Our story begins way back in the Spring of 1985. The vision of a perfect life with the boy I loved was already set in my mind at the young age of twelve!
Fast forward about thirteen years, and Bob and I were engaged to be married! My vision I had when I was twelve years old, was becoming that much more clear. I had my new teaching job, I was going to marry the man of my dreams, live in a sweet, little house with a front porch, and a white picket fence…all this while watching our future children grow up to achieve their dreams in life too.
Our oldest daughter McKenna came along in February of 2000. She didn’t come into this world easily, but once she was here, she brought us nothing but pure JOY. McKenna was the type of baby who slept through the night beginning at the age of five weeks, and she was just an easy-going baby, toddler, and teenager today. She met every milestone, and was chattier than the day is long. Once again, my vision as a twelve-year-old, was well on its way to becoming reality.
In October of 2001, our son Cal was born. BEAUTIFUL is a way we could describe Cal. He had full lips, blond hair and the face of an angel. Bob had his little football player. After Cal was born, I remember someone telling me we now had “The Perfect Family.” She explained that now that we had one of each, a boy and a girl, we were set! I guess I felt that way too. We could have stopped right there with one boy and one girl and our family would have been “perfect.”
That vision of a “perfect family” came to a complete halt in 2003, around the time that Cal was twenty months old. He had been hitting every milestone, although he had several ear infections along the way, and we thought that was the reason why he wasn’t talking as much as McKenna had at that age. We got tubes put in his ears, thinking that his speech would take off after this, but it didn’t. Actually, we began to see a huge difference in Cal. He didn’t want to be around people much, and he lost what little language he had. He used screaming as his way to communicate. I don’t want to say Bob and I were in denial that something was wrong, but it took his sister pulling us aside to say that she felt that this was more than just ear infections causing these major changes in Cal. By the age of three, we had Cal put in a preschool-type program at Nelson Elementary School in Muskegon where we lived, where he could get help with speech as well as help with his behavior.
By 2005, Cal had further testing done through Mary Freebed Hospital, and that is when my vision of the “perfect life” all those years ago, was swept out from underneath us in an instant. Autism. Autism was his diagnosis. “This can not be happening!” is what I was screaming inside my head, and I knew Bob was too. The only thing we knew about Autism was the movie, Rain Man, and that was not our son! What I remember most about that visit to Mary Freebed, was the ride home. Bob and I couldn’t say a word to one another, we just held hands as tears fell down our faces. This was not part of my childhood vision! This was not part of the plan. Autism was a word that would slowly knock down our white picket fence. Autism was a word that meant our child wasn’t going to have a “normal” life. Autism was a word that would mean that our lives would never be the same.
Before getting Cal’s diagnosis, our son Keegan was born in 2004. At the point when Keegan was born, we thought Cal’s changes were due to ear infections, so why not bring another wonderful child into our world? Keegan was a 9 pound 8 ounce beautiful baby boy. He looked like a mini Bob with all that dark hair. While still in the hospital, I had a little “mom radar” go off when I noticed that his right eye seemed to not track as well as his left eye. I tried not to let it bother me. As time went on, Keegan then favored one side of his head over the other, but once again, that is common with infants too. By the time Keegan was eighteen months(and Cal had already been diagnosed), we had Early On Intervention come to the house, because we felt that developmentally, Keegan wasn’t hitting his milestones like he should, and of course AUTISM was on our minds again. This can’t possibly happen again. Keegan wasn’t showing the typical signs of autism, and he LOVED being with people, so we were all very baffled at what was causing his delays.
In 2006, we took a tour of the autistic program run by Linda Elenbaas through Spring Lake Schools. It was on that ride home from the tour that we decided to put our house up for sale and try to move as soon as we could to get Cal into Linda’s program and also continue to solve the mystery of Keegan. We truly believe in our hearts, that God knew we needed to get Cal help as soon as possible. Our house sold in two weeks, and we were able to move to get Cal started in Linda’s program. The word HOPE became a household word at this point in our lives.
Shortly after we moved, my mom showed me an article from TIME magazine that was titled, “Fragile X Syndrome.” I read it. After I read it, I shared it with Bob, and said, “This is Keegan.” The article showed a father with three daughters. Two of the three daughters were carriers of Fragile X, the X being an X Chromosome. The characteristics of children with Fragile X Syndrome can be very similar to an autistic child, so it falls under the “Autistic Spectrum.” Keegan has severe anxiety. Keegan’s speech is very rapid and sometimes very difficult to understand. He is very behind academically, like that of a four-year-old, although now he is thirteen.
It was just a matter of taking a blood test to find out if Keegan had Fragile X Syndrome. Not only did we have Keegan tested, but we had McKenna, Cal, and our youngest daughter Kerrigan tested as well. It was an answer for us, not an answer that was easy to swallow, but now we knew what to do for Keegan and where to get help. Keegan did have Fragile X Syndrome, but what was a blow to us, was that we found out McKenna also had Fragile X Syndrome. Keegan and Cal had been our focus for so long, and McKenna showed absolutely no signs of delay, anxiety, or learning disabilities. McKenna was “perfect.”
Autism and Fragile X Syndrome set a path for our family that we had never envisioned traveling on. To think back to sixth grade and how I thought our life would turn out, now makes me smile. Those smiles when we were in the thick of all of it, were replaced with lots of tears and frustration. The fear of the unknown for our children. Who will help us? Who will understand when our boys throw an enormous screaming tantrum in public? Who will be there to tell us, “It’s okay. You WILL get through this.” For those of you out there who have autistic children, or for grandparents of autistic children, for those of you who work with autistic children and love autistic children, we know that this journey of autism is filled with ups and downs, curves, obstacles, cliffs, screaming, perseveration, Disney/Pixar, stimming, Mario and Luigi, IPads, IPods, Wii games, and most of all LOVE and PATIENCE.
We have met so many amazingly wonderful people along this journey. We know there isn’t a “perfect family” out there, and that white picket fence has been knocked down several times by the events in our lives that don’t happen the way we think they should happen. Autism has shown us that God gave us our children for a reason. We are blessed to have them in our lives, and in those dark moments of frustration that we all have from time to time, we know that our journey does not end here. We will go on to be a light to others around us. Helping each other, loving each other, and realizing that so much good can come from these children who are angels on Earth.