Monday, January 17, 2011


"If a perfect parent is not what a child needs,what is? A mother who is, in the words of child psychologist D.W. Winnicott, 'good enough.'" --Brie P. Quimby, from Changed by a Child, Barbara Gill

Bath night is every other night. I wash his hair, brush his teeth, dry him off.  In the morning I shave and dress him, make him breakfast, clean up after. He gets a pill in the morning one half hour before breakfast, another exactly two hours after his last meal but one hour before the next one. Mondays I take him to dance class, Wednesday is music therapy. I watch his diet, clip his nails, give him his medicine, use cream on his hands and acne medicine on his face. He likes to shop so I take him along to the supermarket, Target, Wal-Mart, the mall. I attend his ISP meetings, call his program to check in, ask how he's doing. I write in the communication book. When he has a cold, I blow his nose and bring him to the doctor. I call to cancel the van and call him in sick to work. I make his appointments. I comfort and cajole and reward when it's time for a shot or blood test. I find respite workers, doctors, information, educational toys, music that he'll like. I try to make his day easy and his mood happy, or at least, content.
These things I do for my 25-year-old son. I do it with a grateful feeling in my heart because a mother's love for her children is boundless, and I do not know another way to be.
But if I'm going to be truthful, sometimes I get tired.  Sometimes, just every so often, I don't want to do any of it. The feeling never lasts for more than a day, but sometimes it's a few hours. I feel so guilty when I think about wanting to feel free, for just a little while. What kind of mother am I?
I am afraid to say I feel this way, ashamed to admit it. Hell, my fingers have gone to the delete button three times since I put these words to print. I prefer to present a positive face to the world at all times.
Am I normal? Is it normal to feel like I must do these things while at the same time feel like I want someone else to do them? This paradoxical way of thinking is uncomfortable for me. I hate it.
When I need inspiration, I flip through a book I've owned for many years. The author has a gift, not just for words, but for getting to the very heart of feelings that mothers like me experience. Here is what I found today:
Barbara Gill wrote, of raising children with a disability, "We are knitting on at least a dozen needles. It is complicated and it is hard. But we do it. We drop a lot of stitches, but we knit our lives. And what interesting, varicolored, unique garments they turn out to be."

Wednesday, January 12, 2011


"I like you just the way you are."  Fred Rogers, Mister Rogers' Neighborhood

When people first meet my son, Cliff, they make a lot of assumptions about him. They expect that he's a "typical" person with Down syndrome. They assume he can talk and have a conversation; they ask him if he likes the Patriots and the Red Sox (or Yankees depending on the state we are in) as if it's the most natural thing in the world to know who they are. (He doesn't) They attempt to connect with him and I think that's so kind. Instead, a lot of the time I end up answering their questions for him, explaining a lot, smiling my head off, excusing his inability to respond to certain questions (and re-posing strangers' questions for him in a way he can understand), and trying to get through an initial meeting without making the other person feel awkward.

But my son is not what you might call typical of people with Down syndrome. He has very limited speech for one thing. He is unable to read or write. He's dependent on other people for most of his wants and needs. He's not the guy who can tell a joke (though he can be a total goofball), independently perform all his tasks at his job, or play a game without someone else doing most of the work. He's not the guy walking around town by himself or getting on a bus alone. That's just how he rolls. I, however, think he's perfect. Naturally.

I can recall the countless meetings I've had over the years while Cliff was a student. All I'd hear was "Cliff is unable to... Cliff can't...Cliff won't...Cliff doesn't know how..." I'd sit there listening to what my son did not have the ability to do, as if I didn't already know. When these meetings were over, I'd feel wrung out like a dishrag, exhausted, depressed, angry. A friend gave me some advice. She said, "Don't let a meeting go by where you don't insist that the teachers, the therapists, or the job coach tells you something positive. What CAN Cliff do? Focus on his strengths, not his weaknesses, and build on those." I never forgot that advice, and from then on, I asked them specifically to tell me something Cliff was able to do, and I think it went a long way towards changing their attitudes about him and the way they chose to teach him.

In the spirit of thinking positively, I will tell you that Cliff can make people smile. He can make you feel like a million bucks with one of his hugs. He has created a family dynamic which focuses on love and understanding and compassion. He can teach you things about yourself that you never knew. He can surprise you with his joyful belly laugh. He can change how you think about people with developmental disabilities. When he is singing at the top of his lungs it will make you laugh, or annoy the hell out of you if you're trying to do homework, watch TV, listen to music, have a conversation. He wants you to be happy. As limited as his speech is, he can sing the words to all the songs I've taught him since he was a little boy. If he gets mad at you, he doesn't hold a grudge for very long. He can say "Fuck" at the absolute most appropriate times, something I cannot say about my husband, who uses the word too often for my taste. (A blog post for another day perhaps?)
The thing about Cliff is that you can't know who he is with one accidental meeting at Stop 'n Shop. You've got to give it some time. As I move through my days there will always be someone I run into around town, at the store or the post office or the bank. And more often than not, Cliff will be with me. He is my almost constant companion. On those days, I hope you know that behind my words of explanation and introduction, of excusing and re-posing, lies a sincere wish for you to give my son a chance, to see who he is as a person, not merely his diagnosis. I hope you know that even if he doesn't answer right away, or at all, he appreciates your humanity. He doesn't know the meaning of the word, but he most certainly feels it. And so do I.