I cannot even begin to tell you how far out of my comfort zone I am. I have been asked by friends for years to start a food allergy blog, but was too afraid to do it. Our middle child has multiple life threatening food allergies. She is 18 now and not as severe with some of them as she used to be, but still anaphylactic to others. I am not very good with technology. Pencil and paper are more my speed, but after 25 years of marriage and learning to navigate food allergies, autism, keeping the neurotypical, non-food allergic child from feeling invisible (none of this perfectly, mind you) I guess I have a lot to share. So – here goes!
My husband Steve and I have 3 children. Madison is our oldest. She is a recent college graduate and is currently in training for her first “big girl” job. We are so very proud of her. She has worked or volunteered, in some capacity, since she was 16 years old. She has amazing compassion and love for her two younger siblings and has handled playing second fiddle to all of the medical needs with true grace.
Lauren is our middle child and is in her first year of college. Yes, it is a big challenge. The university she attends has a rule for Freshmen to live on campus the first year. She is anaphylactic to wheat, dairy, eggs and peanuts, so eating in the dining hall is not really an option. We have kept her alive for 18 years by cooking the majority of her food. She has still had to be injected with an epi-pen on 6 separate occasions, over the course of her life. So, we chose her roommate carefully and received an accommodation to have a full size refrigerator in her dorm room to be able to hold all of her meals. I make a weeks worth of breakfasts, lunches and dinners every weekend. It has worked very well for her college to be only an hour away. We are so very thankful for Enjoy Life Foods and other companies like them that have come onto the scene over the last several years that have pre-packaged cookies and snacks that she is able to have. Lauren is doing very well this year and just received notice of making the Dean’s List this past semester.
Our baby is Michael. He is 15 years old. He is funny, friendly and has the biggest heart of anyone I know. I have learned many lessons from him over the past 15 years of his young life. I could tell things weren’t the same as with the girls when he was around 11 or 12 months old. He would open up DVD cases and spin them. He would line up toys and have a meltdown and a half if one of them was moved. He did not speak. All of my friends and our pediatrician assured me it was just that he was the baby and the girls spoke for him and that he would do things eventually. If he had been my first child, I probably would have believed them, but he was not. By your third child, you know. You don’t just take what anyone says and go with it because you think they know more. I think even mothers of first-born children probably know. Anyway, over the next 8 years we went through evaluation after evaluation. We were told severe developmental delay, ADHD, sensory integration dysfunction (sensory processing disorder), and then finally what I knew all along and just needed someone else to see – Autism. Of course, before the official diagnosis at the age of 9, we still sought out help and therapy. I had to teach him how to put his pants on and pull them up, put his shirt on and put his shoes on. Nothing came naturally like it had with the girls. I vividly remember going to a parent-teacher store and buying beads and shoestrings to help him learn fine motor skills. I sat on the living room floor and put him sitting in front of me and dumped the beads and string onto the floor. I took his hand in mine and helped him pick up a string and then a bead and put it onto the string. You know that angry cry that little ones have when they don’t want to do something? Yep. That was Michael…and me, except my cry wasn’t an angry one. It was one of heartbreak, that every little thing was such a huge struggle for him. I could tell story after story just like so many other autism moms out there. I tell you how we started out, not to make you sad, but to bring hope to those of you out there experiencing the same. Michael is now in the 8th grade in public school. He still has many struggles, but is doing remarkably well. I cannot wait to tell you more about all of the progress he has made over the years and is still making and what all we have learned on this journey.
Steve and I have been married for 25 wonderful years. Does that mean each day has been wonderful? Umm…no. I can say, however, that I wouldn’t have wanted to do All The Things with anyone else in this world. I look forward to sharing what all we have learned that has worked in our lives, family, marriage to hopefully encourage you as you tackle all the things of life.