When parents have a baby or child with a serious diagnosis, there are many unknowns. One is the future—what will happen as my child grows up. Will his siblings resent all the attention I give him? Will he have friends? Will he have a place to belong? Will his life have meaning? Will I be able to meet his needs? Will that be enough? Are all our dreams of the future shattered?
Here is Sam’s story.
Sam was born in August 1990 six weeks prematurely. Nothing was right, even from the start. He didn’t breathe, he couldn’t regulate his body temperature, and he couldn’t eat. And things didn’t get too much better very fast. He had bradychardia, he had strange breath-holding spells (or were they seizures?) when he would turn blue and pass out. He spit up a lot, he had terrible screaming spells, he had pneumonias, he wasn’t moving normally, his developmental milestones weren’t being met…he was blind. That was just the first four or five months. At eight months we found out he had an intestinal malrotation and needed surgery for that as well as a nissen fundoplication and g-tube placement. That was the first of many intestinal surgeries and hospitalizations. At age three there was another suspicion that was confirmed —he also had autism. We spent so much time at Maine Medical Center in Portland, Maine, that he and I virtually lived there. My husband and our older daughters, ages 11 and 14, shuttled back and forth to “visit” us. There were so many doctor and therapy appointments, so many evaluations and tests, procedures and surgeries that about four or five years passed in a blur. See, I don’t even know how many years!
But gradually Sam was better intermittently, and we adjusted to our new life. He eventually sat up, crawled, and learned to walk with a walker. He did not learn to talk, and he still had a lot of medical problems and developmental delays. He had insomnia. It turned out that he wasn’t blind in the ordinary sense, but he did have cortical visual impairment. It was pretty clear that he was never going to be very much like any other kid. He had very strange, maladaptive behaviors and a lot of screaming when things weren’t the way he thought they should be (like, if the car turned right and he liked left turns). It was pretty clear he was not going to be very much like any other kid. There was a lot to be scared about.
He started “home” school at a few months of age — vision therapy, physical therapy, occupational therapy, developmental therapy, and then some kind of autism therapy. By age 2.5 he was off to special preschool in the mornings and the individual therapists came in the afternoons. Too much therapy!! But at age 4 we began a new kind of therapy, Applied Behavior Analysis — at school and at home. That was a great turning point. We finally had everyone on the same page, working as a team. And if they didn’t want to get on board, they got out. We were learning too.
About the time Sam was turning five, our family made some decisions. It was pretty clear that I couldn’t work outside the home because there was no daycare or provider for Sam. His doting sisters were now 19 and 16 and it was pretty clear that Sam was the center of the universe to all of us…was that the best thing for him? For us? We had the bright idea that we could put our newfound skills to work, give me a “job” so I wasn’t so totally focused on Sam, and provide siblings to Sam nearer his age. A win-win!! The job? We became a treatment foster family. This means that we provided a home to kids with developmental or mental health issues.
Ho ho ho! and it wasn’t even Christmas! First came a couple of sisters aged 11 and 12 — not exactly the little boys Sam’s age that we had pictured, but they definitely became siblings, made our lives more lively, and kept us from over-focusing on Sam. They stayed with us until they were ready to spread their wings and fly. Next came another girl…this time only six years old, then a few years later a girl aged 11. Again, these kids were permanent siblings — Sam, and the two younger girls were each only a year apart in age. We had many others in and out temporarily while they were either working on returning to their birth families or moving on to a different situation, or just for regular respite.
So Sam was never lacking for siblings…especially sisters. It wasn’t always easy, it wasn’t always pretty, but it was our family. It was a hopping household for sure.
Meanwhile, Sam grew, and grew older. He had his intermittent emergency hospitalizations, usually related to his gastro-intestinal abnormalities. He had a few surgeries, lots of doctor appointments, lots of testing, some ups, some downs. When he was 10, we had to leave our hometown due to the paper industry going belly-up…from human resources in a very large paper company, David moved to human resources in a small hospital, and we moved 50 miles down the road. We decided it would be a good move and adjusted to new providers, a new school system and a new house. And good news! We were now 45 minutes closer to the nearest service town! Since we have always had to make that trip to Bangor at least once a week and sometimes daily, that was a big deal. And the ambulance could get to Portland 45 minutes quicker too…always look on the bright side of life!
And so time passed. Sam went to school — there were ups and downs. He developed an exaggerated startle reflex, hyperekplexia, which further compromised his ability to walk. We spent untold hours advocating at the state and local level for appropriate services. We had a few unpleasant experiences and we had a lot of pleasant experiences. He had some wonderful teachers and after-school staff, he had a few not-so-good ones. We traveled a lot: by planes, trains, and automobile and had a lot of amazing adventures with our crazy family. Sam never learned to walk independently or to talk, but he learned to get around and he figured out how to communicate in his own way. (He had to with all those sisters!) He made friends, oh boy, did he make friends! Time flew by, and then it was time to cross over into the dreaded “other side”…adulthood.
And you know what?? It is great here!
Bored? Lonely? Stuck at home? Never!! Over the past few years Sam has truly found his place in life.
One advantage of living in a very rural area is that there are no “day programs” —Sam has one-on-one staff for 37.5 hours a week. They are busy — with Special Olympics, their self-advocacy group, friends, and community groups all over town. He has one special volunteer job, and participates in lots of other special projects, for instance, they are planning a special KAT6A fundraiser for spring, because Sam finally has a diagnosis, and a cause, and his friends want to help. Sam has more friends than I do!
He still lives at home with us because that is what we choose. And because we find it more difficult to travel now that Sam is a grown man, we have turned our property into a full-fledged redneck resort, just for Sam and our family and friends. If we can’t go to them, we want them to want to come to us, and they do come! Three of his sisters left home, went out to explore the world, and then came home to Maine. Along the way they found and married three very special men, who love Sam almost as much as his sisters do. Another sister lives in a nearby town. There are children, dogs, babies, friends, and family underfoot constantly…and adventures to be had with all of them. Uncle Sam is a great favorite — who else’s uncle can play with toys the way he can?? And Sam has lots of fun grown-up toys everyone wants to share!
He makes a difference to many and has a fulfilling, meaningful place in his family and community. His greatest gift is making people feel loved—his smile can light up a room and his hugs make troubles melt. He participates. He contributes. There isn’t anyone who knows Sam who doesn’t love Sam. What more could anyone want?
It is not the life I pictured when I married my handsome prince nearly 43 years ago. But it is a far cry from the life I feared and worried about twenty years ago.
Life is good here on the other side with Sam.
