Four years ago we started down the allergy road. This was a road that was terrifying and frustrating on a daily basis and one in which we had no idea where we would end up. As each path lead us to a more restricted diet for Rylan we became concerned with the quality of life he would have and how would ne get all the nutrients he needed. I came to terms with the fact that this was now our life, we changed and altered to live a new way. A part of me stayed optimistic that maybe one day Ry would out grow his allergies and that things could potentially get easier. The cleaner Ry's diet got the better he did but once his diet was free of all the allergens we still saw a lot of issues that needed to be resolved.
One year ago I began to suspect that there was something else going on with Rylan, something that had nothing to do with his allergies and I was scared. I was not sure how much more we could handle or how much more we would have to alter our lives to survive. We suspected that Ry may have been autistic and started to do research on autism. While looking into it I came across something else - Sensory Processing Disorder. Ry fit this disorder perfectly and we started the process of many assessments. Each assessment he had reaffirmed what we had felt and started to give us a direction to go in. In March 2016 Ry was diagnosed with Sensory Processing Disorder (SPD) and we started therapy with an Occupational Therapist. Each session Rylan began to grow and change. We got to see things in him we were sure we would never see. He began to blossom, sleep better, laugh more and cry less.
After his diagnosis we began to realize that Ry was this way at birth. He was classified as an avoider which means his little body is always overstimulated so he avoids more stimulation like noise, lights, people, smells and so on. This meant we had to re examine all the things we thought we knew about Ry. While they agree he did have issues with lactose and soy he as since grown out of them and doctor believed that the corn allergy was actually the SPD out of control. After a lot of discussion we started doing food challenges with many foods we thought Ry had failed. Since April Rylan has added 25 new foods to his diet successfully. This is leading us to believe that perhaps he no longer has any intolerances and that his diet can expand. While he has yet to have actual corn we are hopeful he will be able to.
This discovery has left me in a weird place. I became the allergy Mom. People came to be for advice and wisdom and trusted what I had to say. I started this blog because of the corn allergy. I identify with the allergy world and being an allergy Mom. I made friends and connections based on this allergy and now I feel a little lost. If Rylan no longer has allergies I am no longer part of that group and I am not sure where I fit in. It seems weird to say that but that is how it feels. I know very few people with kids with a sensory disorder and a sensory disorder is so much harder to explain then allergies ever was.
I know that I should be happy for Ry but at the same time I feel guilt over how restrictive his got and how little he ate for so long. While I know we did what we needed to do to survive I still carry that weight on my shoulders. Our lives shift from food allergies to a sensory disorder life which is even tougher. One small consolation is that I will always be an allergy wife!!
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