Here I sit....crushed again. I feel like I live on a rollercoaster. And I hate rollercoasters. Lately, I can’t seem to shake the feeling that we are so different than most families. How our family lives our life. How we live with autism. How we live with a different diet than most out of necessity. How we live with severe food allergies. And how this affects the relationships in our lives.
School has started for my older girls and knock on wood….all is well so far. My oldest with autism is being fully mainstreamed for the first time ever, and doing wonderfully, thanks to the Brain Balance program we did last year. And before I can even celebrate her success, I get a call from the preschool where my son is enrolled and will start next week to talk about his food allergies.
I remember the day he tested positive for a peanut allergy…and a rice allergy….and a dairy allergy….and an egg allergy. He was only 7 months old. And he sat there sweetly while huge welts showed up on his back during skin prick testing. Showing allergic to foods he had only ingested via my breastmilk. Tears welled up in my eyes as the welts grew bigger and bigger because I knew this was a game changer. Peanut allergies are life threatening. And the child typically does not outgrow them.
I am no stranger to food allergies. My first-born daughter was also diagnosed with food allergies when we gave her formula for the first time and her eyes swelled almost shut and she had hives all over her body. But Xander’s symptoms were different. He was a very colicky baby and at 5 months old, a rash around his mouth showed up that looked like impetigo. But it was clearly from the solid foods I was giving him, which consisted of rice cereal mixed with breastmilk and a few purred vegetables. He also had eczema, cradle cap, nightly crying due to tummy distress, gas, and he refused tummy time.
*Notice the red cheeks, the cradle cap, the crusty wound above his lip and the red bumps on his forehead.....all symptoms of a food allergy that not even the pediatrican picked up on.
Now that I had a diagnosis, I knew how to fix his problems, and sure enough his symptoms disappeared with diet change (and MY diet change because I was nursing him.) A few months later, I had blood drawn at Duke to see his actual levels and when the results were in, it was frightening. His allergy to dairy, nuts & eggs were sky high with lower levels for rice and avocado. And a year after that, we discovered yet another allergy – wheat. Although he was eating wheat with no rash or hives…he had chronic diaper rash and he had nightly waking until we took the wheat out. Poor guy was likely in distress from the gluten.
So today is the first time….of many I am sure….when I am realizing that living with a life threatening food allergy is no cake walk. The director of Xander’s preschool called this morning to say that she got my e-mail sent to my son’s preschool teachers outlining all of Xander’s food allergies and the possible reactions. Then she asked me…”Are you sure you want to send him as a 2 year old? We will do our best to protect him, but with 10 kids and 2 teachers, we cannot have eyes on him at all times, and I fear he may eat something off the floor that he shouldn’t and then we would have a situation on our hands.”
Let me first say that I love this preschool. They are so wonderful and protective of our kids but it hit me as she was talking, that she could not protect him no matter how hard they tried. She told me that she could make the classroom peanut free, but they share a room with another class that is not peanut free. And what if something from that class ended up on the floor, in the corner where only curious toddler eyes could find it. What then?
And they could have Xander bring his own snack, not to partake in community snack time, but they would likely have to put him at a different table, by himself at snack time so he wouldn’t sneak the other child’s dairy-gluten laden goldfish.
The scenarios that she was concerned about went on and on. She finished by telling me that she is NOT telling me that he cannot come, but if it were her child, she is not sure she would send him. And I knew then, that she was right. My sweet boy could not attend preschool for at least another year…until he knew enough not to eat “forbidden food”. For his own safety. He is being excluded for his own safety.
It breaks my heart. I want him so badly to have social interaction, especially because he is so verbal and bored with me at home while his older sisters go to elementary school. But I suppose there are lessons learned. The preschool director said that from now on, when a parent mentions a food allergy, she will ask more questions, like “to what and how severe?”
And I have learned that I need to keep fighting. For advocacy, for awareness, and for healing. Yup…the fight must go on. And in the meantime, my 2 year old is stuck with his mom for the school year. I guess that’s not so bad.