Jonathan was born on August 24^th, 1970. It would take me at least twenty-three years to talk about Jonathan without some part of my body trembling. I share my story with some ambivalence….do I let them see the vulnerable mom, or should I let them see the confident mom, or perhaps the professional mom? I’ve attempted a compromise…someplace in the middle.

Until 1995 when Jonathan was diagnosed with SMS, he had been assigned over twenty labels and diagnoses, from brain-damaged, neurological impairment…cerebral palsy, autistic-like…mentally retarded to just learning disabled. Over the years, those labels would serve many purposes for his educational and medical teams, but for me they would be the only affirmation (albeit never sufficient) of all of my son’s wonders and limitations.

Jonathan, like many other SMS individuals, is a paradox. He feels yet he does not. He moves about, yet sometimes cannot when it is most critical. He’s emotional, yet not when you would most expect. He can say something funny, do something nasty and be enormously helpful all in the same hour. The framework that has worked best for me over the years is to think of Jonathan on manual, never on automatic. Above all, never assume! Through this framework I have redefined patience, understanding, and acceptance. The following are snapshots of our twenty-nine years together.

At age three Jonathan spoke his first clear word or perhaps I should say letter. He held a colored block in his tiny hands and exclaimed, “E!” He picked it out everywhere, in clouds, alphabet soup, and newspaper headlines. Next he started naming things that started with “E.” Then other language followed.

When Jonathan was about nine, he and his brother, Jamie, were at summer camp together. One morning at five A.M., Jonathan found his way to the kitchen, turned on the P.A. system and sang the whole camp a song. Jamie shared this story with a special kind of pride.

In our earlier days, we spent many weekends camping and hiking the trails and mountains of the White Mountain National Forest. Jonathan often led the group on the narrow paths as high as 3,000 feet and as long as five miles. Yet his body would stiffen with fear on three step open stairwells. Today he panics on ramps at airports.

Mornings have often been difficult. I vividly recall one winter morning when Jonathan was ten years old. I opened his bedroom door to be greeted by full sunlight. On the floor lay his window shades snapped off their spindles just next to the ruined Dr. Seuss books he pulled apart in the night. After a bit of searching, I found the clothes I had laid out the previous night on the crust of snow in our front yard two stories below. Back then Jonathan and I were both tired before our days began. Yet, on those same days I frequently received calls from his teacher with a report of some achievement that made me proud. “Jonathan was a perfect line leader, today.” Or, “Jonathan has learned how to add single digit numbers in his head.” That was also the year that he learned all the words to Wynken and Blynken and Nod (our favorite children’s song), which we listened to most mornings before school.

Jonathan has always loved music. Since about age eight he could name the most popular hit songs in one or two notes, including the singer’s name. Today he can tell you the name of the president, the vice president, and the governor of New Hampshire. Yet he cannot tell you the ages of his sister and stepsisters.

One evening, we had friends over to play cards. When I started shuffling the deck I realized they were stiff and bent. I asked Jonathan about them. He explained, half scared and half smiling, that he had played “Go Fish” with our pet goldfish who was swimming in his fishbowl just behind both our heads. He demonstrated how he fanned out about eight cards, fitting them into the bowl to show the fish. He was about 24 then.

In the morning he makes a perfect pot of coffee, grinding the beans and adding a dash of cinnamon. He feeds the dog and sometimes empties the dishwasher before anybody else gets up. Today I hardly notice the nine or ten coffee beans that seem to miss the grinder, or the forks that get mixed in with the spoons. Alex, our dog is pretty happy when Jonathan does the feeding because he gets a little extra.

Cooking is Jonathan’s favorite activity. Using pre-made sauce and packaged spaghetti, he can make a spaghetti dinner in less than 20 minutes. Yet it takes him 45 minutes to eat it.

Measuring and pouring has always been tricky for Jonathan. If I don’t pre-measure his shampoo, he uses the whole bottle. Today, most of the time, he helps me remember and sometimes he pours his own shampoo into a smaller container.

He takes batteries out of everything. Now he puts them back most of the time.

In a ten-minute period Jonathan can talk about sixteen different subjects. Sometimes I get a headache and sometimes I smile because he is so interesting.

He still asks me to tuck him in at bedtime.

This is my guy. Like a mother seems to forget the pains of childbirth, I have nearly forgotten the pains of Jonathan’s and my tougher days (and years). I am reminded of them today by an edge in his voice or a look in his eye; but never because of his behavior, since it really only gets as bad as his favorite negative saying, “de-de”, when he can’t get something right or his favorite television show gets cancelled. I heard that voice this morning, my stomach tightened and I became anxious. I stopped and reminded myself, it’s been years since he was aggressive. So now I usually busy myself and wait a few minutes, sometimes 10 more minutes, and next I hear nothing or that wonderful giggle of his.

Today Jonathan lives in a one and a half story house in a residential neighborhood with one other disabled man and a caretaker who also lives in the house. From 9-2 each day Jonathan goes off to do volunteer work on some days and on others he visits the library, the mall, the dog pound or the park. On weekends, holidays and weeklong vacations throughout the year Jonathan is shared between his two families, his father/stepmother and myself/stepfather and his adult siblings.

Before I share my excitement about Jonathan’s recent progress, I have to give some attention to our toughest times. Jonathan has done most if not all of the horrible things that that have been reported either on the SMS list-serve through email or in the published literature. He ripped my clothing, he pulled enough hair out of my head to fill a small cup, and he hurt his siblings. He screamed obscenities and caused me embarrassment that defies explanation. He hurt the feelings of the people dearest to me more times than I can count. Many mealtimes were spent with my husband or I helping Jonathan “de-escalate.” His tired days were spent with most of us on pins and needles, with siblings usually asking as they entered the room, “how did Jonathan sleep last night?”

During our beginning years, my behavior was also questionable. I got angrier than I should have and lost control when I most needed to be in control. I delivered speeches and screamed things that never should be said to a child. I felt guilty and trapped a lot of the time. I looked everywhere for answers. Doctors told me to teach him to say cat, dog and baby, not letters. Teachers told me I should be more firm. The books I read in the college library confirmed my worst fears; there was no list of published characteristics that matched my son.

Today things are very different. In Jonathan’s early twenties I had seen his behavior improve enough that I began to think he was capable of consistent self-control. I also knew that he felt worse than anyone did about his inappropriate behavior.

I began thinking about the similarities between Jonathan’s behavior and the children I was involved with clinically. As a therapist, I knew that Jonathan would have to get in touch with his emotions before there could be any significant breakthrough. In some ways Jonathan was not that different from the many clients I had seen over the years that had low frustration tolerance and poor communication skills.

One day when Jonathan was in a good mood, I started a discussion with him about the things that were hard for him; like having to leave his Star Wars video to come to dinner or being reminded not to slam the door or having to turn the volume down on his compact disc player. When he added “with my Smith-Magenis and all”, I knew I had his attention. We then talked about how angry he got, which we both agreed was connected to his “Smith-Magenis and all.” He said he hated his angry behavior.

In the months that followed I observed Jonathan more and reacted less. I noticed the times he was patient. I started praising any reaction he had to frustration that was not aggressive. He smiled with pride every time I remarked “you have gone months without losing control”, sounding like a broken record I said it so often. We both took steps back, but we took many more forward.

Jonathan’s “non-violent behavior streak” coincided with his move away from home into a supervised house with one other young man. He likened it to his siblings going off to college. He had spread his wings like they had.

Jonathan finally seemed connected to his behavior. (A statement only an sms parent can understand.) The violent themes of the past that ruled our lives were no longer.

I took out my clinical yardstick to measure Jonathan’s progress over the past few years; I made a list of the differences from his first twenty years: One day he went to his room and took a nap…later he explained that he had been mad. He told me he lost track of time in the shower. He told me it was hard to leave his Batman movie in the middle, (even if he had seen it over twenty five times). He started saying, “in a minute” when I asked him to come to dinner from his video game playing, but then he came anyway. He asked for help with measuring, setting the microwave timer, and cutting the labels out of his clothing (most of the time). He asks that I let him know ahead of time if he needs to stop a movie, video games, shower, mealtimes…usually ten minutes does the trick. He agrees that he has more trouble sleeping if he plays his video games before bed so he stops playing at six p.m. He agrees that a poor night’s sleep does not give him permission to be nasty or disrespectful. We compromise about a lot of things…he likes a lot of freedom…I set limits on safety issues.

Sometimes when I think of whom has changed the most I am not certain if it is Jonathan or I. Although neither of us knew it back then, 29 years ago, we both started out at a disadvantage. Jonathan’s missing genetic material compromised all of his functioning. I was very young, without the knowledge, patience and experience required for good parenting. I made hundreds of mistakes. Yet somehow through our strengths and love, we grew.

Jonathan has become a sensitive, ambitious, helpful young man who is a shining star in my life and in the lives of many other family members and friends. I have forgiven myself for the bad times. Ann Smith and Ellen Magenis, thank you for making sense of my paradox. SMS is now a household word.

Below, pictures of Jonathan at 4, 8, and 29 years: