How is Ned doing at his job in the mailroom?

Alas, the job in the mailroom disappeared. Ned was doing it and doing it well, but the television station decided they really wanted someone full time in the mailroom who could also be involved in building maintenance chores, so Ned's contract wasn't renewed. We are just now beginning the active pursuit of another job for him. He describes his current occupation as singer/songwriter.

Does Ned see himself as being married someday?  How does he view marriage or a relationship?

He most certainly sees himself as some day marrying, although he never describes his girlfriend of many years as his fiancée, and their relationship is strictly platonic. He also sees himself having children of his own. I think and hope the former will happen (I once did a news piece about a married couple, both with Down syndrome, and they seemed to be doing fine with a little governmental help, and a lot of support from their church.) His telling me the other day that he was saving all the books he hasn't read since he was small for his own children broke my heart. In some ways Ned would be a wonderful father. He loves children, especially very young children; loves teaching them and being around them. But of course that will never happen, and he has no realization of that at all.
          I think the concept of having a relationship is very important to him--important for him to be able to say he has a girlfriend--even if the mechanics of it don't interest him in the least. As far as I know, he has never initiated a phone call to his girlfriend, and has a tendency to mutter unhappily when called to the phone because she has called. Their dates are few, and almost always initiated by her. But her existence is something he never fails to mention when need be. The down side is that, though I think she would be an inappropriate mate for him--not nearly as functional as he is--her presence precludes him from even considering other possibilities.

The way you describe Ned in the book, it sounds like he has really good speech. What did you do with him when he was younger to help his speech develop? e.g., did you take him to private speech therapy, do oral-motor exercises, etc.?

We have been extremely lucky that Ned has never really needed any speech work; he has always spoken well. I think they did some work very early on when he was at the Experimental Education Unit at the University of Washington, and I think his years of singing lessons also helped, but in the main Ned just hasn't had any speech challenges. It could also be part of being around many people who talk a lot.

Aren't you concerned about all the nitrates Ned is getting by eating so many hot dogs? Have you tried switching him to veggie hot dogs? What would happen if you just refused to buy hot dogs for breakfast and he either had to eat something else or go hungry?

I've been concerned about the hot dogs for more than 20 years now, and kept seeking support from his otherwise splendid pediatrician, who never seemed that concerned. We do veggie dogs sometimes --though he knows and dislikes the difference--and turkey dogs as well. And frankly, we've never had the nerve to just refuse to get the dogs. But part of that is being intimately aware of Ned's awesome stubbornness about some things, and food is definitely one of those things. I think we would lose such a confrontation. Also, what he eats is one of the few things in his life over which he has considerable control, and we are reluctant to remove the controls he actually has. But you are exactly right that the hot dogs have bothered me, and not just the smell of a microwave hot dog at 7 in the morning.

Like your son, my daughter isn't really interested in any physical activities. She would sit in front of the TV, the computer, or a book all day if we let her. Have you figured out any strategies to motivate Ned to get more exercise that you could share?

Sort of. Seeing his parents do more exercise--especially his inherently sedentary father--has helped. When we go to the movies, for years I've made a point of parking 8-10 blocks away so he has to walk it. And I have told him we are going to start going on walks when there isn't a movie at the end--around the neighborhood, etc.,--which we have in fact begun. We now walk up a six block hill to the video rental store, or we don't go there. Also, he has a tri-com--a kind of three-wheeled bicycle--which he now rides around a lake once or twice a month, with his mom on a regular bike beside him. And he bowls once a week. So slowly we are getting more physical activity into his life.

Parents and advocates are increasingly pushing for people with DS to be “included” in all aspects of “normal” community life—from schools, to recreation programs, to jobs.  Is this a realistic goal?

I could do fifty pages on this subject and never really answer the question. It’s a realistic goal for some people, though certainly not the majority. (The question also presumes that all DS people have the same ability to adapt to “normal life.” This is ludicrous. And all black people don’t have rhythm, either, nor do all Italians talk with their hands.) In school Ned did a lot with the non-Special Ed kids, and these experiences were almost always extremely positive, most beneficial for Ned, just as his membership now in a “normal” community choir is going very well. At the same time I have seen kids with DS hopelessly lost and miserable in mainstream situations, which was good for neither the kid nor the people he or she was with. For it to work, it takes a great deal of extra effort on the part of parents, caregivers, teachers, employers, etc.  For instance, Ned was once mainstreamed in a high school American History ESL class. We worked with the sympathetic teacher almost daily to devise assignments that were suitable for him (not easier assignments, but assignments that dealt with comprehension rather than language challenges.) The class was a success for Ned, but it certainly wouldn’t have been had we just dumped him there and hoped for the best. My problem with parents who insist their children with DS be treated exactly like everyone else is that the overwhelming majority of those parents I’ve known were really driven by an inability to accept their child’s disability. They felt like just having the child was an indication of some kind of failure on their part, and were handling that by ignoring reality. Ironically, they were demanding respect for their child’s abilities when in fact they didn’t have that respect themselves.  

In your book you describe moments when Ned is perceived and treated by strangers both positively (on your cruise around the British Isles) and negatively (on a packed plane people avoided the empty seat next to him).  Overall, how do you feel about the way Ned has been received by people who don’t know him?    

I think Ned has been extremely lucky in the way people have treated him, for many reasons. We’re lucky to live in a part of the world where people at least try to be nice to each other. And Ned almost always exceeds the expectations of the strangers he meets. It is not coincidental that the people who declined to sit beside him on the plane didn’t meet him, they made a snap judgment just by looking at him. The man who eventually sat between us had a nice conversation with Ned about a variety of things for almost the entire flight. Finally, and perhaps most important, Ned won’t let people dismiss him. He bores in on them, because it never occurs to him that we aren’t all equal in everything. When Ned was around 18, I introduced him to Paul Schell, then the Mayor of Seattle.  “Mayor Schell,” I said, “this is my son, Ned.” Schell looked at Ned, and in his biggest, clearest voice as if he were speaking to a four-year-old, said “Ned, how do you do?” And Ned said, “Paul, nice to meet you.” Equals.

Did you and your wife find yourselves raising or treating Ned differently from your other son Ira?  How alike, in spite of their differences, are Ned and Ira (if that's not too personal)?

I've said before--maybe in the book, I forget at the moment--that there wasn't that much difference in raising Ned and raising Ira, just that the Ned experience was more intense, and the various developmental stages lasted longer--in fact, will not ever end, as opposed to Ira, who is out of the house and has been for years. That's the short version of the differences in raising them; the long version would take many pages, but come to the same conclusion. And they really aren't alike much. They both have good senses of humor (thank God) and laugh at some of the same things. Neither is very competitive, which is why Ned has never been involved in Special Olympics or any other team sport, and when he bowls, never pays the slightest attention to the scores of his fellow bowlers, but only to his own score. Ira was on his high school and college football teams, but I think the appeal for him was almost entirely the beneficial experience of being on a team, not the thrill of victory or the agony of defeat (which is good, because both in high school and college his teams were simply awful and there was very little thrill mixed with the agony.) They both like to read, they like movies and music but have entirely different tastes in both areas, and that's about it. And I don't think their lack of similarities has much if anything to do with the fact that one is very bright, and one is developmentally disabled. They are just different people, one (the ham) taking after his father, while one, the quiet one, taking after his mother.

It was really inspiring to read about Ned's guitar playing and song writing talents. Has Ned written any more songs or has he been doing any performing anywhere? (Also, did you know that there's a music conservatory just for young people with disabilities—the Berkshire Hills Music Academy?  (Any thoughts of sending Ned there?)

Ned writes songs practically daily--or I assume he does, because he occasionally refers to them, even as he never shows me the songs or performs them for me. Most recently he performed an original composition as part of an evening performance at a senior center by the community choir of which he was a member. (He sang a solo with guitar, after first auditioning the number and the performance for the choir director.) I'd never heard of the Berkshire Hills Music Academy. I'll check it out, and thanks...

Ned is quite a remarkable young man in many ways – he plays two musical instruments, can recite poetry by heart, and is an expert on pre-1966 rock ‘n roll.  Is he a typical young adult with Down syndrome?  Do you think these interests and talents are going to help him to be more independent in the future? 

I don’t know what’s typical. I’ve met many people with Down syndrome who didn’t seem as functional and intellectually developed as Ned, just a few who I thought were his equal, and none who I thought was more functional—which could just be a father’s ego talking. But I’ve always avoided such comparisons, because they have the stench of “my kid’s better than yours.”  Anybody who reads Adventures in the Mainstream will meet a father who is proud of his son and not at all reticent about singing his praises and describing his triumphs, but I certainly hope the message from that is not “my kid’s better than yours.” I hope the message is, “Find what’s great about your kid, and we’ll sing of them together.” And yes, of course I think Ned’s talents will help him; they’ve already helped him. There’s a lot to be said for a profound and unflagging curiosity about almost everything, combined with a great spirit, a great memory, and a great heart. 

If you could give advice to new parents of kids with Down syndrome, what would you say to them?

The first thing I would say is what a very great lady said to me on the day we learned Ned had Down syndrome: “It’s not the end of the world.” Or to paraphrase what Emily Perl Kingsley once said: “You thought you were flying to Italy. You were set for Italy, you’d studied the language, knew the sights you wanted to see. And then you landed in Holland. Not Italy. A different place. Not necessarily a bad place, just not what you were expecting.” And I would add, “So learn some Dutch, and get on with it.” 
          I would also say this: If you let it happen—and that’s a big but crucial if—there will be joy, and laughter, and sorrow, there will be tragedies but also triumphs. As quickly as you can, get over your self-pitying belief that the gods have screwed you. Embrace people who embrace your child, and ignore the others. Especially ignore those who want to show you how compassionate they are by sharing your tragedy. You don’t have a tragedy, you have a child, and you can get as much satisfaction from that child as you’d get from any child. But there’s no question you’ll have to give more; give more of your life, of your time, of your energy, of everything you have, if you want to make that child’s life a success. In other words, you’re about to find out just what kind of person you really are.