11 special needs parent New Year's resolutions

I resolve to try harder to encourage my child's independence. It's hard when you're so used to feeding, dressing, bathing and doing all sorts of things for a kid with physical challenges, but if you give in to helping every time he refuses to do it himself, he'll take that much longer to learn (and that much longer to detach from you).

I resolve to quit putting myself last and pay more attention to me, which will make me a better mother and my roots less apparent, too.

I resolve to be less bothered by the stares. Must get a t-shirt that says, "I assume you're staring because he's so cute."

I also resolve to keep on educating and enlightening people about my child. Sometimes, people stare because they can't see the child behind the special needs.

I resolve to keep coaxing my child past his boundaries. Perhaps he's scared of new places and experiences, and the screechfests cause heart palpitations (mine), but if I don't persevere he'll never know how great that movie, that show or that restaurant can be. With headphones, of course.

I resolve to spend more time helping my child practice the sounds the speech therapist recommends.

I resolve to not feel guilty on the days when I don't help him practice the sounds the speech therapist recommends, or do any of this stuff, because I am a mother of the human variety and there is just so much I can do.

I resolve to try harder to help my child understand that the world doesn't revolve around him, even though he requires a lot of attention.

I resolve to give my child more chores, ones he can successfully complete. Way to teach responsibility, encourage confidence...and get more dusting done.

I resolve to keep my cool when I'm on the phone with the insurance company rep making yet another inquiry about lost claims. Well, mostly.

I resolve to think less about the future—as in, worrying about what it will bring for my child. I can only try my best day by day; I cannot control how he will turn out.

The true joys of special needs parenthood

 

is attending your child's school holiday concert and seeing him eagerly peeking in the door. You can still picture him standing there five years ago and sobbing. Now look at him. Comparing your child to other kids is never good, but comparing your child to his own track record can be one of the most enthralling things in this world. You know how far he has come. And it is making your heart do flip-flops.

is sitting with a group of parents who are just as excited and proud as you are of their kids. There is real comfort in being among people who totally get it, in real life and in cyberspace, too.

is the special smile your child gives you, only you.

 is watching your child sing a word, raise his hands, do a dance step. Every purposeful movement is its own marvel, because you know just how much effort went into it.

is being surprised by an accomplishment you've never seen before, like a tune plunked out on a keyboard.

is seeing how proud your child is of himself. You are always there to be his cheerleader, but it's all sorts of awesome to see him believe in his abilities.

is relishing a child's sweetness and cuteness, as any parent does—all the worries, stress and responsibilities temporarily forgotten.

is crying tears of happiness for a kid who keeps amazing you every single day.

Raising kids with special needs: The American cheese milestone

It's how milestones happen with Max lately: I'll suddenly notice him doing something new and incredible, only it's not something you'd ever read in one of those child development books or newsletters. It's not a milestone that would necessarily impress anyone else, or one most people could notice. Last night, for instance, I celebrated the American cheese milestone.

Max likes a slice at bedtime. "Eeeess!" he'll say, and I'll dutifully go downstairs and get a slice along with a couple of paper towels. Max eating cheese in bed has traditionally been a messy activity; he'd down some, but pieces would fall out of his mouth. His food retention has been an ongoing challenge: Because of the cerebral palsy, his tongue and chewing aren't so coordinated (CP has a way of messing with various muscles).

Back when Max was a baby, he had trouble nursing because of that. When I started giving him a bottle, a lot of it would dribble out and we'd go through a gazillion burp cloths every day. Once he was on solids, he'd spew those out, too. Feeding him one jar of food could easily take a good half hour. Spoon in. Scoop up what came out. Spoon in. Repeat, repeat, repeat, repeat.

I'd known that Max was going to have issues with movement, possibly with speech and other delays. The feeding issues blindsided me. Eating? My baby, already facing so many challenges, was going to have issues with eating?

I'd never heard of a baby who wasn't able to keep food in his mouth. It was just too much.

Somehow, though, we got enough food and milk into Max; he was quite the chubster. Often, Dave fed him; unlike me, he didn't get distressed by what was going on.

It took years for the eating issues to improve yet they did, slowly but surely. Suddenly, Max wasn't dribbling as much oatmeal out. Suddenly, more spaghetti was staying inside his mouth. Suddenly, ice-cream wasn't an ordeal (and, man, he was determined to keep as much of that in as possible).

Drinking liquids has been trickier. We thicken them up with a scoopful or two of Hormel Thick & Easy. But you can't put the powder in water, and sometimes drinking a glassful makes him cough. "Small sips, Max, small sips," I'll say.

Back to the cheese—oh, that beautiful, gorgeous piece of American cheese. I was sitting in Max's bed last night. I usually hold the cheese for him, because when he does he grasps it so tightly it mushes up. As usual I split the piece in half, folded it over, and placed it on the back molar so it was easier for him to chew, just like the feeding therapist once taught me.

Max was happily munching away when it dawned on me: He wasn't spitting any of it out. No flecks of yellow on his pj's, no bits on the comforter. It stayed in his mouth.

S-C-O-R-E!

It was a small thing, but it was a big thing.

It was not unexpected but it still seemed astonishing.

It was one more eff-u to the cerebral palsy.

It was the sustenance that feeds my hopes for Max.

I didn't say anything to Max, didn't squeal, didn't do a happy dance. I just celebrated the American cheese milestone in my heart.

Image: free-extras

On the road of special needs parenting

NOW

"Eeeyah yah ah eeeyah ah ah AH!" says Max.

I'm driving our minivan, and Max is babbling in the backseat. I listen, happily, occasionally peeking into the rearview mirror to watch. I am not sure what he's saying, but there's intonation there and he sounds like he is having the most awesome conversation with himself. He seems to love the sound of his voice.

I sure do; for years, I never thought I'd hear it.

THEN

Max is 18 months old and I am driving him to aquatic therapy, one of the 12 sessions of therapy he gets every week. My boss lets me work at home one day a week and on Friday mornings, Max and I head to the pool at a local children's hospital. He doesn't like it so much, but the warm water helps relax his stiff muscles.

"AH!" says Max from the back seat. "AH! AH!"

I am astounded. Max barely makes any sounds at all, none of that babbling I've heard from babies. The stroke he had at birth caused some serious brain damage. His brain is not like other kids'. That, I know. But I so want him to babble.

I am giddy. This could be the start of the babbling. He is so going to prove those NICU doctors wrong, especially the grim-faced geezer who told my husband and me that we could sign a Do Not Resuscitate if we wanted to.

For years afterward, Max doesn't make a single sound in the back seat.

NOW

"Max, do you want to get ice-cream later?" I ask from the front of the car.

"Eeeyah!" says Max. ["Yeah!"]

I think that perhaps "Eeeyah!" is one of the best words ever. It's Max's version of "YES!" and "HELL, YEAH!" He says it so enthusiastically every time and more importantly, he says it. He has, of course, also mastered "NO." He likes to say it emphatically: "Noooooooooo." It was Max's first word.

I never knew "No" could be such a welcome word.

THEN

I've just come from an appointment at a doctor's, and I have to pull over to the side of the road because my eyes are full of tears. I am tired. Tired of spending all my free time with therapists and doctors. Tired of the hopelessness and despair and thinking that my life will never be OK again. Tired of not getting to just enjoy my cute toddler with the chubby cheeks, bright eyes and big smile. Tired. I sob for a while, Max sleeping in the back seat as cars whiz by, and then I pull out and drive on.

NOW

"Arr wah!" says Max. We've just passed a car wash, one of his favorite activities in the whole wide world.

"You want to go to the car wash?" I ask, rhetorically. Because I know the answer.

"EEEYAH!" says Max.

"How many times do you want to go to the car wash?" I ask, again knowing the answer full well.

"Oooooh," says Max. Two.

I love talking with my boy. We go through the car wash twice.

THEN

Dave is driving and I am sitting in the backseat with Max. He's three. I'm reading that Dr. Seuss book Hop On Pop to him.

"Hop!" I say to Max. "Can you say 'hop?'"

Max looks at me.

"Ha," I say. "It sounds like that! Ha, ha, ha. Can you say 'Ha'?"

Max looks at me.

My heart slumps. Nothing's working—not all the speech therapy, the flash cards, the endless talking to him. The speech isn't coming. Not even sounds are coming. I put the book down on my lap and stare bleakly out the window.

NOW

I'm at home and Dave calls from the car, on speakerphone; he and Max are out running errands. I hear Max in the background, babbling. Dave and I talk, and he hangs up. Then he calls back.

"Max wants to say hello," he says.

"Ohmmmy!" I hear. "Ohmmmy!"

It is the most beautiful word ever.

If the doctors could have told me back when Max was a baby that at 9 years old he wouldn't be fully able to speak, I would have been out of my head with sadness. A 9-year-old who couldn't talk? A 9-year-old still babbling?  

Now, I am only grateful. I'm thrilled that Max has the desire to communicate, thankful for his progress and ebullient to hear him playing with sounds. No matter what lies down the road, I know he will be fine... and so will I.

This is exactly what I want to tell moms who are lost in the fog of grief: It will be OK. Whether your child talks as you consider talking or does it in his own way or doesn't, whether your child walks as you consider walking or does it in his own way or doesn't, whether your child learns as you consider learning or does it in his own way, you will both be OK.

No matter how much pain and despair you feel now, slowly but surely you will get to this place called "acceptance." Because as your child develops, your heart and mind will progress, too:

You will be less sad. Even though at times the hurt will still come your way, it won't be as intense as it once was.

You will quit peering into the rearview mirror of what-might-have-been.

You will stop constantly worrying about the delays and missed milestones and realize that kids with special needs travel at their own speed. There is no race.

You will stop freaking out about what lies ahead and learn to see the wonders of your child.

This is the road you will travel as the parent of a child with special needs. And things will get better as you go along. So much better.

That, I promise you.


iStock/DNY59

Dubiously sane things I have done concerning Max...perhaps you can relate?

I was e-mailing with a mom over the weekend; her baby had a stroke at birth, like Max. Until recently, she had measured her baby's head every three days because she worried about microcephaly, a condition in which a head is abnormally small (it indicates the brain isn't developing properly). She joked about getting committed to the psych ward, and I knew just how she felt because I've done that.

For the first year of Max's life, I was obsessed with his head size. It was small, very small. Still is. I'd regularly measure it and dread visits to the neurologist. When Max needed winter hats, I'd buy two sizes: one in the age-appropriate size, one in infant size. Inevitably, only the infant hat would fit, even when he was three. But I kept buying the age-appropriate size hat, as if I could will his poor, sweet little head to fit into it. At some point I finally quit freaking about Max's head size—as long as he made good progress, I decided, that was all that mattered. And he has, thankyouGod, he has.

Over the years, I have done some wacky stuff related to Max, driven by anxiety, fear, terror, love. For the first few weeks after Max was home from the NICU, I slept on our living room couch with him resting on my chest. Literally. I felt I needed to be that close to him to make sure he was still breathing. I can still vividly recall the day my boss at the time called to check in on me. At some point, I mentioned that Max was sleeping on my chest every night. Awkward pause. "Oh! Is that safe?" she asked, logically. I must have seemed so strange.

I have also reached into Max's crib as he slept to massage his hands in the hopes of loosening them from the tight grip of cerebral palsy, stared obsessively at other kids' hands in the mall to see just how open/functional they were in comparison, spoken to Max in different accents to see if he'd notice and, once in a fit of desperation, ate an entire jar of baby food (bananas) to show him how to chew right. Dave has been my partner in special needs lunacy; when Max was little, he used to gargle water to distract Max while we were feeding him so I could get in some food.

OK, here it is, your chance to share the out-there things you've done. That way, they can haul us off all at once to the loony bin!

Hahahahahahahahahahahahahahahahahahahahahaha!!!!!!!!!!!!!!!!

istock/Dennis Cox