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Happy Birthday, Dad

July 9, 2012

Hi, Dad. Today is your 77th birthday.

And after that, I have no idea what to say, and for that I feel guilt. Our family is in the process of adjusting to the addition of a new, uninvited and, so far, unappreciated member of the family, named “dementia.” Months ago I took solace in labeling it “early onset,” unconsciously feeling that I could keep it at bay and somehow control its pace of intrusion into our everyday lives. (Note to self: “You’re just not that powerful. Get over it.”)

I am thankful that we have another day together. You remembered our names today, and the names of your grandchildren, and I know that makes you feel good. But no, just like yesterday, and the day before that, you still cannot drive your car, and you need to have one of us go with you if you go for a walk. It is a safety issue both for you and for the other unsuspecting residents of our quiet little town. And yes, I know we will have this conversation again this afternoon, this evening, and tomorrow morning – although it may need to be with my wife, or with mom, because none of us can consistently withstand your anger and frustration yet remain compassionate. We promise to keep trying. You don’t need to take your car in to the shop for work, and, more importantly, you don’t need to pick it up. It is parked in the carport outside the back door, just as it has always been. I did not have it impounded, and you don’t need to speak with anyone at “that outfit” to restore your driving privileges.

Just as we’ve discussed every morning for the last month, we need you to un-pack your clothes and put them back in the dressers and closets, because this is your house. This is where you and mom have lived for 43 years. There is no other “home” to go back to, and, as you blow out the candles on your cake, I silently wish for the words to help you comprehend that this is your home – to somehow cut through the fog and anxiety that are clouding your acceptance and understanding. This is where you raised your children – your daughter and me. The neighborhood barbecues, the base to which we returned from all the school functions, the ballet recitals, the Little League games you coached, the high school games of football and baseball. This is the home you came back to after we all gathered for an incredible week of fun at Disneyland last year to celebrate you and mom being married for 50 years.

I know your world is getting smaller. But we’re trying to help. We’re all on your side, committed to supporting you (and each other) through this.

Then again, this afternoon, after discussing that we would walk to REI together, you snuck out the back door, to prove to us that you don’t agree with the new life rules and have no intention of respecting them. That was an hour ago, and I don’t have the grace to drive around looking for you. I hope you’re not trying to buy Red Bull (that your doctors and family have expressly prohibited), which you have typically done when unsupervised. Or that you are not roaming parking lots, as you’ve done before, trying car doors, looking for one that’s unlocked so that you can drive it (nevermind that the padlock key you carry will neither fit nor activate the ignition).

Yes, I’m angry, and I tell myself that I’m angry at the dementia. But it’s my father that is telling us over and over again that his family does not matter, is less important than his “right” to drive and does not deserve to know where you go when you disappear. And I’m having a very hard time separating the symptoms of dementia from the behavior of my father right now. And it sucks.

Happy Birthday. I wish.

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It’s Your Paradigm That Counts.

October 12, 2011

October is national Down syndrome awareness month. My son with the extra 21st chomosome taught me about the word “paradigm.” My son with special needs. The one with global developmental delays. The non-verbal one. The one who’s IQ is labeled by psychologists as “not testable.”  The one called “oblivious” by his kindergarten teacher – taught me something that had never been within a stone’s throw of being included in my vernacular or lifestyle.

My Webster’s dictionary (yes, I’m ‘old school’) defines the word “paradigm” as “an outstandingly clear or typical example.” Dictionary.com defines it as “an example serving as a model or pattern.”

It tears me up to admit this, but when Hayden was born, I had called my parents to share the good news. During the conversation, I told my dad, among other things, that his first grandson would never pitch for the Yankees or play linebacker for the Trojans at USC. I was focused on the label of Down syndrome. I thought the easiest way for me to learn about Down syndrome (in order to teach our family and friends about Hayden) was to compare and contrast to “typical.” And that’s what I did. I was so wrong.

Until at 4 weeks of age, when Hayden underwent a PDA ligation, or heart surgery to us liberal arts majors. Hayden was braver than I was, and certainly tougher than anyone I’d ever met during his recovery. His perseverence was breathtaking. And he came through with shining colors. I began to see my son. He was Hayden.

He wasn’t defined by a label. He was so much more. At some point, we left behind the extra chromosome, and dealt with the reality of Hayden’s daily routine. It was what it was. Just as we all are, he is who he is.

Around that time, we learned the life-changing philosophy. From Hayden. Not a life coach or late-night pitch man. His life, and ours, is defined to those around us by our life view. And we had a choice.

Strengths-based vs. Deficit-based

We soon found that Hayden (and by extension, our family, each member of it, and, indeed, our whole life) could be described in one of two ways. Only two. It’s pretty simple. Strengths-based, or deficit-based. 

Because Hayden is largely non-verbal, it is left primarily to us (his parents) to describe him, his interests and activities. Early on, we did so to Community Centered Boards, doctors, therapists, family members and friends. We found that Hayden can be described in terms of things he cannot do (deficit-based), or his life can be described in terms of things he can do (strengths-based).

We found that embracing the strengths-based view made us feel as if we were being more true to Hayden. This was the kid who was fighting with grace and courage through surgeries, seizures, infections and every other medical malady one can imagine. He was loving and trusting his novice parents to make the correct decisions on his behalf. It was the least we could do to return the favor.

So let’s try that first paragraph again.

October is national Down syndrome awareness month. My son, Hayden, taught me about the word “paradigm.” My son with the great sense of humor. The one that loves music. The one that uses sign language, and loves to watch Signing Time. The one that loves to go to the beach to admire the ocean as it sparkles under the sun – taught me something that had never been within a stone’s throw of being included in my vernacular or lifestyle. He taught me to be positive.

The First Foray

March 31, 2011

One wife. Two kids. Two dogs. How’d we get here?

We just started this journey. It was yesterday. A wonderfully sunny autumn in Seattle. Surrounded by friends and family from around the country. To this day we both still contend it was the best wedding and reception we’ve ever attended, thanks to those friends and family members.

We just started this journey. It was yesterday. Mark McGwire and Sammy Sosa were leading a blissfully ignorant nation on a late summer chase for the single-season home run record in baseball. It was late August. Sweltering summer days, backyard neighborhood barbecues at night. A boy was born, and needed a home. A place to be safe, a place to be loved, to grow, to succeed and be challenged. We opted in. No reservations. One look at his face, the first time I held him, after watching my wife rock him to sleep in the pediatric ICU. Whatever it takes.

We just started this journey. It was yesterday. Another new year had begun. A cold Colorado winter. A girl was born, and needed a home. A safe place. A nurturing place. A place of understanding, because no one could tell what challenges she faced. How could it not be us? We can do this. She is beautiful. One look in her eyes, one minute of holding this beautiful baby girl. Whatever it takes.

It’s today. I just looked in the mirror. We’ve been married 20 years. The boy is 12. The girl is 11. We still think our wedding was a pretty cool party (how can you have a cathedral, a bagpiper and smoked salmon – and NOT have a great party?).

The kids have taught us a ton along the way. We know more than we ever thought we wanted to know about Trisomy 21 (Down syndrome), Infantile Spasms, VSD’s, ASD’s, PT, OT, ST, MRSA, SID, and the autism spectrum. We’ve learned from doctors, speakers and writers from Boston Women & Children, Johns Hopkins, Children’s Denver, Children’s Seattle, and now, hopefully, UCLA.

But the best teachers? Other parents of kids with special needs. Other parents who see their kids and ours as kids first, labels later. It was a parent of a young man with DS who said, “You can do this.” It was a parent of a kid with Fragile X that said, “Come with us, we’ll teach you.” It was a parent of a kid with autism that said, “You’re one of us, teach with us.”

I’ve avoided writing for the better part of 12 years. Because I’m scared. Of being wrong. Of finding out I’ve let my wife and kids down. Parenting kids with special needs is hard. Frequent periods of little sleep. Periods of insane high stress. Few peer relationships. Fewer deep connections with other dads.

It came to me the other day. I’m scared that someone will shake their head and say. “You know, it didn’t have to be that tough. Here is the one thing you failed to catch. Here is the single point of entry – that one phone call you NEED(ED) to make – that helps everything fall in line. For physicians that understand, planning the most effective education, locating and evaluating the most productive therapies (with easy evaluations regarding whether your kid needs 2 or 6 or 10 a week), planning their futures, etc., etc., etc.”

In the light of day, I know there isn’t “one thing.” Rationally, I know there is no easy way. Deep down, I believe we truly are good parents.I know we’ve done the best we can. So we keep charging ahead, evaluating the setbacks, celebrating the victories.

I love people who believe they have all the answers. I, however, am not one of them.