Time and Effort

When my sister and I were still in school, my mom went back to school to get her teaching degree accredited. For one of her assignments, she had to write and illustrate a children's story--she chose to base hers on my sister and me and called it, As Different as Night and Day. It was about a momma bear who loved each of her two cubs, even though they were each very unique and different. Sounds like a sweet story, doesn't it? I still think she should dig it up and get it published.
I've been reminded of that story with my own boys and the differences I've seen in them. I realize that no two typically developing siblings are alike but  there are more pronounced differences between a typically developing child and one with special needs. And the differences I've noticed between Buddy and Cubby can be summed with two words: time and effort. The time it takes to learn something and the amount of effort it takes to master a skill.

Those things that Cubby has learned to do, almost overnight, took Buddy much longer to learn:

Cubby was walking by nine months -- Buddy walked at 15 months
Cubby started "talking" when he was about 10 months -- Buddy said his first word at 27 months
Cubby started climbing stairs almost as soon as he started walking -- Buddy is still working on climbing up stairs without help
Cubby can throw a ball at at 11 months -- Buddy didn't really start throwing things until late into his twos
Cubby started using his pointer finger at about 8 months -- Buddy didn't learn to use his index finger to point until he was 13 months

 

Cubby is able to pick up new skills much more quickly than Buddy has. And he does it with much less effort. Cubby is, almost, self-taught in a lot of areas -- not because I'm not interested in helping him, but more because he decides he wants to learn something and doesn't wait for me to teach him. I came out into the kitchen one day and saw him standing on the top step of the small step stool we have for Buddy to climb on to watch us cook. He'd climbed those steps without my ever having shown him how.

When Buddy learned to climb, it was a much slower process of showing him, repeatedly, how to place his feet and where to put his hands. It was the same with walking. We continually stood him up on his feet, holding his hands, and encouraged him to walk between us. It was a months-long process that we worked on with his OT and in our time with him. We put a lot of effort into teaching him to walk and he put a lot of effort into learning the process himself.

When Cubby decided he wanted something, he pointed at it. He didn't have any trouble isolating his index finger. He just did it. With Buddy, we continually showed him how to close his hand and point with his finger. That, too, was a months-long process. He finally learned how to do it when he got a toy that played music by pushing a small button -- small enough that only one finger could work it. He wanted to hear the music badly enough that he eventually learned to push the button on his own, after we'd shown him over and over how to do it.

Cubby picks up two things -- one in each hand -- and bangs them together. We spent quite awhile showing Buddy how to clap two items together. How to transfer one item from one hand to another. How to stack blocks. Basic things that you wouldn't think would require much effort to do.

It was the same with talking. Cubby started babbling when typically developing babies do--without our help. He repeats most of the sounds we say to him without effort. When we were outside yesterday, he pointed to the neighbor's basketball, said "ba," and walked over to it, wanting to play with it.

Buddy never really babbled and coaxing any type of sound out of him was like pulling a cedar tree through the eye of a needle. With his speech therapist, each week, we'd talk about the sounds he'd made -- He said an s sound this week! I heard an F last Tuesday! He made an X sound yesterday! We checked off the letters in the alphabet one by one, except that he also wasn't putting them together into words. We put a lot of effort into teaching Buddy how to talk -- and, in fact, we're still doing it. He has speech therapy once a week throughout the school year, and we're still working with him on forming sentences, articulating what he wants and needs, and talking about life in general.

Having Cubby around has highlighted for me how much effort Buddy has needed -- and will continue to need throughout his life -- to learn and master new things. It has helped me see that I really do need to be much more purposeful in teaching Buddy things -- I can't expect him to just "get it" like Cubby does. Although, and here's the important point, I can (and should) expect him to "get it" eventually -- with much time and effort -- as he's already demonstrated by all the things he's already accomplished. (And this serves as an encouragement to me as we're in the middle of working with him on learning to write and draw.)

And, here's the other important point, even though there are vast differences between the amount of time and effort each takes to learn, we love both Buddy and Cubby very much and are so very glad the Lord has given both of them to us.

Another breakthrough

One of the speech goals on Buddy's IEP is "increase vocabulary to enable three- and four-word sentences." He will echo pretty much anything we say or sing and occasionally he'll say things on his own (not necessarily clearly), but today he said what may be the longest and clearest sentence I've ever heard from him -- six words!

Granted, his phrase was, "Wanna watch TV on the computer," but nevermind that part. He actually said what he meant and meant what he said -- and it was understandable.

And so, because he'd done such a good job, we did, in fact, watch TV on the computer, meaning we watched some YouTube videos of, in this case, tricycles and unicycles. Oh, and a few airplanes.

The advantages of speech therapy

From the time we enrolled Buddy in First Steps immediately after his WS diagnosis, we wanted him to have a speech therapist (since there are known speech delays in those with WS, we wanted to be proactive in getting him help). Sadly for us, speech therapists are few and far between in our area. We had one for a few months last year but she quit First Steps and so we were back on the waiting list.

Finally, in June, we got another speech therapist. Mrs. Jane came highly recommended from our OT, and I've been happy with her work with Buddy and her suggestions for us in working with him. One of those suggestions is to offer him more chewy and crunchy foods (e.g., those round Snyder's pretzles) to strengthen his jaw muscles to help with his speech.

While I was grocery shopping, I picked up some Rice Krispies, thinking I'd make some Rice Krispy bars to fulfill the "chewy" part of therapy. This afternoon, we melted the marshmallows, added the cereal, and let them cool. And then we ate some.

Who said therapy can't be fun -- and delicious?

A-vo-ca-do

I've mentioned before that there are known speech delays in people with Williams syndrome. Buddy hasn't been an exception. From what I've read and heard from other parents of those with WS, 28 months is the average age for speech to begin emerging. And it's been within the past few months that he's begun babbling more and trying actual words.

His first clear word, besides mama and dada, was bubble, which he uttered in the bathtub as Husband was blowing bubbles for him to catch (that was in February, 2011). Since then, he's been trying other words and sounds. Oddly enough, he seems to go after the longer words--such as avocado and alligator--instead of words such as car or blanket.

I took this video as he was going through the box of avocados my uncle recently shipped to us.

Apraxia

A.P.R.A.X.I.A. Apraxia. It's a good Scrabble word.

This has been a busy week for us, filled mainly by a plethora of doctor visits. Today's was to the speech pathologist at the hospital for an evaluation of Buddy. We had him in speech therapy for about 5 months last year and then lost ST when the therapist quit First Steps. A developmental therapist has been coming since September but she works more on helping him communicate with signs than getting him to actually form words.

I set up the evaluation at the hospital because I've heard they have a fairly intensive program that helps kids with a variety of speech and language pathologies. Although he has about 10-15 signs that he uses and has recently started saying "ma ma" and "da da," I want to be sure we're doing everything we can for him and that something other than the known speech delays with WS isn't also hindering his expressive language abilities.

The speech pathologist was very kind and thorough. She spent about 1.5 hours playing with Buddy, asking questions and jotting down notes on her intake form. She'll be sending us her report in a few weeks. At the end, she said that based on what she has seen, it's possible that Kieran has a form of developmental speech apraxia. The good news is that there are several STs at the hospital who specialize in treating apraxia. So now we wait to see if our insurance will cover the therapy and for a therapist to have an opening in her schedule.

I'm very thankful that we live nearby such a good hospital and have so many services available to us.

PT and DT

On Friday we had a visit from a physical therapist. Although I had thought Buddy was doing fine with his gross motor skills, the evaluators at his yearly IFSP (individual family service plan) marked him 1.5 standard deviations below average. I was a bit surprised but decided to add a PT to his lineup just to keep tabs on him.

So it was she who came Friday morning. After watching him for an hour, she determined that he was doing mostly what he should be doing for his age and suggested that a monthly visit (instead of weekly) would be fine. I agreed, and so we'll see her again at the end of October.

The next visitor came a few hours later. Our speech therapist recently quit First Steps and since there are now only 2 STs servicing our area, we're again on a waiting list. (Buddy still isn't talking, so ST is definitely something I'd like to keep up with.) In lieu of a ST, our service coordinator suggested adding a developmental therapist, who supposedly can also help with speech.

And so the DT came Friday afternoon to spend an hour with Kieran. To be frank, I found her a bit annoying (mainly in the way she talked), but for the sake of continued therapy in this area, I'll keep her around. For awhile anyway. Our geneticist also mentioned at a recent appointment that he could refer us to the speech pathology division at Children's, which I may follow up on.

Speech therapy, finally

We've been on the waiting list for a speech therapist for Buddy since September, 2009. There are known speech delays in those with Williams Syndrome (although once they begin speaking, apparently, language becomes a strength), and we wanted to give him every advantage. Speech therapists are rare in our neck of the woods, and so it was only just last week (May, 2010) one called to set up an appointment to begin his therapy. From now on (or at least until he's 3), Tuesdays will be reserved for speech therapy with Lori.

Words he understands

Wednesdays are OT day for Buddy. He enjoys spending time with our OT.

When he was first diagnosed with WS, I had visions of him as an adult unable to do even the most basic of personal care -- tie his shoes, feed himself, brush his teeth. Perhaps a bit extreme but some of the videos we'd seen and articles we'd read described this type of behavior in older adults with WS--able to play a concerto on the clarinet but unable to tie a pair of shoes.

However, I've been encouraged by his progress over the past few months--he's working on brushing his teeth by himself and can use a fork to feed himself scrambled eggs. Still can't tie a shoe, but I'll let that go for awhile. He's also almost ready to walk by himself and is learning to use a sippy cup.

We've been watching the Your Baby Can Read DVD for the past few weeks and that seems to be helping him with language acquisition. He's not reading, per se, but he is recognizing that words mean something. The following videos are a few of the words he knows.







Basic, yes, but I'll take it.

First OT visit

Today the Occupational Therapist came for our first session. Buddy was more interested in giving her hugs than in doing what she wanted him to do. However, she left some simple suggestions for things to try with him throughout the week, so we'll work those into our routine.

He had a nice time with the OT. She also suggested that we add a speech therapist, so we'll check into that, as well.