Thankful for This Hot Mess, And for You, Dear Readers

Just writing a short post to extend some love to those who have made this blogging journey with me. The fourth anniversary of our move from New York City to North Carolina is approaching, and I figured now is a good time for a little reflection.

First of all, thank you to all my readers, made up of friends, family, colleagues, virtual friends and strangers who have stumbled across my blog. It is a great pleasure to write, knowing that I have responsive eyes on the other end. It is only by your grace that I continue to punctuate cyberspace with my keystrokes. Thank you!

Here is what else I am thankful for — the time to write. Sunday mornings are often when I get up early and sneak out to my local coffee shop for the space I need to think. (Thank you, Poppyseeds Bagels! Craving some real New York bagels? Check it out!) I’m thankful for my editor, Bob, a professional journalist who reads most of my posts and suggests ways to make them better. He always knows exactly the right things to say! Yes, I think it’s safe to say I am one of the few unpaid bloggers with an editor. Bob and his wife, Sherry, own Early Bird Developmental Services, my son’s main therapy provider when he was a baby. One fine day a few years ago, Sherry wisely and brightly suggested I start a blog, as she knew I often felt frustrated and needed some sort of outlet. “And Bob can edit it!” she said. And so it was born.

Also, I will be very grateful for the coming weekdays,  glorious in their ordinariness, when the kids are in school and everyone is back to a tried and true routine. We just don’t do as well without schedules – weekends and vacations are fun, but messy. Or maybe a better way of putting it is: I am naturally chaotic and unpredictable, and having too much free time just exacerbates this problem, which seems to be part of our DNA and gotten passed along to our kids. Children with special needs like my son don’t do well with too many unstructured blocks of time. They don’t get the input their disordered sensory systems desperately need and it often shows in their behavior.

Over the recent winter holiday breaks, I spent most of the time being sick, much like the rest of America. When I passed out for a two-hour nap one day, I awoke to find that my oldest daughter, age 7, had decorated the play area for “Mommy’s Love Party,” with hand-drawn pictures of her and me, and signs that read “I Love You Mommy.” Truly, you could not ask for better expressions of fondness. She is such a lovebug! I adore her, and I so treasure her eagerness to put her love on display. (I’m laminating those works of art so that during her teenage years, I can show her that she did in fact once love me.)

Our son with Down syndrome, who is 4, spent much of those vacation days following me around like a puppy. One minute could not pass by without him yelling “Maaa-ME!” à la Marlon Brando in “A Streetcar Named Desire.” It was either “Maa-Me wook,” for me to look at his latest crayon stroke, or “Maa-Me elp me,” for me to assist him with some task he has completed on his own many times (or that he shouldn’t be doing in the first place.) Trust me, I love what this represents for his speech and cognitive abilities, but making dinner really needs to stop taking over two hours.

One time, before we even made it to 10 a.m., he had been charged with multiple counts of mischief. He shattered his beloved piggy bank, which he’s not supposed to touch without permission. Our corner joint saw his little face relegated there multiple times, once for hitting his sisters with the broom he was supposedly using to “cwean” the floor.  During an attempt at independent potty time, he put the gross end of the plunger up to his face to use as a bullhorn. Another time, he wet his pants and was told to put them in the bathroom sink so they could be washed. Well, he couldn’t wait for me to do it, so he did it himself. In the toilet. Yeah. Luckily, the water was clear and cleaning up the half-inch or so from the floor did not take too long.

One Saturday we decided to head out for breakfast at our favorite restaurant before doing a little shopping. We were seated at a table that was half booth, half chairs. Before I could tell him to climb into the (more stable) booth area, my son sat atop a chair and leaned on the table in front of him. The table proceeded to tip forward and spill all its contents (silverware, salt shakers, sugar packets), including him, onto the floor. No one was hurt in the making of that anecdote.

But we sure know how to make a grand entrance. Thank you, son, for keeping us on our toes. Sorry about passing along my crazy genes, but at least life is never dull. For this, I am truly thankful.

And for these hats, which we fell in love with during our shopping trip:

Panda Bear: Gentle big sis

Angry Bird: Grumpy, feisty little sis

Sock Monkey: Goofy little brother

In case you missed my other latest work, I had the recent honor of being a guest blogger on the web site of Amy Julia Becker, a talented and respected book author who writes about faith, culture and disability. She has a daughter with Down syndrome and a blog called “Thin Places” at //www.patheos.com/blogs/thinplaces/ You can read my article here. Please also spend some time exploring her blog; she’s a truly graceful and grace-filled writer.

I Found a Monster Inside Me, And I Put Her to Work

What will they remember about their childhood?

Will they remember those happy, sunny days that didn’t end well, because Mommy could only hold it together so long, and then broke down at the very end, when we were almost at the finish line? Going to bed is supposed to be the peaceful, gentle end to days overflowing with activity. And usually it is.

But then there are some days – a few of them occurring lately – where the end is a crescendo of frustration, where tired Mommy, thin of patience, loses it. Why? Because I have already held it together and smoothed things over 535 times that day with a smile on my face. The time for smiles is over.

The girls are bickering, again. Our 4-year-old son with Down syndrome, in the early stages of potty training, has saved his daily “deposit” for his clean pull-up and fresh pajamas even though we just sat him on the potty, where he happily read for 15 minutes. I start to talk harshly, bark orders: “Put on your pants!” “Get in bed!” “Be quiet!” And so on. I hear a few sniffles, can feel the guilt creeping in. I apologize, give everyone sweet goodnight kisses, but I’m still furious, and I’m sure they know that. My husband comes in to see what is the matter because he hears me stomping around. I express my frustration with our son. “He’s not doing it on purpose,” he says. “Yes he is!” I retort, like a school child.

Something about having three children has brought out the worst in me. I cannot figure out if it’s our son’s special needs and stubbornness, the twins (he has a typically developing and equally stubborn sister) or just the combination of my hotheaded Italian genes and too many small kids at once.

ME, THEN: WITH ONE CHILD

© Shazeen Samad, 2005

 

With our first daughter, now 7, I felt like the proverbial good mom, or at least good enough. She had a nice routine and got to bed on time. I worked full time but weekends were ours. Our bond was – and is – incredibly strong and raising her was pleasant, especially once we got through the first year of sleepless nights. Both of us (toddler her and mommy me) had a few memorable temper tantrums where I thought the world was coming to an end, but for the most part, she did not need much discipline. When you told her something, she usually listened, and we were consistent about enforcing the rules of the house. Congratulations to us!

But we had to try for a sibling for our precious one. Instead, we got two – a blessing for sure. And now – wow!! Monster mommy best describes how I feel most days. Exhausted, haggard, yelling in anger, always trying to find a way to carve out space for myself, to shave some minutes off bedtime so I can enjoy a quiet house. I clung to my firstborn, but now it’s more like “Don’t let the door hit you on the way out!”

Don’t get me wrong; these adorable kids are my life, literally. My days are filled with wonderment and laughter. I also know all the “right” ways to discipline children and control myself, having read many books and been trained and counseled by the coterie of therapists that have been in and out of our lives since our son’s birth. But here’s a confession: sometimes I am just too tired to do the right thing.

I am the stay-at-home parent – a great privilege — and even if I hadn’t quit my job in New York because we had to relocate to another state, I would have been fired for taking too many days off. One or other of the twins was sick constantly the first two and a half years of life. There were hospital stays for pneumonia and asthma attacks. Our pharmacist knows all of us by first name because we were there so often to pick up medicines. We know practically every nurse at our busy pediatric practice. I still jump every time someone coughs because I dread the outcome. What I’m trying to say is, my nerves are fried! I have burnt the candle at both ends and now there is no more candle.

I’ve realized something important, though. I’m actually not the nice person I thought I was. Having been raised by strict Catholic parents, I had always prided myself at the very least on being a “good” person. Not in the sense of following every commandment, but of being well-mannered, kind, generous, moral and civic-minded. You know, the type of person who would whole-heartedly embrace my disabled child.

ME, NOW: WITH THREE KIDS

© Brett Wilde, 2007

Only it did not come to pass that way. These four years have been the most challenging of my life emotionally. Do you know what it’s like to feel that maybe you don’t truly love your own child? I do. It’s perhaps the worst feeling I have ever experienced, like a vast darkness that swallows everything inside you. I don’t feel that way now (most days), but the road to accepting him and identifying my own flawed parent-self has been a long, winding one. We are not yet finished walking this path, nor I imagine will we ever be.

But at least I have some vague sense that we know where we are going. My son and me, both of us as human as human can be. Something interesting about the genetic anomaly of Down syndrome is that it manifests as humanity, writ large. My child with Down syndrome has stumbled more often than danced, resisted more than complied, been misunderstood more often than comprehended, and failed more often than succeeded.

This same description applies perfectly to me, and maybe to you too. Only for us, the fault would be our own, while my son is blameless. But let me ask this: have you let the beauty that is also your human birthright overtake you the way my son has let it overtake him? He has laughed more heartily than he has cried, felt and spread joy a thousand times more than sadness, let curiosity rather than fear rule his day and greeted every person who has crossed his path with a hearty embrace.

So no, I am not a good person and don’t say that I am. I am not quiet, gentle, patient and wise. I am angry, stormy, impatient and impulsive – just like my son! But I’m also strong, feisty, smart and tough. I will fight tooth and nail for what my kids need most. I will be hard on them if I have to for their own good and the good of society. I will not raise entitled children who think the world revolves around them, but neither will I tolerate people who try to pigeonhole my son into expecting less from himself because he has Down syndrome. My girls will learn manners of course, but I hope what they learn most of all is confidence. I want them to push back at the world in ways I was unable to do when I was younger, because I thought being nice meant being meek.

So the next time you get angry with your kids over small things, remember to apologize for the anger (not the consequences). Then remind yourself that it sometimes takes an angry woman to raise strong children.

Why Mommy Loved Therapy

You start the day with a picture chart, showing your developmentally delayed toddler exactly what is going to happen over the next half hour. Look! Here you are getting your diaper changed. Yes, then you get to have your milk and eat your breakfast. Then we’ll wipe your mouth — I know you hate that — and then you can play with your sisters. Oops, wait a minute, first we have to do these oral-motor exercises to strengthen your jaw. Open your mouth please, and bite down on this vibrating stick. Good! Now make a fish face until the stick pops out. Great! Let me massage your jaw while singing “Mary Had a Little Lamb.”  Oh, you wanted “Itsy Bitsy Spider?” OK….here we go.

©thehighernest, via Flickr

A few minutes pass. “Itsy Bitsy” has now been sung 6 times. Mom is in agony. Child makes sign for “again,” and says “again.” Again.

Exercises finished, child must now clean up plate and put it in sink before going off to play. Oh, and he has to pick up the cup that he threw on the floor, just like he has been doing three times a day for the past 732 days, even though he is reprimanded each of those times and reminded of what to do instead, which is to place the cup on the circle that has been lovingly drawn onto his highchair tray.

This morning was made possible by the therapists who worked with our son for almost three years as part of the North Carolina Early Intervention program. They were the ones who came up with these great ideas for making life easier for our son, who has Down syndrome, and for us, his parents, who also have two other children: a daughter, age 6, and our son’s twin sister, age 3. (The oral-motor exercises I mentioned were part of a program developed by Lori Overland, SLP, a speech and feeding specialist who has become mildly famous for working to increase speech production and clarity in children with Down syndrome by addressing difficulties with jaw movements, jaw strength, and chewing and swallowing.)

Make no mistake, most mornings did not go like that — rather, they were a jumble of harried breakfast, harried mother and crazy young children. But on the good mornings, no, the perfect mornings, things could go like that. And as you can see, they were still far from perfect. They were, to put it gently, very busy. Of course, this is only my point of view. How did my son feel about all this? Well, he always loved his “lady friends,” but some mornings he definitely wanted nothing to do with the therapy itself.

For about two and a half years, I had the privilege of having a group of lovely young women therapists come into my house and work with my son — a physical therapist, speech therapist, occupational therapist and play therapist, also called a special educator. We also added a behavior therapist in 2011. Then he aged out of the program at 3 and started preschool in September, along with my other children — big sister going full time and little sister part time.

It has taken me almost this long to digest this transition and what it means, which is the absence of things.  The absence of brother and sisters fighting and crying nearly nonstop for hours; the absence of relentless morning activities, meals and schedules. The absence, most of all, of our beloved therapists. I’ve heard some special needs moms express pleasure at the thought of Early Intervention ending and not having a stream of people come into their house each week. I get that. I do. Feeling bound to the schedule, trapped in the house. But for me, those very minor inconveniences were far outweighed by my overall joy at having these incredible people right in my living room.

My teammates, helpmates, resident experts, colleagues in this strange new job they call full-time parenthood. In addition to the incredible task of helping us help our son reach his potential, they were also my shoulders to cry on, cheerleaders for all my children (and for me), resolvers of sibling warfare and gentle advice givers. Imagine if every stay-at-home parent had a nice lady come to the house and say in a very relaxed cadence that the parent was doing a great job. And then, very subtly, also dispensed some simple advice for doing things better. When our time for home therapy was up, I cried. More than once. OK, more than twice.

I called them friends — and always will — though as friendships go, they were a bit odd, one-sided and more crucial for me than them. I’m not sure how many professionals want to walk into work to be greeted by a wild-eyed, bed-headed mom with three small children sticking to her like jellyfish and who has little idea what to do with them. But our therapists never seemed ruffled when that’s exactly what they got.

While of course they were teaching my son the step-by-steps of sitting, standing, talking, eating, listening, and a gazillion other things large and small ending with “ing,” they were also teaching me. To be patient, to be persistent, to be flexible, to be creative, to take it easy (even on myself sometimes). Everyone with a young child should have a therapist to support them. Or maybe just people like me should, neurotic worriers who can’t seem to do the simplest tasks correctly even though they somehow managed to plan trips to Europe and land big-sounding jobs in the heart of Manhattan. People who now spend their days feeling bad for roadkill, especially flat turtles who could’ve never, in a million years, made it across a well-traveled roadway. Maybe there should be a test when you have a kid, and if you’re too sappy, you get a therapist to toughen you up.

How do you replace all that? You don’t, I guess. You just move on and hope for the best. So here’s me, hoping for the best.

What I’m really trying to say is: see you around ladies. Let it not be long before our paths cross again. Oh, and thanks for saving my life.