After two long months of bed rest, my labor was only 59 minutes long. Those 59 minutes were filled with excruciating back labor, a 20 minute drive to the hospital and a very nervous nurse just hoping the doctor would arrive in time. She did, and my son was born and whisked away to have his breathing monitored. I was almost too exhausted to worry – almost. After Davyn arrived back in my arms, he seemed perfect, with his lovely shaped head and beautiful dark hair. Before leaving the hospital, he was circumcised and brought back by a nurse who was amazed he didn’t even whimper during this procedure or the stick in his small head for blood. This may have been our very first clue that something wasn’t quite right, but we didn’t know it then.
Kari Horton is a 35-year-old mother with four children. Her 10-year-old son has Autism, Sensory Processing Disorder, Mitochondrial Dysfunction and other medical issues. In Horton’s community blog, For the Love of a Boy
, she’ll share her family’s stories in hopes of connecting with and encouraging other special needs families.
As the next three months went by, we began to notice some differences between him and our older daughter (she was four years old). He did not love to be held, and he didn’t like to have his hands touched. He would stick his foot out for me to hold while lying next to me for comfort instead. Then, he had a few episodes where his breathing stopped. Eventually this was diagnosed as sleep apnea, and he had surgery to correct the issue. At the age of eight months, our little man had an abnormally large head for his tiny body. We saw several doctors, but none seemed to have any real answers as to why.
After this, symptom after symptom started to arise. He said three words (mama, dada and his sister’s name), then they were lost and he stopped speaking altogether. We started signing with him to ease his frustration when he couldn’t communicate. He would only sleep 45 minutes to an hour, then would wake crying and would need to be soothed back to sleep. None of his milestones happened “on time,” so he was labeled delayed. He cried whenever we went out into public, he did not like visitors who came to the house and every noise seemed to make him miserable. He would scream when the nurses would put rubber bands around his arm before a blood draw, but wouldn’t flinch when the blood was drawn. He began to head-butt the wall or my head, and took pleasure in what felt like pain to me.
We knew something was wrong, but what? Ten years ago was a lifetime away in terms of doctors understating Autism, Sensory Processing Disorder (SPD) and testing for other genetic disorders. We went to more doctors than I can remember at this point, universities, children’s hospitals, pediatricians – the list goes on. We were told it was likely he had a genetic condition and would not live to the age of one, then two, then eventually that changed to four and then it was maybe eight. We were told he would never walk due to his muscle tone issues. More than one doctor was positive he would never speak and believed he had mental retardation. Some of the doctors told us he threw fits because we were bad parents and we should take him to a strict day care for help. Some had no answers for us, and some helped the best way they knew how.
Finally, we were referred to the University of Michigan (Mott’s Children’s Hospital) in Ann Arbor, Mich. It was a three hour drive from our home, and he hated riding in the car. He would bawl at even the smallest sprinkle of rain. We decided it was worth the try, even though it seemed every other specialist had failed us. That was the first good decision we made. The specialists and staff were amazing. We drove back for countless appointments, tests and procedures. They were the first to suggest therapy to us, and we immediately enrolled him in all three types available: occupational, physical and speech. A trio of wonderful ladies came to our house and did their best to help us. When they realized our needs were greater, they continued to come for each appointment but suggested we look for someone more advanced in the occupational therapy field.
We did a lot of research and considered many options. We tried many different local therapy centers. My son was now 2 and a half years old. He refused to eat solid food, and his diet consisted only of milk from a bottle and juice from a cup. He didn’t speak, but had started to walk. We were isolated to our home. He could not tolerate the lights, sounds and people out in public or outside. He would not allow me to touch his perfect row of cars or the spoons and remotes he carried around. It agitated him when I left or entered the room, and it took him almost an hour every night to accept his father into the room without crying. If it rained or someone mowed outside – those were his worse days. At this point, we knew we had to do something big to change his future and ours. We happened upon an article that mentioned the STAR Center in Colorado. The expense of the two sessions of intense therapy, the two plane trips there and back, and the cost of four weeks of a hotel room were overwhelming. Then, there was the stomach-wrenching knowledge that my son would HATE every single moment of the trip – the therapy, the hotel and every other minute in between. There was a chance it wouldn’t help at all, like the other expensive therapies he had gone through, but what if it did help? We had to try. That was the second good decision we made (after what seemed like hundreds of bad ones).
After a miserable trip and two weeks to follow (and more episodes of throwing up than I care to remember), we came home from our first session with a diagnosis and a miracle. Without a doubt to me or his therapists, my son had Sensory Processing Disorder (SPD). This diagnosis is still not formally recognized by some doctors, even today, but that didn’t and still doesn’t change my opinion. My son was speaking, and the first thing he said…he counted his cars up to thirteen. He was eating baby food and other small items like crackers. Most amazing of all, he could go to a store for a short period of time without a complete meltdown. We had a break at home, then went back for our last two-week session. This was the first glimpse of hope we had in his first 2 and a half years of life. He could talk, he could walk and he would not need a feeding tube.
I’d love to say the rest of his life was pleasant after that, but that just isn’t true. He has had many very low points where he has been sick and had multiple surgeries to correct illnesses and other issues. He has been hospitalized. He has missed months of school. School – well, that’s a whole different story that I can’t get into at this point. The truth is the next eight years were still a struggle. Many changes have taken place. We have moved, had two more boys and made many more good and bad decisions trying to help our son. He does have a host of medical and behavioral issues, but he isn’t incapable of learning or enjoying life. Our lives are still filled with doctor appointments, therapies, uncontrollable tantrums, struggles, illnesses and bad days that I’m not sure I’ll make it through. But because of our persistence to help our son and many doctors dedicated to helping children like him, our lives are also filled with happiness, joy and love. Our son is still alive, and we enjoy life no matter how hard it is for him or our family.
The most valuable lesson I learned as a young parent of a baby and toddler with special needs was to trust myself. Like me, you know your child better than anyone. Find a doctor who is willing to help and listen to you instead of telling you the problem is you or your child. Be willing to go above and beyond what you think you can physically, mentally and financially do – you will surprise yourself. Above all else, accept your child. Accept that he or she is different, accept that your dreams of his or her future will have to change, understand that neither your child nor you will be perfect and celebrate each accomplishment no matter how small….basically just love your child, and don’t lose hope.
This was just the start to the long road ahead. I hope to encourage others with more posts about my family’s struggles and triumphs. My husband and I often felt alone in our journey to help our son. Hopefully, we can now reach out to other families so they don’t have to feel the same way.