Category Archives: Special Needs Kids

Things I Have in Common with the Duchess of York

1) We are both ClubMom bloggers. Did you notice? In the sidebar? There’s a new name in the MomBlog lineup: the Duchess Diaries. Sarah Ferguson—that’s right: Fergie—has joined the club. She is going to blog her adventures as she tours several countries for World Children’s Day to raise funds for the Ronald McDonald House Charities. (See #3.)

2) We have both made public appearances at the Country Glen Shopping Center on Long Island. Mine was a booksigning at the Barnes & Noble, and Fergie’s was (I think) at the Weight Watcher’s there.

3) We are both big fans of the Ronald McDonald House. I’m one of those people whose burden was made lighter, more bearable, by the existence of the sanctuary that is the Ronald McDonald House. And not just once: many, many times. When Jane was first diagnosed with leukemia in 1997, the RMH next door to her children’s hospital was the only place I could go to grab a shower. For nine months—nine!—I slipped over to the House a couple of times a week for a hot shower and a snack. The folks who ran the house always had fresh-baked cookies waiting on the counter, and there were large refrigerators stocked with milk and juice and all sorts of other things.

Families who were staying there long-term would cook dinner in the communal kitchen, using the groceries provided by the House staff, and everyone shared the leftovers. The House was a place of refuge from the overpriced fast food available in the hospital lobby, a place to do laundry, a place to meet other moms and dads and children who were going through rocky times themselves.

Rose was born in the summer of 1998, months after Jane had finished the high-dose, in-patient part of her treatment and we were back at home in our Queens apartment. But just four days after Rose’s birth, Jane spiked a fever and had to be re-admitted. She developed a serious case of pneumonia and wound up spending two weeks in the hospital. Two weeks! I felt torn in two. I was nursing a newborn and couldn’t leave her, but how could I stay away from my little Jane?

Up to that point, I had slept beside her in her hospital bed for every night of every admission. This time, it was Scott who stayed with her at night. I couldn’t bear to be too far away, though. The nurses reserved me a room at the Ronald McDonald House. Tiny Rose and I spent our nights there, just across the parking lot from Scott and Jane. Every morning I hurried next door to the hospital and spent the day bouncing between Jane on the cancer ward and Rose in a small library room just down the hall, where the bighearted nurses had fixed me up a little nursery with a rocking chair and bassinet borrowed from Maternity. And every morning on my way out the door, the nice Ronald McDonald House manager stopped me at the threshold and insisted that I grab a bite of breakfast before I took up my post at the hospital.

You see, the House is more than just a place to sleep; it’s a place where the families of sick children are nurtured, just as they in turn are nurturing their little ones. Scott and I stayed at another Ronald McDonald House in December of 2003, when our Wonderboy was born and surprised us all by requiring surgery right away. My folks were at home with our girls, and Scott and I found ourselves back on familiar ground, even though now we were in a different state. The room itself was a comfort to me. It reminded me of ordeals we’d survived before, and helped me believe we’d get through this one all right too. Because the House was just down the road from the hospital, I was able to go back and forth to the NICU every few hours to nurse my baby boy, and still manage to squeeze in a little much-needed sleep.

Some families must travel great distances to reach a good hospital, and paying for long-term hotel stays could quickly put them into financial peril. The extenuating expenses of having a child with serious medical needs can be frightful. At the RMH, families pay a nominal fee if they can afford it. It’s far less than a hotel bill.

And the House is far more than a hotel. There is peace and cheer within its walls. There is rest, and hope, and help.

That’s why I’m so glad to know someone like Fergie is speaking out on its behalf, and I’m proud to be in her company here at ClubMom.

He’s Talking in My Sleep

My speech-delayed son is in loooove with his voice. Words! When you use them, people react! Things happen! Words are MAGIC! For example, when it is one in the morning and you are feeling lonely, you can say MOM MOM MOM MOM MOM MOM and your mother will come and get you out of your bed and bring you into hers. She will do this because there is already one baby sleeping in her bed and she doesn’t mind being bookended by another.

But then it is possible she will (foolish optimist that she is) attempt to go back to sleep. This situation calls for more words. HI HI HI HI HI MOM is effective, as is BABY SLEEPING! (Even if you pronounce this as "Gaygee ee-ee," she will know what you mean.) This phrase achieves highly satisfactory results. She will instantly be wide awake and will pay lots of attention to you, rubbing your back and possibly murmuring hush sounds to you which you can’t actually hear because you don’t wear your hearing aids in bed.

Another aspect of Word Magic is the power to make people laugh. This is an extremely intoxicating experience and you will be eager to revisit it as often as possible. CLEAN UP, you will shout at your sisters, and this will make them howl. It will also cause them to leap into action, and rooms will become spotless before your mother’s very eyes. This garners the bonus payout of much beaming and hand-clapping from all the women in your life. You will feel like king of the world and probably won’t realize that you are in actuality the court jester.

Sometimes, however, your magical words will cause laughter where laughter seems contraindicated. You don’t see what is funny about asking for your BRUSHTEETH. A fellow needs to brush his teeth, after all, and what’s he supposed to use, his BRUSHHAIR? And when getting dressed in the morning, you fail to see what is so doggone amusing about requesting your HAM. I mean, you’ve put on your shirt, and the next logical step is to put on your ham, right? Are you supposed to go around barelegged all day?

Women. Sometimes they just don’t make any sense.

Discipline and the Special-Needs Toddler

I’m going to throw this topic open for discussion, because I am certainly no expert here. I am learning as I go. (Which is pretty much the definition of parenting.) I know from talking to other mothers of kids with special needs or medical issues that it can be really challenging (understatement) to figure out what behaviors are caused by the child’s issues, and what has more to with age or temperament. Of course these things are never black and white; there is usually a variety of reasons for why a child is doing something you’d rather he didn’t do. Deciding how to address the problem is the big challenge.

I remember an incident from when Jane was two, during one of her prolonged hospital stays for chemo. Most of the time she was astonishingly cooperative during treatment, but on this day she was emphatically not happy. "Not happy" as in shrieking her lungs out in the middle of the hall. In a flash we were surrounded by about seventeen medical personnel wearing expressions of worry and alarm. Was she seizing? Had she pulled out her line? I remember kneeling beside Jane, looking up at the army of doctors and nurses, explaining to them that no, it’s just that she’s two.

What had happened was that I (gasp) said no to her. No, you can’t sprint down the hall when you’re attached to an i.v. pole. She was two years old and in the mood to sprint, and her tantrum had nothing to do with her illness at all. It could just as well have happened in a grocery store or at church. She just happened to be spending her toddlerhood in a hospital, and when toddler ‘tude kicked in, it happened in a place where the staff was trained to assume screaming and flailing of limbs indicated a medical emergency.

I can see how they made that mistake. These things are not always clear cut. My Wonderboy is a sweet, sweet child. But he’s also, shall we say, a bit rigid. And determined. That determination serves him well; after all, it’s what got him off the floor and onto the furniture. But he is two and a half, and his goals are not always quite as satisfactory, from my point of view, as, say, walking and climbing. And often I find myself navigating difficult and uncharted waters. If he’s doing something inappropriate, how much has to do with his issues (I sort of hate that word) and how much with his age, or his mood, or circumstance? That’s a rhetorical question, you understand. No one can answer it for me. The answer changes every day, with every situation.

But the challenge is consistent, and I think it’s a challenge faced by a lot of parents. Wonderboy grows daily more fluent in two languages: English and ASL. But there are many times when he refuses to use either one. He’ll sit in his chair and reach toward the fridge making totally obnoxious fussing sounds. This is not OK, I tell him. Use your words. Do you want some yogurt? I have my strategies for retraining this inappropriate behavior: I sign his choices (he can’t hear me when he’s fussing); I refuse to give him anything if he fusses for it. ("Inappropriate behavior gets you the opposite of what you want" is one of my basic principles of child-rearing.) Fussing that escalates to a tantrum gets him plopped in the playpen penalty box. (At least, it did until I packed the playpen away for house-showing. Now I use his bed.)

But during such lovely little episodes, of course I’m wondering how much of his behavior is bad habit in need of retraining, and how much is the big old frustrating communication gap that goes along with hearing loss, which will be less of a hurdle as he gets older.

I’m just using that scenario as an example of the kind of thing I mean. Before he was able to stand up, he’d sit and cry or shriek for someone to get him. Of course I felt sorry for him, stuck there, dependent on someone else for mobility; I couldn’t leave him crying on the floor. But neither could I allow him to think the way you get what you want is to scream for it. I had fears of raising an imperious, obnoxious little tyrant who thought his physical limitations gave him carte blanche to order people around, like Colin in The Secret Garden.

So day after day—hour after hour, it sometimes seemed—I worked with him, insisting that he sign "help" before I’d get him up. Sometimes I felt so mean. Sometimes it went on too long. Sometimes we had to BE somewhere, or one of his sisters needed me, and I had to just grab him and go—which, of course, is just the kind of inconsistency that delays the formation of the good habit. But little by little, we got there. He learned to ask for help. Nicely.

And I know he’ll learn to ask for yogurt, nicely. It just takes so much diligence on my part, and that can be exhausting—the need to always be focused, to be thinking about how I react rather than simply reacting on autopilot.

As I said, I know I’m far from the only mom in this boat. So I figured I’d open the topic to you all and see if it’s a subject you’re interested in pursuing. I’m not all homeschooling and fun learning stuff here; I’m special-needs kids too. (And also: large families. And: big scary cross-country moves. But I digress.) I would love to hear your stories and insights about raising kids who pose behavioral challenges on top of the regular challenge of being, you know, two years old. (Or three, or four, or five…)

If a Picture Is Worth a Thousand Words, How Much is This Video Worth?

Exactly two months ago, you shared our joy over this: a two-and-a-half year old boy who was finally able to stand up by himself.

Today we are celebrating THIS. That’s a long way to come in a pretty short time. Climbing! The furniture! It’s hard to believe he was the baby who had to wear splints on his legs to straighten them out.

Hundreds of hours of physical therapy? Priceless.

I Hear You, Boy

Yesterday morning, while I was stumbling around in my pre-tea haze, Wonderboy asked for a Signing Time dvd. He watched for a few minutes and then shouted, "MOM! Nee hee ai!"

Me: Um, what?

Boy (pointing at ear): NEE hee ai, Mom. Hee ai!

His tone was loud and patient, the way people in comedies shout at foreigners as if they are hard of hearing instead of non-English-speaking. Oh, right. Hard of hearing. The light bulb went off.

Me: You need your hearing aids?

Boy: (laughs)

He’s always been astonishingly tolerant of his hearing aids, but having him recognize that he’d enjoy his show more with them in was a very cool moment indeed.

Fun with FM

Wonderboy got his new ear molds last week, but he came home with only one hearing aid. The FM attachment on the other one wasn’t working right and the whole thing had to be sent in for repair. His FM system is a super-nifty piece of technology: a little silver doohickey (to use the technical term) attaches to the bottom of each hearing aid and picks up whatever is spoken into the little clip-on microphone that is the other half of the system. See, if I’m wearing the mic, my voice gets piped directly into Wonderboy’s hearing aid, louder and clearer than all the other sounds the aid is amplifying.

Hard-of-hearing kids in school use FM systems to help the teacher’s voice reach their ears above all the ambient noise. Here at home, we use Wonderboy’s FM to help him hear the soft speech sounds that otherwise elude him. The mic has a decent range, and it is extremely amusing to switch his hearing aids to FM and have someone in another room start talking into the microphone. The boy’s face will light up and he’ll trot off to locate the speaker, pouncing with a triumphant yell when he is successful in his quest.

"AIR!" he’ll shout, which of course means "Aha, THERE you are!" (As if I needed to explain that.)

But right now he’s only got the one aid. And when Scott switches on the FM and sneaks to the next room to murmur "I’m gonna get you…" into the microphone, Wonderboy is like a dog chasing his tail. He pivots to the right, because that’s the ear with the hearing aid in it. Daddy isn’t there, so the boy just keeps on turning. At about 180 degrees he starts to laugh, knowing the joke is on him again, but he can’t help it, he just has to keep on looking right and right and right.

Scott will be peeking from the other room, and the whirling boy will be too much for him. When he laughs his booming laugh, he gives himself away. Wonderboy’s spin is arrested and he books through the door to attack his daddy. Air he goes.

Goose Bumps

Holly and Jeff have a new son. They met Hank around 10:30 Eastern time last night. Holly says he is a boy “with the most infectious laugh and an incredible sense of adventure, whirling like there’s no tomorrow.”

“On the van ride home he was looking around. We hit some big bumps which proved to be worth a laugh. More Magnadoodle fun and by the time we were out of the van we were MaMa and Baba.”

So very cool!

Meet Hank: A Boy on His Way Home

I’m on the edge of my seat this weekend as my dear friend Holly, baker extraordinaire, travels to China with her husband to meet the little boy they are adopting. Hank is a charming six-year-old with albinism, and he won Holly’s heart from the very first moment she read about him.

Now Holly and Jeff are on their way to welcome him into their family and bring him home to meet his new big brother. She’s chronicling their adventures day by day so that all of us can share in the excitement of Bringing Hank Home.

Tell it to Me, Baby

Wonderboy has speech therapy today. It’s been a while (we’ve been on a break since Rilla was born in April) and I’m eager to hear what his therapist has to say. He’s made big strides in both speech and sign since the last time she saw him. Between this and his newfound ability to get up, he’s had quite an amazing couple of months.

Every now and then, though, I step back from my up-close-and-elated view of his accomplishments and recognize that as far as he has come, he still has a long way to go. When I wrote that post about the speech banana last week, I ended the first draft with “The speech banana? It doesn’t scare me” and later amended that to “The speech banana? We’ll get there one way or the other.” Even the revised version was nagging at me as not being quite what I meant, and I realized that it’s because of the difference between speech and comprehension, between expressive and receptive language skills.

In that post, in those sentences, I was talking about receptive language, what he hears, sees, and understands. His receptive language skills are excellent, given the degree of his hearing loss. He understands a great deal of what we say. Sort of. Yesterday I was unloading the dishwasher and I took out a pot.

“Pot!” I said, showing him.

“Ah!” he agreed—signing “hot.”

Um. Not quite, but I like that he was repeating what he thought he’d heard. He can’t hear the P, see, and I hadn’t signed along with my speech that time. He really needs the visual cues for comprehension.

Despite hitches like this, he really is doing beautifully as far as receptive language goes, gaining comprehension at a lightning rate. And that’s what I was thinking of when I said the speech banana, and where his range of hearing falls on the chart, doesn’t scare me. He may not hear all the sounds, even with hearing aids, but if he’s understanding as much as he is at age two, I really believe he’ll have total comprehension when he’s older.

His expressive language ability, however: that’s another ball of wax. Here again, I’m not worried about his being eventually able to express his thoughts in one way or another. He is already using a combination of sign and speech to communicate, and thanks to the gorgeous marvel that is ASL, he can tell me most of what a two-year-old wants to say. And then with verbal speech, he seems to be smitten. He loves to talk, spends much of the day practicing words. Without his signs to cue me, I probably wouldn’t be able to translate them: to know that “ah ah ee ah” is caterpillar and “eh-ah” is elephant.

“Watermelon,” I’ll say, signing it also.

“Ah ah eng!” he’ll shout triumphantly, believing that he is echoing me completely. His hand comes to his mouth, three fingers pointing up like a W, tapping his chin—”water”—and then he pokes the back of his hand with a finger, like tapping a melon. Watermelon. Ah-ah-eng. I gotcha.

So, yes, when it comes to his slow crawl toward verbal speech I am comfortable, but not complacent. I think we’ve got a lot of work ahead of us if he is going to manage some of these consonants that elude his ears. We play babbling games; I press his lips together and say “buh buh buh,” trying to help him catch the B. He laughs, touches my mouth, says, “Uh uh uh.” So far, that B is nowhere on his radar.

But oh how he loves to experiment with talking! His joy is infectious; you can’t help but grin.

“Amp Ha ain ow-hie!” he tells me, his flying fingers clueing me in to his meaning. Grandpa train outside. Yes, buddy, you and Grandpa saw a train on your walk, didn’t you? Two months ago. That ain made a big impression on this little boy.

Big impression on my heart, too.