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Archive for the ‘sign language’ Category

The shoes should have been our first clue.

After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park.  The pre-departure routine is always the same: “Okay, buddy, time for some clean pants.  Bring your toy and let’s get clean pants.”  “Clean pants first, then socks, MAFO’s and shoes.”

Nik is always eager to perform this routine; he loves to go out with us.  Lately, he’s begun to put his orthotics on by himself —even getting them on the correct feet.  He was just beginning to clamber onto the sofa, where I sat waiting with wipes and pull-up in hand, when Niksdad brought over his socks, MAFO’s and shoes.  The scream which issued forth from my heretofor sunny child was unlike anything I’ve heard except when he is in extreme and urgent pain.  It was the kind of sound which makes my heart race and causes me to drop everything and come running in an instant, certain I will find my child covered in blood.

There was much wailing and gnashing of teeth (to put it quite mildly) until we figured out the problem: the shoes.  Perfectly good, serviceable Nike’s which Nik has worn on many occasions though not for sometime.  (His other Nike’s were so filthy from repeated outings to the park— the laces were nearly black— that I insistedwe wash them last night; they were still in the laundry closet, slightly damp.)  I put the offending shoes on the floor at my feet while Niksdad went to get the still-damp shoes.  Apparently, even that was too close for those awful shoes; Nik screamed and jumped off the sofa, grabbed the shoes and ran to the entertainment center to put them on top.  That’s were they’ve been sitting for weeks now; it made perfect sense to Nik’s sense of order.

Once Nik realized the “correct” shoes were going on his feet he calmed down.  In fact, he seemed quite eager for our outing.  Off we went on our merry way.  “We’re going to get ice cream first, then go to the park. Ok buddy?  Ice cream first, then park.”  I repeated that phrase, like a mantra, as we drove.  Nik is usually pretty good about changed routines or routes as long as I tell him the sequence several times over.

I should have known that the shoe incident had my precious boy already wound too tightly.  As soon as I turned right at a traffic light where we normally turn left, Nik’s tenuous balance shifted and the tempest began.  I talked to him in soothing tones as I drove.  “It’s ok, sweetie, we’re going to get ice cream first then go to the park, remember?  It’s ok.  You’re ok.”  All the while, Niksdad held on to Nik’s feet so he couldn’t injur himself (or us) with his kicking.  I drove with one hand on the steering wheel and one hand holding Nik’s sweaty fingers, gently squeezing to give him some proprioceptive input which I hoped would calm him.

We parked right next to the entrance (God bless our disabled parking placard!) and waited for the storm to abate.  When Nik didn’t seem to show signs of calming, Niksdad said tersely, “This isn’t going to work, let’s just skip it.”  His frustration level was, understandably, rising with each howl and each kick which landed on the back of his seat.  Not realizing that Nik was already overwrought and wound too tightly, I insisted we at least get out of the car and try

There have been times when simply getting out of the car has shifted Nik’s attention enough that he is able to calm down and we end up having a decent outing.  I also felt very strongly that we neededI needed— to not be held hostage to the autism.  We spent the first two years of Nik’s life sequestered away from everyone and everything because we had to protect Nik’s fragile immune system.  We’ve spent much of the last couple years isolated from nearly everyone and everything except the occasional family outing.  At some point, I felt, we just have to say “Damn the consequences!” and try —just try— to be a part of the very society in which we want our boy to thrive.

Today was not the day for that.

We never made it to the ice cream or the petting zoo.  We pulled into the parking lot at the park and Nik fell apart again.  By this time, he was so overwrought he couldn’t tell us anything.  “Are you hungry?” Nik signed please so we offered him a bite of his sandwich; he thrust it at me and screamed.  “Do you want to go play in the park, sweetie?”  He simultaneously signed please and shook his head no.  I started to hum Mary Poppins songs to calm him.  It seemed to work until I stopped.  The wailing began again.

We drove home to nurse our wounded hearts and try to figure out what our boy was telling us, what he needed.  As we pulled into the driveway —like magic— the tears and tantrums abated and the happy singing began.

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Nik has now had lunch and is a very happy camper —singing Mary Poppins and Signing Time songs to his toys, playing with his alphabet puzzles.  We may attempt the outing again in a while —or not.

It’s so hard, trying to find the right balance between stretching Nik’s boundaries and honoring his needs.  Between giving my child what he needs and giving myself what I need.  Trusting my instincts and listening to the voice in my heart that says “We have to try…”  The lines are hazy and constantly shifting —like walking on a sand dune in a headwind. 

I believe we are at a crucial point in Nik’s communication development:  the more he knows he can make himself understood —and the fewer tantrums as a result of that success, the more intensely frustrated he becomes in those instances where he cannot make himself understood.  The extremes seem to be farther apart and I feel stretched to my limits straddling the chasm.  But I’ll write more about that another time —after I mull it over some more.

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In our continuing quest to help Nik learn to communicate his wants and needs in a manner which is far less annoying than whining or crying more universally understood, we’re building on the small sign language vocabulary he already possesses. I may have mentioned in a post or three about how rapidly Nik’s skills are developing since we took him off the Lamictal, yes? And I may have also mentioned a time or twenty that his appetite —rather his willingness to taste things —is increasing at an amazingly fast rate which, if unchecked could impoverish a small country, no?

Nik long ago learned the sign for cracker which is made by flexing your left arm at the elbow and tapping the elbow with the closed right fist. It comes in handy at feeding therapy —about the only place he will deign to eat goldfish crackers anymore; his palate has become more sophisticated since he’s no longer taking the seizure meds.

Nik’s latest culinary favorite seems to be small pretzel rods —”dipping sticks,” actually. They are the right size for his hands and he can carry one around nearly everywhere he goes while he plays. Quite convenient, that. Unless you have an aversion to sweeping, vacuuming, and mopping the floor at least once daily? But I digress.

Since there doesn’t seem to be a universal sign in ASL for pretzel, we’ve been using the same sign for cracker and then saying the word pretzel for Nik. It’s simple and it seems to work. But, Nik being Nik, he came up with something all by himself yesterday; it happened so fast that I wouldn’t have believed it if Niksdad hadn’t been there as a witness.

I was in the kitchen starting to get his dinner ready when he walked over to the gate singing and smiling. When Nik knew I was looking at him, he signed cracker, please. “Oh, would you like a pretzel, Nik?” I asked. Without missing a beat, he signed please and quietly uttered ge gah.”

Kid’s got me wrapped around his little finger like, well, a pretzel, I swear!

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Talk about a lesson in trusting yourself. In the five weeks since Nikolas took his last dose of seizure medication, we have witnessed the following:

He’s begun showing a voracious interest in food again after two years of not eating; he wants everything from our plates and wants to feed himself. He’s not actually biting and chewing yet but he is making tremendous progress with pureed and thickened foods. And he’s tolerating all kinds of new textures such as meat (!!), breads and bagels, tortilla chips, slightly chunky mashed potatoes, mashed broccoli, cookies…all kinds of things he never showed any interest in before.

He no longer wants to sit in his Kimba chair to get a full tube feeding by pump unless he is either in the kitchen while I am making dinner —and getting to share it with me while I cook —or sitting at the dinner table with us. Breakfast and lunch are now broken up into two rather large bolus feeds as Nik sits in his little Elmo easy chair. He even follows directions to pick up Elmo and “bring it over here” (usually near the sofa so I can sit and feed him) then makes a big production out of sitting down and patting his tummy to indicate he’s hungry. Yeah, he’s turning into a first rate ham.

He comes to the gate to tell me he is hungry by signing eat; if I ask him does he want apple or cracker (pretzels) he will indicate his preference by signing the right one, followed by please. He now signs please anytime he wants something. Then, I ask him to show me what he wants. In the last five weeks, Nik has learned the signs for book, ball, and watch. Well, technically, he’s learned the sign for time —as in Signing Time —but he likes to chew on my sport watch so I’ve taught him how to ask for it with nice words. I still have to prompt him some on that specific one but he’s really catching on fast.

He can also sign all done, open, shoes, and diaper now. And, very often, he will sign “ball, please” or “book please” completely unprompted when he wants a toy. This week, Nik actually stood in front of the armoire, patting his chest for please and said gah, gah.” You’d better believe he got that book right away!

He’s begun putting on his own shirt, helping to pull up his pants —and zipping them!—and he can pull up his socks, put on his orthotics, and shoes; I help him with most of those things but he does a pretty good job without me, too. He can brush his hair, feed himself with a fork and spoon, and consistently asks for more when he wants it.

My child —the one who is visually impaired, didn’t walk until 15 months ago, and has cerebral palsy —has nearly mastered climbing the stairs —all by himself while holding a toy in one hand — opening regular door knobs, flipping light switches, and can get the lid back on his bottle and screw it shut 7 out of 10 times. He’s figured out how to climb slanted rock walls, small ladders, slide down slides in every possible position, and is learning to not only steer his little bike by its handle bars but is beginning to figure out the concept of pedaling —again, with minimal assistance from us. His motor planning abilities continue to amaze us as does his keen awareness of nearly everything going on around him.

We used to have to encourage him to stand up to walk to the car because he was always so focused on the ground right in front of his feet. Now we have to cajole him to continue walking because he is so busy picking flowers, picking up leaves, chasing squirrels, ringing the doorbell, running to the end of the driveway. It’s pretty cool; annoying sometimes but cool none the less.

Did I mention the daily kisses and giggle-fests with both Mommy and Daddy? The way he takes my hand to walk to the car and signs please to tell me he wants me to come to the park with him and his Daddy? Or the way he rides his bike from the family room to the front door because he heard us say the word park? Or the way he warbles in his beautiful little vibrato to ask me to sing opera for him? And when Miss Rachel is singing on Signing Time, he now grabs my arm and makes me stay to sing along. His current favorite is the “ABC” song (aka “A is for Alex…”). He always sings that when he is happy, happy, happy. And when I sing the last part that goes “X is for x-ray and Y is for yesterday; Z is for zipper and now we are doooone! Hooray!” He collapses in a fit of the giggles and claps wildly for more.

And when he’s sitting alone in his chair and watching Signing Time without me (a rare occurrence I can tell you), I peek around the corner from the kitchen to watch as he flexes his fingers and waves his hands along with Miss Rachel. I don’t know what he’s signing but he’s definitely trying to sign more words.

Tonight, as we were killing time waiting for Daddy to hurry home so we could put Nik to bed, I discovered that Nik recognizes NINE letters of the alphabet —A, B, E, M, N, X, Y, and Z. He can correctly identify them by pointing! We haven’t even begun to work on letter recognition so I know it’s all from the videos and singing. Well, and the fact that my kid is a freaking genius! I was blown away!

So when some doctor tells you “Your child won’t…” or “Don’t get your hopes up,” don’t you dare sell your child out and buy into that crap defeatist attitude. Sometimes all it takes is a belief that it can happen, the determination to create the possibilities —the right environment, the right people— and the ability to love your child more than you fear their labels and limitations.

“There are two lasting bequests we can give our children:
One is roots, the other is wings.”

~ Hodding Carter

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Lately, I’ve noticed that Nik has some difficulty with specific control over individual fingers; he still does not point and has some difficulty isolating his index finger to poke things with any consistency. Not surprising is that he also has trouble turning his wrists outward. He can roll them in toward each other just fine. I don’t know if this is a permanent feature due to his cerebral palsy or if it’s something that can be helped with OT. Only time and effort will tell for sure.

Meanwhile, it does make for some interesting sign language. As with most kids who are learning signs for the first time, Nik tends to modify many of the signs to suit his physical ability. Children tend to learn the signs which come in toward their bodies sooner or easier than those which reach away from them. For example, more— which is signed by tapping your thumb and fingertips of both hands together —is easier for a child to sign than play which is signed by folding the middle three fingers down so the thumb and little finger make a “Y” then gently rocking them back and forth.

But I digress with my rudimentary sign instruction!

Nik’s picked up lots of signs since we began using the Signing Time videos several months ago; rather, I should say he’s picked up lots of words. The signs, well, many of them look kind of similar. I like to think of them as multipurpose signs. I don’t know if Nik signs this way because it’s physically easier or if it’s mentally easier —he already knows the one sign and “the other is sorta kinda similar…” but not really. Here are Nik’s equivalents:

Please = Yes
More = Shoes
Book = Open
Share = Show Me
Bye-Bye = Play

He also knows how to sign eat, apple, cat, and cheese (gotta love that Silly Pizza Song!). He understands many more signs such as sit, stop, no, drink, wait, ready, up, down, outside, want, diaper, toy, car, and others.

I’ve been working with him to learn some signs for other toys he has so he can be more specific in his requests; it’s challenging when he stands at the armoire and looks up at that basket and simply signs please. So it was with great delight that I watched him express a desire for a different toy this weekend —a ball —one he doesn’t yet have a sign for.

This request was unusual because he doesn’t’ generally care to play with balls, though this particular ball holds him in thrall. I started to try to teach him the sign for ball; basically you cup your hands loosely and touch the fingertips together suggesting the shape of a ball.

Again, Nik had difficulty manipulating his fingers so he improvised. Here’s his newest equivalent:

Ball is now the same as…

Cheese!

That’s a mighty big cheese ball! (Cheese is signed by mashing your palms together and slightly twisting them.)

Not to be confused with a big cheese of another sort…

(Taken 10/03/08 at this event.)

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It’s been a very slow process for me to get around to reviewing the newest Baby Signing Time offerings, Volume 3: A New Day and Volume 4: Let’s Be Friends. It’s not because I didn’t want to; it’s because every time I put the DVD into the player and started to watch it with Nik he would get very upset. Nik, as many of my regular readers know, is a huge fan of Signing Time. He is not, however, a huge fan of anything which remotely smacks of change from the expected routine. It’s one of his non-negotiable autistic traits and we just sort of roll with it as best we can. Some days it’s smooth sailing and others, well…(shrugs shoulders).

As it was Nik had a difficult transition to the “new” Signing Time opening and the “new” format with Hopkins when we bought the first set of videos. We’d been checking them out of our local library; that was a feat since our state library system only has one copy of four different videos in their collection. Yes, that’s right; one copy of each and there’s a very long waiting list.

So, I finally was able to make the time to sit at my computer and watch Baby Signing Time all by myself. Okay, right there is a ringing endorsement, folks! The videos are so good that I was perfectly willing to watch them alone. Of course, I also enjoy watching some of the Disney Channel offerings so maybe that’s not such a ringing endorsement after all. You decide.

I must disclose up front that I watched these videos with a definite bias. I tend to filter many things through the lens of my son’s various learning challenges which include difficulty with fine motor control and difficulty processing a lot of busy or complex visual information. He is very much an auditory and tactile learner, preferring to learn by doing. His first attempts at communication were actually humming the tunes of very specific songs I used to sing to him to do things such as changing his diaper or brushing his teeth. The musical element of the Signing Time videos is sometimes critical to Nik’s ability to learn and recall the signs he has learned. If I hum a snippet of the song relating to the sign he wants to recall he is able to do so.

On the whole, I loved the Baby Signing Time videos. They are very different in tone and feel from the Signing Time series with which we are now so familiar in our house. I will say up front that I won’t buy them for use with my son simply because the transition would too traumatic at this point. However, if I were just starting out with signing and Nik were a bit younger? I’d own them all.

Overall, I think the videos are well structured and geared toward the pre-preschool age group. The overall look of the Baby Signing Time videos is simpler, less active or visually cluttered and the emphasis is on building concepts as well as vocabulary. In the songs, I think Rachel’s signing is more focused on the specific signs being taught. My experience of the songs in the Signing Time series is that they are richer in signing additional vocabulary; they can be a nice way to pick up some new signs as you go. In Baby Signing Time, the simplicity serves a good purpose in keeping it uncluttered or visually uncomplicated for small children who have shorter attention spans and who may not be able to follow along quite as quickly as an older child.

The repetitive vocalization and signing, combined with both real life and cartoon representations, and layered with music, can reach a multitude of learning styles —auditory (both spoken and sung), tactile, visual (both literal and representational images). The introduction of the cartoons interspersed with real life examples can actually help children make the cognitive leap to symbolic representation. This is a very critical step for many non-verbal children as so many early communication systems —especially in schools —rely on some form of picture exchange system.

In Volume 3: A New Day, I think some of the words and concepts may not be as meaningful or motivational to small children. That said it does give parents a way of introducing and layering language to describe a child’s environment. I don’t know that I would expect a small child to tell me about the sun or rain —I know many preschoolers who struggle with some of those concepts; my son can no more tell me what the weather is like outside but he can tell me he wants his book. None the less, I suppose it’s sort of like advanced vocabulary words; nice to aspire to and enough of a stretch to keep advanced learners interested.

I really like how Rachel plays dress up in the different segments. At first, I thought it a bit hokey, but after thinking about it I can see that for many children it can encourage creative play. Also, I think many young children will think it’s silly or funny and that, too, can be a huge reinforcer. Let’s face it; some people remember jokes better than straight facts! I’m not sure which I liked best —Rachel in her giant sunglasses kicking back in the Adirondack chair or Rachel with the bug antennae and being all squirmy and squiggly! It’s very cute.

I found the content of Volume 4: Let’s Be Friends more applicable on a day to day basis at a younger age. I think there were more of the words most commonly used in a daily routine —names of some common foods, how to start to express yourself, opposites, and feelings. I almost wish the two volumes had been reversed. Many children are learning about feelings, foods, and toys before they are going out into the world and learning (or expressing things) about the weather. Really, it’s a minor complaint in the scheme of things as I think all of the material presented in the videos is wonderful and engaging.

Another complaint —and it may have simply slipped past me, though I tend to notice these things more since Nik was born —is that it seemed to me there was significantly less use of overtly disabled children in the Baby Signing Time videos than in the Signing Time videos. I don’t know if this was an intentional choice or if it’s simply the way they were edited. I saw lots of children with Down syndrome but I did not see any children with things like braces or wheelchairs or even any obvious motor impairment. I think it’s important to expose young children —and their parents —to children with disabilities as just part of the normal course of daily living. I know that this is equally important to the folks at Two Little Hands Productions so I was a bit surprised at the omission.

Finally, I do have to say that I have a real love-hate relationship with some of the songs Rachel uses at the end of the videos. I love them because they are wonderful songs rich with meaning. I hate them because they are loaded with meaning for me as a parent of a child with multiple special needs. I cannot listen to “Show Me a Sign” without crying a river. The words remind me of all the things my child is not yet able to express in spite of his obvious intellect and desire to do so. Also, I think knowing a bit of the history behind songs such as “Tiny Hands” makes them more poignant.

The third offering on the DVD I was sent, Elizabeth Barrett Can Read is an inspiring account of a little girl with remarkable communication skills who began reading at the age of thirteen months. It should be noted that her mother, Katy Barrett, is a speech pathologist and that she was not actively teaching Elizabeth to read. Katy acknowledges that communication comes easily for Elizabeth; she states “Obviously, she’s got some special abilities to be able to do this.” Katy also says she believes the visual nature of signing helped Elizabeth connect the symbols (signs) to the letters she saw on screen and to the meaning of the words. I can’t help but wonder, though, if Elizabeth is possibly hyperlexic. Clearly, Elizabeth is a very strong visual learner with an ability to recognize letters and patterns of words and language. While I think Elizabeth Barrett is absolutely not your typical young learner, I think there can be little doubt as to the power of layering language in so many ways. As Katy says, there are so many children who don’t have communication tools and sign language can be a bridge for them.

The nice thing is that it’s never too late to start.

See clips from from the newest Baby Signing Time videos here:

Volume 3: A New Day

Volume 4: Let’s Be Friends

Visit Signing Time to find out how you can get your own Signing Time or Baby Signing Time products today.

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Some toys are not meant for general thrashing and throwing or being ridden over by Nik’s Little Tykes tricycle. Those toys reside in a large white basket which sits on top of the battered white armoire in the family room; the name really is so much more glamorous than the furniture ever was. Still, it has served us well in housing, first, office supplies in the days before Nik was born, then Nik’s myriad small medical supplies through the years. It now does double duty —triple, I suppose —holding a smattering of medical supplies, some kitchen items in the bottom drawer, and the basket perched on top.

It won’t be long before Nik can reach the basket and hook his slender fingers into the openings and topple it, sending books and small toys raining down upon his head. I watch his daily attempts to do just that and know it won’t be long before he no longer needs to ask for my assistance. Today, however, he gleefully grabs my hand and drags me to the armoire.

Patting his chest in a fervent request for something currently out of his ever-lengthening reach, Nik smiles and waits. I’m not sure what he wants so I ask him to “use your words” and “show Mommy what you want;” it is of no avail. I run through a mental inventory of what items usually reside in the basket. His current favorite is not there; I wonder if that’s what he wants —in spite of his having just tossed it over the gate into the kitchen.

I offer him the insert for the item; he smiles and pats his chest with greater urgency. We are playing a non-verbal game of “hot or cold” and my only clues are his face and his hand gestures. After an interminably long minute of this game, Nik suddenly changes his tack. He looks at me pleadingly, puts his palms together and then fans his hands open away from his body; this is how he signs open. Many of his signs have multiple meanings so I assume that he is, in fact, asking for his book.

I ask him with both words and signs, “Do you want your blue book?” Nik grins and pats his chest in the affirmative. I lean across the gate to retrieve the book. Nik squeals in delight and then tries to put the insert into the base.

Praising him for his good communication and helping skills, I reiterate in words and signs that Nik now has his blue book. “Book. Book,” I intone for him, slightly emphasizing the “k” sound so he doesn’t confuse it with another word such as “boot.”

Without missing a beat, Nik looks at me. “Gah. Gah,” he says with the identical inflection that I have just used. With a smile, he takes his beloved book and settles onto the sofa to read and play.
I’m fairly certain we’ve just experienced our first intentional verbal communication which doesn’t involve tears or hysteria. I could get used to this!

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Nikolas is still in the process of learning how to communicate choices. Tough for a nonverbal little guy with lots to say. It’s not a precise science; more of an inexact, interpretive art which we practice every chance we get.
A typical encounter usually goes something like this:

Me: Nik, do you want to watch Mary Poppins? Can you tell Mommy yes or no?
Nik: (No response.)
Me: How about Signing Time? Can you tell Mommy yes or no?
Nik: (No response.)
Me: (Holding out the cases for the respective DVDs) Nikolas, can you show Mommy which one you want?
Nik: (Takes one of the cases from my hand.)
Me: Oh, you want Signing Time? Okay.
Nik: (Throws Signing Time to the floor and takes Mary Poppins from my hand.)
Me: Oh, okay, you want Mary Poppins instead?
I put Mary Poppins in the player; as the opening credits begin, Nik wails in frustration and flings the case to the floor.
Me: (sighing) Nik, do you want Signing Time instead? Can you use your words to show me, please?
Nik: Pats his chest to say “Yes, please.”

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Today…
Me: Nik, do you want to watch Mary Poppins? Can you tell Mommy yes or no?
Nik: (No response.)
Me: How about Signing Time? Can you tell Mommy yes or no?
Nik: (No response.)
Me: (Holding out the cases for the respective DVDs) Nikolas, can you show Mommy which one you want?
Nik: (Takes one of the cases and very deliberately presses it against his lips in a kiss.)
Me: (Startled) Oh! You want Signing Time?
Nik: (Points his right index finger into the palm of his left hand —sign language for “show”— then pats his chest to say “please.” As soon as Rachel appears on-screen, Nik begins to clap wildly.)
You could have knocked me over with Yankee Doodle’s feather!

Happy Independence Day, indeed!

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It’s amazing how quickly things can turn around here; One day we’re up, the next we’re down and then we bounce right back up again! It seems that my recent weeks-long bout of sluggish energy and really poor concentration— to the point that I have felt the need to nap after working out and couldn’t remember what I’d said or done mere hours before— and a few other symptoms, including the muscle cramps and migraines I had at the end of last week, may have been the result of a fairly significant potassium deficiency. With my efforts to lose weight (pretty much at a standstill right now) and my working out quite vigorously, it seems I don’t consume enough potassium in the normal course of my day to sustain the amount I actually sweat out of my body.

Good thing my husband, the LPN, is such a smart guy! He caught it and bought some potassium supplements yesterday. After taking a few doses throughout the course of the day, most of my symptoms cleared up by mid afternoon. By this morning I felt more “normal” than I have felt in a few weeks! I even had a great workout and felt completely revitalized afterward. Wow. Now I know the signs to watch out for —and what to do, too!

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As I’ve mentioned a time or two, Nik has become enamored of Signing Time videos. The progress he has made in the short time we’ve been watching them is, to me, nothing short of amazing. (Don’t believe me? See here, here, or here!) Lately, Nik has been making such clear efforts to communicate —including asking for help— and having fewer and fewer instances of extreme frustration which lead to potentially self-injurious behaviors. Of course, I’ve learned many more signs than Nik but he watches and takes it all in —even if he cannot replicate the signs he sees. We’re learning how to adapt and helping Nik find ways to make choices and needs or wants known; whenever possible, I ask him to “use your words” or “show me your words” as I model them for him.

We’ve progressed to auditory and visual scanning in many cases, too! When I know what Nik wants, I will play a game with him and present— with both words and signs—a variety of choices including the one I know he wants. When I get to the one he wants, Nik will often sign “please.” Then I will say “Oh, you want Mommy to open the box?” for example. “Can you use your words? Can you show Mommy how you say open?” All the while I am showing him the sign so he can imitate me. When he has shown me the sign for what he wants, I ask Nik to use his “nice words.” [One of the ST videos has a great song about Please, Share, Your Turn, My Turn, and Thank You.] He almost always signs “please” or “thank you!”

Much to my surprise and delight, Nik has recently begun imitating the intonation of certain words. When I am expecting to see him signing something, lately Nik has instead been making the tonal sounds of the word as he simultaneously signs “please.” I’m still getting used to the idea that I have to listen more closely to the specific sounds he is making and put them in the right context.

The layering of language in the videos is so effective; the music and printed words, the singing, the video modeling by both adults and children —of all walks of life and abilities, is so powerful that I often find Nik gesticulating wildly in an effort to try to communicate! He knows he is “signing” in his own way. I must confess; it’s adorable to see though it’s not always easy to interpret!

I don’t think it’s an exaggeration to say that these videos have changed our lives significantly. I’ve also not made any mystery of my desire to own the series but they are not cheap!

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Back in May, I filled in at the last minute for a parent-presenter at a conference which focused on how to build successful relationships with and work with practitioners —primarily educators, therapists, and medical professionals— to advocate for causes relating to our children with special needs. It was an honor to have been asked and I wasn’t sure what I had to contribute; the professional I was partnered with had things well in hand. But, I willingly stepped up and served where I was needed. It was a tremendously enlightening and fulfilling day; I was surprised to find out— after the fact— that I was to receive a stipend! My past experience with stipends for this sort of work has been that it’s really a small amount which might cover the cots of gas. Imagine my surprise last week when I received a fairly sizable check in the mail!

I’m not talking about a buy-a-new-wardrobe kind of check but something in the neighborhood of a buy-a couple-of-nice-outfits check.

I finally decided to buy this; it arrived today! I threw in a copy of this, too; it makes me weepy and emotional sometimes!

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When I was a much younger woman —in my wild and impetuous days as a single gal in NYC— I had a friend, Anne. Anne was roughly a dozen or so years older than I and was a single mother raising two young pre-teen boys. Though Anne was far from perfect —she reveled in being right about things (and she usually was) — she had a heart of gold and a righteously protective streak a mile wide. She would offer me the shirt off her back, the food in her cupboard, and a soft place to land when my world came crashing down around me. She was also the first to stand by a friend in need —“fighting the good fight”— or to teach that same friend how to stand up for herself. We lost touch a number of years ago through simple neglect; our paths diverged so greatly after the birth of my son, the geographical distance between us, and who knows what else.

Anne always had a habit which annoyed me to no end; every time we would go out to eat, she would ask me if I wanted to “join the sharers club.” She always wanted to share whatever we each ordered; I, on the other hand, never wanted to share. Call it miserly, greedy, thrifty —I was, after all, a single woman living alone and pinching pennies in a very expensive city— but I really got annoyed. Anne never took it personally though. She would simply smile and say, “Aw, sweetie, you don’t know what you’re missing. One day you’ll realize the joy of sharing.”

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Amid the clatter of emptying the dishwasher —Nik’s laughter echoing through the playroom and into the kitchen— I hear the sound of uneven footsteps and the banging of a heavy object as it bounces along the floor. I turn to see Nik dragging one of his new toys over to the kitchen gate. As he hoists his little cash register toy up over his head, I fly to the gate to keep the toy from crashing to the floor. Nik stops mid-toss and laughs. “Are you all done, buddy? Do you want Mommy to take your toy?” I should know better than to ask a question like that; Nik doesn’t have the communication skills to answer such a query.

I take the toy from him and begin to place it on the armoire near the telephone —still in sight but safely out of reach. Nik begins to vocalize something and gestures at the same time —tapping the fingertips of his right hand into the palm of his left as if he’s making a “Tee.” My eyes widen in surprise. Am I seeing what I think or is it just a coincidence? I’ve seen Nik do that gesture before but assumed he was just copying the video and didn’t really understand the concept.

“Sweetie, do you want to share the toy with Mommy? Is that what you want? You want to play with Mommy?” Nik emphatically begins to pat his palm against his chest —his universal sign for “Yes, please. I really want it.” How could I possibly resist such an entreaty? Picking the toy up from its high perch, I carry it to the sofa and ask Nik to join me. He squeals as he races to the sofa and settles in so close to me that I have to put my arm around him so I don’t accidentally elbow him in the face as we play.

For fifteen minutes we share. We take turns and sing songs. Nik makes free with his kisses —a rare treat lately since he’s becoming such a Daddy’s boy. When he’s had enough, Nik signals to me that we are finished playing by picking up the toy and placing it in my hands. With one final kiss, he slides off the sofa in search of new entertainment. I sit dumbfounded.

Though I’ve not thought of her in a long time, Anne’s image comes to mind. I smile and realize I now understand her gentle words of many years ago. As usual, she was right.

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Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else

Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else

Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten
Natasha Bedingfield ~Unwritten
On top of the recent escalation of Nik’s mystery pain, he’s begun having a really difficult time lately at PT and OT. We have no idea why; I’ve been with him nearly every single time and if I wasn’t then Niksdad was. Nik used to laugh and clap and squeal with glee when we pulled up in front of the office. For the past three weeks though —whether in conjunction with the escalation of his pain episodes or for some other reason entirely —Nik has had complete meltdowns each time we go.

Things progressed from Nik screaming and crying as soon as we walked through the door —and proceeding to then thrash and slam his head on the (carpeted) concrete floor— to having a complete screaming, crying meltdown in the car as soon as he realized where we were going (based on the route we took). On Tuesday of this week, Nik lost it shortly after we left home; it’s a six mile trip each way. We decided to discontinue his playgroup because it got to be so bad; I think he was freaking out some of the other moms and one or two of the kids, too.

Anyway, yesterday was no different —at first. As soon as we pulled out of our neighborhood and onto the main road, I saw Nik’s face scrunch up in the pre-meltdown expression. Since he’d been in a great mood thus far all morning, I knew it wasn’t from pain; I started to distract him by singing songs from Signing Time videos —over and over and over. It worked to not only distract him but it got him laughing and clapping and trying to sing along. (You should hear his rendition of “…Signing Time with Alex and Leah, come and play…;” it’s utterly adorable!) I thought I had found a magic solution —until I pulled into the parking lot.

Interestingly enough, Nik cried and screamed but he cooperated with me. He didn’t kick and thrash and roll on the ground as he has done in the past few weeks. He sat down in a chair at my request, took off his shoes and coat, and then ran screaming…to the playroom! There were many bumpy and hysterical patches but, overall, Nik did really well. Miss D, our awesome OT who is now fully certified in sensory integration diagnosis and techniques, followed his lead and found ways to turn each struggle into a new game. By the time we left, Nik was smiling and happy. He spent more time playing one-on-one with Miss D and really paying attention to her —her eyes and her face especially, and he even gave her a kiss when we left! Then he turned around and wanted to go back inside again! So we did that for a little bit; I really wanted our leaving —and Nik’s experience of entering the building, too —to be joyful for him.

I am happy to report that it worked. In fact, Nik spent the entire rest of the day being giddy and giggly, affectionate and funny, and as cooperative as any willful toddler can be in one afternoon. In short, the rest of the day was delightful! But it gets better…

We had a feeding therapy session in the afternoon; Nik’s nap was cut short —always a crap shoot —and it was a decided change in routine which I wasn’t sure Nik would handle well. You guessed it; I was wronger than wrong! I think I can say without reservation that this was his best session ever. EVER.

Maybe it was our visit to the neurologist on Thursday, followed by the bloodletting —er um, visit to the lab— for a multitude of tests. Or perhaps the moon and stars were in perfect alignment. Whatever the reason, Nik was a total superstar with Miss M. To quote Miss M, “Nik’s the best speech therapist I’ve ever met!”

You see, Miss M has been working with Nik to teach him the necessary oral motor skills to actually take a bite of food. Progress has been slow. It’s only been very recently that Nik would even tap an apple wedge against his top teeth, let alone let any other food come into contact with them. He still guards his lower teeth with his tongue even when he’s sipping from a straw. We’ve been doing exercises with his chewy tubes to strengthen his masseter muscles as well as to try to reduce some of his oral defensiveness.

The game plan has been to gradually move through stages:

1. accepting the tube near the back of his jaw, followed by;
2. five consecutive bites on the tube at he back of his jaw on each side, then;
3. inserting something crunchy like a potato stick inside the tube and repeating the bites at the back of the jaw to introduce the sensation and sound of crunchy solids.

The idea is that Nik would gradually tolerate the sound of the crunch —which startled him terribly once before— and allow him to get the tiniest bit of dust-like crumbs on his tongue. This would then lead up to:

4. taking multiple bites on the tube and crunching the contents and then;
5. voluntary biting in the front of his mouth, followed by;
6. biting and crunching along the full range of his mouth.

You can see where this is going, right?

If I told you that we’ve only recently mastered step two, you might understand why Miss M and I were both utterly speechless yesterday when we introduced step three and Nik took off like a champion thoroughbred and raced through the entire process —all the way to step six —completely independent of any coaching or input from Miss M! Multiple times.

As if that weren’t enough, Nik showed off his new growing sign language vocabulary for us; he can now sign eat, apple, please, thank you, more, shoes, and cat. He is close to mastering share, cheese, and bye-bye. Yesterday, we added another emerging sign to the list, too! But let me back up a bit, first.

Nik’s current manner of asking for things is to grab our hands and direct us toward the object he wants; sometimes he wants us to perform a task such as opening the buckle on his lap belt or taking off his shoes. We are trying to pair Nik’s non-specific requests with at least an acknowledgment. For example, when Nik drags my hand toward his lap belt I will say “Oh, you want Mommy’s help? If you want Mommy to open the buckle show me ‘please.’ Sign ‘please’ for Mommy.” As I say this I am also showing him the signs for open and please. (Nik doesn’t sign yes so we use please in its place.) When he signs please by patting his chest, I open the buckle and praise him.

The most important element is that we make Nik acknowledge and confirm what he wants. He is becoming much more consistent with this. When and where we can, we try to introduce new signs. So when he “asked” me to open his lap belt yesterday at the end of therapy, I asked him to show me open —fully expecting that he wouldn’t but that we would make a few attempts before we defaulted to please. You could have knocked me over with a feather when Nik responded with a sign which is clearly his rendition of open and then followed it with the intonation of the word as well!

Yes, I got teary.

Meanwhile, Miss M needs to completely rewrite all of Nik’s feeding goals and some of his speech goals. His augcom devices have finally been ordered and should be in soon. At this rate, I suspect Nik may outgrow the need for those specific devices pretty quickly. We are going to start working on photo cards soon, too.

In other areas, I think I’ve mentioned before that Nik is beginning to really cooperate with simple directions such as sit down, give it to me, give Mommy a kiss, come here (not as consistent but I think that’s more about willfulness!), and the like. He is also making big strides in self help skills such as putting on socks and shoes —with help, of course. Nik also practices taking off and putting on his own shirt nearly every chance he gets —sometimes with very humorous results.

So, as Kristen reminds us in this eloquent post, our children’s stories —indeed, all our stories —are still largely unwritten. Nik’s will, I suspect, have multiple plot twists and more than a few cliff-hangers before it’s finished. Just when I think I am in control of the plot, my main character throws me a curve. But then, I wouldn’t enjoy the ride half as much without a little excitement, right?

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