Re: Mr. and Mrs. Drerio's Journey
2003 was a year of personal and family trials. A month or so following our oldest son’s third birthday, almost over night he nearly went mute on us. His behaviors seemed to have regressed to younger age, than his young 3-years of age. What vocalization he did was repetitive echolalia. Kenji also started to react in peculiar ways to auditory stimuli. You may expect a 1 year old to cry at his birthday party when everyone is singing “happy birthday” but at three this behavior should be gone. Not for Kenji. After his third birthday party, his presents sat for nearly four months up-opened. He refused to open them and he cried if we tried to open them for him. My SIL and MIL recognized something different about Kenji nearly six months prior, but we assumed it was just immaturity. Finally my wife took time off from her business and enrolled in an early education program with him. The teachers recognized right away that Kenji had some serious socialization issues. He refused to join on circle time even with my wife. Exacerbated, we took him to a Pediatric Neurologist, February 2003, and within 10 minutes of our visit he was diagnosed with autism. My wife and I were stunned. You have so much hope and expectations for your children and to be told that your child will have a lifetime of limitations is hard to swallow. It is hard enough when you come to a marriage with your own thoughts and cultural beliefs on how to raise a child, add a disability and it makes the complications that much greater.
Side note: for any young couple reading, I would like to lend caution that you build a strong relationship with your spouse prior to having children. Discuss prior to having that young one about your expectations and raising this precious life. Leave no stone unturned, religion, schooling, etc. Being proactive will make this journey a little smoother (never smooth, but a little is better than nothing). Raising a child to become an adult will test your patience and can have the tendency to divert your attention in the early years. By this, I mean moving your focus away from your spouse to this new life. It can leave you drained and your spouse feeling neglected. It does not have to be that way. If you can live close to trusted family members this will pay dividends or making trusted friends can be nearly as beneficial. You need to take advantage to allow grandma, aunty or a trusted friend to watch your child if even for a couple of hours so you can be a couple again. It is too important. It is too important for you and for your child.
In March 2003 Kenji was enrolled in an early intervention program in the Public School system in our state. And, thus began his many years in a Fully Self Contained Classroom setting. I watched how it affected my wife. As a professional (Speech and Language Pathologist), she felt ashamed. As a mom she felt guilt. I felt guilty. We both wondered “what did we do wrong?” “What could we have done to prevent this?” We know a lot of other parents went through the same, so this was not unique. But, doing so also tested our marriage. We had a lot of anger in those early years, not toward each other but it seemed to put a strain on our relationship. And, we knew the statistics were against us: “While the national divorce/separation rate for first marriages hovers at 40 to 50 percent, divorce rates for parents of children with autism spectrum disorders (ASD) specifically, is said to be as high as 80 percent. Eighty percent!” I know why this is the case... it can drain you daily. The energy level has be that much greater. Planning aspect of every event in life, anticipating every meltdown, understanding challenges for your child are always going to be 10 fold greater. This can also draw a lot of attention away from your spouse and from younger sibling(s). It does. And, yet more guilt. Personally it gave us great challenges and continues to but not as much as it did in the beginning. Neither of us spoke of divorce, but it created some deep riffs at times. There were times when I recall sleeping on the couch for one whole week. When I reflect back I think how immature of me. At one point, during that year we both concluded that for Kenji to have any chance, we needed to have a stronger marriage. We began to take advantage of our in-laws and reconnected as a couple. We needed to rekindle and re-ignite our love and commitment. It was awkward at first, but like anything the more you practice the better you will get. You just need to start.
Toward the end of that year, my parents as they got older wanted to reconnect with me. I was a bit uncomfortable to find out that they decided to sell their house on Kauai to move within a mile of us. My father was showing early signs of dementia and wanted to make amends for all those years growing up under his roof. My mother wanted to connect with her grandchildren. We slowly allowed them into our lives. However, December 2003, my mother suffered a major stroke, hemiplegic on the left side and wheel chair bound. So now my parents pretty much had to change their plans of how they were going to relate to me an my young family given their own challenges. And, they made demands and challenges on us for help.
To be continued.... Just tell me when you want me to stop. I will not be offended.