Family Stories

Thoughts from a Special Needs “Dadvocate” (Issue 2)

Scott Forlenza

Hey dads, have you ever had a fleeting thought, maybe even daydreamed about life without your child with special needs? I have. I know I’m not the only dad out there who’s ever “thought the thought”, because I’ve talked to other parents, dads and moms, who admit that they have, and still do on occasion, wonder what their lives would be like if … During a recent conversation at the pool, one dad sheepishly grinned and in a slow drawl said; “All the time!” as his 10-year-old son with special abilities decided he preferred his birthday suit to his bathing suit. Every lifeguard’s whistle in a 3-mile radius blew at the same time. It’s OK to laugh, I sure did.

I am the Special Needs Dadvocate of my 20-year-old daughter, Holly. Holly doesn’t talk, is profoundly delayed, and epileptic; she’s also very mobile, very social, likes to hug, is drawn to guys with dark hair, and loves to be where the action is. My daughter has the body of a 20-year-old woman with the developmental sense of a 3-year-old; She is never left alone in any crowd or social situation.

Every three years we have a big family reunion – I’m talking 150 plus people! The sites and host families change each time, and because of the size of the event, 150 people, we host the reunions at local colleges; we sleep in dorms, eat in the cafeteria, use the pool.

This year we, the Denver clan, hosted the reunion at The Colorado School of Mines in Golden, CO. The towers where our dorms were have five stories of suites with five bedrooms and two bathrooms per suite. Outside the suites, inside the locked building on the main floor, is a large common area for people to socialize. As a family of six, this was a picture perfect setup! This was one of the rare occasions where Holly had total freedom to roam from room to room, to hangout with trusted age appropriate extended family, to experience the excitement and the independence of being 20 years old. The safety of the group and the security of the building allowed me to go to bed that first night before Holly was even in the suite.

I remember hearing my wife and the kids come in at about 1 am. Holly had the giggles. My wife Eileen settled Holly in her room and started her lullaby music. At about 3 am nature called. I noticed that Holly’s music was still playing and it was much louder than it should be. I went to turn off the music and saw that Holly was not in her bed. I checked all of the other rooms in the suite, but no sign of Holly. I decided to go check outside the suite and remembered that the doors would instantly lock behind me requiring a key for re-entry. I found the hallways and stairwells empty. The common area was dimly lit. In the hallway that connects the two towers I noticed a magazine rack that had been rummaged through. Holly is rarely without a magazine in her hand, which she eventually tears up in frustration throughout the day. I ran back to the room and alerted my family, who alerted extended family as we began conducting a floor-by-floor, room-by-room search for Holly.

Holly was not in the building, but like Hansel and Gretel, pieces of torn magazine were found throughout all five floors of the towers. We called 911 and extended our search outside, including a nearby stream. Two Golden Police joined our search party and the minutes slowly ticked by. I felt my steady walk turn into a run and my calls out to Holly began to sound more desperate. I ran in a grid, block-by-block through the campus. I did not stop, nor did I slow down, I just ran intent on doing so until I found my daughter. Terrible thoughts filled my head as I ran. And then I “thought the thought”, what would life be without Holly and her special needs? What if she was…gone! The answer was so clear. Life without Holly would leave a hole in our family that could never be filled. Life without Holly would be wrong. It would change us all. No amount of “freedom” or “normalcy” could replace Holly’s unconditional love and authenticity. To borrow a line, Holly completes us.

My cell phone rang; someone had found her. A police car pulled up and told me that a man arriving at the college for work at 4 am, had found a young woman who would not speak to him and refused to leave her seated position in a small parking lot on the western fringe of the campus. She was just a block away from where I stood. I found Holly sitting with her legs crossed under a light, waiting to be found. I cried, not like a girl, but like a Dad.

I think it’s natural to have thoughts about life without special needs. But for the Special Needs DADVOCATE, Holly is my special gift, and I need her, even with her impulsive manners. Like that time when she grabbed food off of the guy’s plate sitting next to us at a restaurant. So we don’t eat out so much – I can live with that.

Peace,
Scott Forlenza
The SN-Dadvocate

Thoughts from a Special Needs “Dadvocate” (Issue 1)

Scott Forlenza

Let’s give it up for dads – all dads! Married dads, single dads, step dads, young dads, old dads, new dads, experienced dads – all dads! Being a dad is the best job in the world, certainly the best job that I have ever had – and the hardest. The core of being a dad lies somewhere between the life-changing experience of watching the birth of your child – and knowing that it’s not a matter of if your kid will mess up some day, but when they do, will it be a life-changing incident?

OK dads, what did you imagine your kid doing when you read, “A life changing incident?” I’ll bet that as soon as you imagined it, you began thinking of ways to fix it. That’s what dads do – moms nurture and we fix stuff. In our hearts and brains we have a dad’s garage where we take life’s stuff and we fix it. Dads fix stuff and that includes their kids.*

(*Some assembly required and we don’t need instructions!)

I have four kids, ages 10 to 21, including my 20-year-old daughter Holly. Believe me, they all need a little fixing, which is cool because I love being able to fix stuff in my kids’ lives! Holly has special needs. The professionals describe Holly with a vague diagnosis of “severe/profound mental retardation with unknown etiology, apraxia, non-verbal and epilepsy.” I sometimes wish Holly had a specific diagnosis with a fancy name and proven treatment options, so I’d know what to call this thing. When I say this “thing,” I’m not referring to my beautiful Holly, but rather the part of Holly that the world often sees as broken. The part I can’t fix.

I want to acknowledge the special needs of dads of kids with special needs. I’m referring specifically to the dads of kids with special needs. Dads of kids with stuff that dads just can’t fix. It’s time to come out of the proverbial closet and admit that you can’t fix your kids’ special needs. I know for me, it was like dropping a 40-pound weight off of my shoulders. And for all you dads who secretly grieve because you think the unthinkable, that your son or daughter is broken and you can’t fix them; you are not alone – You can’t fix this one.

By now I’m sure there are people, men and women, squirming in their chairs thinking, “How dare he call kids with special needs broken things to fix!” I’m not trying to stir the pot, I’m trying to reach other dads in denial who may still think that they can fix anything; dads who blame themselves when they can’t; dads who’s lives and marriages are unraveling. I want to say from experience that your kiddo doesn’t need to be fixed, you do! And that is something you can fix. Just ask other dads of kids with special needs.

I’ve been to conferences like Parents Encouraging Parents (PEP) where I’ve seen amazing things happen in a room full of dads sitting in chairs in circles, with their heads down silently cursing their wives for making them come to some stupid men’s thing, having to listen to these other whiners. Then one of those guys, one of those dads of a child with special needs, admits that he stays late at work so he doesn’t have to go home and you lift your head, your eyes meet his and you both wipe away something pretend in your eyes because real men don’t cry, and you think to yourself, maybe the way to fix this is to raise your hand and say, “I do that too, and I thought I was the only dad who felt that way.” But, because you’re a guy you don’t raise your hand, you’ll need a little more time to think of a way to fix HIS problem.

Peace,

SN-DADVOCATE