the many sleep training techniques.
I remember leaving one appointment in tears, vowing to find someone who would listen to, believe, and help us.
2. Get Help, Support.
It wasn’t until our son was almost two years old that my husband and I sought help on our own. We just knew that what we were going through was not normal. Our son didn’t snore, which is always the question the pediatricians ask. But his pauses in breathing were very long.
They were so long that they set off our movement and sound monitor, which is a crib alarm that goes off when a baby stops moving or breathing for too many seconds. I had purchased it because I just had a nagging feeling that we needed it.
To this day, I swear that monitor woke our son twice and may have saved his life.
Sure enough, after seeking the aid of a sleep specialist, our son underwent a sleep study and was found to have obstructive sleep apnea. An ear, nose and throat specialist soon thereafter removed his adenoids. They were large, to say the least.
So he was waking every hour to get a breath, to get more oxygen. It was his body’s way of surviving. And our instincts were ours.
3. Educate Yourself and Others.
On top of that, when my son was 10 months old, we discovered he had food allergies.
Basically, a family member brought over some Greek yogurt. I was working from home, and it was one of those times I didn’t want to argue. So against my inner voice, I gave him a few spoonfuls.
He immediately spit it out and started coughing, got hives on his face, and had facial swelling. Visits to our pediatrician and then an allergist confirmed that he indeed was allergic to cow’s milk (dairy) and egg, among other things.
He always had a patch of excema on his face, but nobody ever told us (first-time parents) that it could signal a dairy allergy. I did try eliminating milk from my diet months before while nursing, but it didn’t seem to help. Now I know that it takes a while to eliminate milk from your system, and that milk and egg are present in so many different foods.
We truly had to take a crash course in food allergies, educating ourselves about milk, egg, and other allergens. Part of this education involved learning how to read ingredient labels to buy safe food. We also had to learn how to eliminate any risks of cross-contamination in the kitchen.
Now that my son is participating in gym classes, music classes, and preschool, I’ve realized many people are as we were: They know a little about allergies, but not enough.
According to a recent Centers for Disease Control and Prevention study, food and skin allergies for children under 18 years of age are on the rise. Thus, a general awareness is certainly growing. However, many families (luckily) don’t have family members or close friends who have severe allergies, so they just don’t know.
It really is our job to educate both ourselves and others. The first step for us was finding a good allergist. The next step has been to stay on top of the latest research and studies. I’m still discovering new ways to keep my son safe.
4. Speak Up; Don’t Be Shy.
In a similar vein, you can’t be shy when you have a child with food allergies, or with any special issue that could endanger them if not known. You can’t sit back and expect people to know what is dangerous.
For me, this was a tough one. I was shy–painfully shy–when I was younger. I always remember when I was in sixth grade and a classmate wrote in my yearbook: “Be more vocal.” At the time, I thought it was an odd way to put it, but it was true and got straight to the point.
Of course, graduating from law school got me over being timid pretty quickly. After my son’s initial reaction to cow’s milk and then learning about how many things have milk and egg in them, any tendencies to be a wallflower went out the window.
On top of being told there was a 30 percent chance he could have an anaphylactic reaction and that we always need to carry an EpiPen, he also is extremely contact-sensitive. This means he often gets hives when touching, for example, a toy that another child touched who had milk or egg on their hands, or when doing something as simple as going to the library.
Many people who are allergic to a food can touch it; they just can’t eat it. Of course, kids often put their hands in their mouths, so we still don’t want them touching allergens. But for us, it’s yet another thing we have to explain to friends, family members, and teachers.
I often am reminded of the adage: God gives you a lesson in many different ways until you learn it.
This certainly has been the case for me. Food allergies have trained me to speak up and be an advocate for my child every day, whether it is to wipe the hands of a child with chocolate candy all over them before class, or by asking family members and friends to wash their hands when entering the house.
I won’t sugar coat it; it can be a constant battle. You always have to be alert. You have to be at the ready. You often have to stick up for your child and explain yourself. But it’s all okay, because it keeps my son safe.
Lastly, I often remind myself to breathe. Relax. Regroup. When you’ve said and done everything you can to keep the environment safe for your child (and your gut tells you it is okay), have a little faith.
For me, having faith is the hard part, as my husband will tell you. I’ve seen too many reactions. I’ve heard too many stories. But after I’ve gone through my checklist, I know that I do have to try to sit back and enjoy the moment. Here’s my checklist:
- check the ingredients of any food he will consume or touch to make sure it’s safe;
- ensure the table, classroom, and other areas where he will eat or play are as free from potential allergens as possible;
- eliminate what I call potential ”points of contact” for allergens;
- alert and educate others regarding his allergies and specific needs; and
- always have his EpiPen and Benadryl at the ready in case he does have a reaction.
Sit back and enjoy the moment? I’m still working on that part. I’ll keep you posted.
Do you have examples of how you’ve been your child’s advocate? Share them with us!
Vector illustration by Pavel L/www.shutterstock.com.