Furthering the Obsession

The other day, we were playing with Lego-style building blocks, and I decided to further Buddy's interest in weedwackers (which he had talked about all day) by making something akin to a weedwacker for him to play with (until it fell apart, repeatedly).



He enjoyed it. A lot. (Note that I've never claimed to be artistic. I was actually quite proud of myself that it turned out looking like something in the neighborhood of a weedwacker. (And yes, our other son is playing with an empty box. Digging items out of the recycling bag is his idea of a good time.))

But then, my paltry attempt at a weed-wacking device was surpassed by something far, far better(there's probably a spiritual analogy in there somewhere, but I'm not going for it at the moment).

Buddy's aunt and uncle had ordered a play John Deere weedwacker for him (after reading the previous post on weedwackers) and it arrived later that afternoon.

He was beyond thrilled. And he couldn't wait to show his daddy when he got home from work.



He's been weedwacking my plants ever since.

(The play weedwacker actually makes a noise if you pull the string and push the button, but he doesn't like the noise it makes, so he continues to make his own weedwacker sounds as he mows down the houseplants.)

Buddy sends his most profuse thanks to his aunt and uncle!

That Child

So, you know how at any event showcasing young children, there's always that one child who can't be corralled, who isn't paying attention, who isn't participating nicely like the rest of the children?

Yes, well, that one is my child.

The other night, we went to a "graduation" party for Buddy's preschool class. It was mainly just the kids singing a few songs, saying the months and seasons of the year, going through the alphabet--you know, pre-K stuff. Most of which Buddy knows.

But he wasn't interested in participating. At all. You'll notice he's the only one not wearing a hat and not standing in line with the other kids.

He did, however, receive the "Best Hugger" award, which he then proceeded to demonstrate by giving out some more of his hugs. Can you count how many time he hugs someone in this two-minute clip (two of the people he didn't even know)? And can you see how uninterested he is in the whole thing?

 

(Have I mentioned that over-friendliness is byproduct of Williams syndrome? I'm really looking forward to the session on "Distinguishing Between Friends and Strangers" at the WS national conference we're attending in July . . . .)

At any rate, I really appreciate the patience and the genuine interest and caring his teachers have shown toward him this year. Mrs. Karla's twenty years of experience in working with kids and those with special needs have been invaluable in helping him--he definitely wouldn't be as far along as he is without the help and support he received through her. I'm so thankful the Lord let us to her little preschool, and I'm looking forward to having her continue to teach Buddy over the next few years.

Weedwackers

One of the characteristics of those with Williams syndrome is a tendency to perseverate on a topic. So I'm not sure if Buddy's current obsession with weedwackers is a byproduct of WS or if it's just him being a little boy with an avid interest in a certain item.
Whichever it is, weedwackers have become the thing he thinks about morning, noon, and night. For example, can you spot the weedwacker in the picture below?

He did. Immediately. As we were reading A is for Adam the other day, we came to this picture, and he said, "Look, a weedwacker." And we couldn't read any further because he needed to analyze the "weedwacker" Adam was holding. I didn't really have the heart to explain to him that what Adam used was not really the equivalent of the Husqvarna his daddy uses.

And, can you see the "weedwacker" in this picture?

He did. Actually, he vacillates between calling it a weedwacker and a vacuum. But weedwacker usually wins.

Weedwackers have also started showing up in the songs we sing. The other day, as Cubby and I were singing Old Macdonald had a ___, Buddy chimed in with weedwacker . . . with a zzzzzz here [he does a pretty good imitation of a weedwacker sound] and a zzzzzzz there. 

And weedwackers are also on the bus -- The weedwackers on the bus go zzzz, zzz, zzz.

I believe they were also in the Mother's Day song Husband tried to get him to sing on Sunday, Happy weedwacker to you, happy weedwacker to you, happy weedwacker, dear weedwacker, happy weedwacker to you.

As we were playing with Mat Man from Handwriting Without Tears, instead of making Mat Man, he wanted to make a weedwacker with the pieces.

And today, when I was listing the things I needed to get from the store, "Milk . . . bread . . .", he added, "Weedwacker."


The irony in all of this is that when he sees an actual weedwacker being used, he covers his ears and freaks out a bit. I guess it's more of a love-hate relationship.

So, what say you -- perseveration or just a boy being a boy?

I don't understand

A few weeks ago, my husband and I watched this video by a man whose son was born with multiple disabilities, including blindness. One of the points he made has really stuck with me. The Apostle Paul, in his letter to the Christians living in Corinth, writes about the unity we have in the body of Christ. While discussing how we all play different roles in the church, Paul says, "those parts of the body that seem to be weaker are indispensable" (1 Corinthians 12:22).

Think about that in relation to those with disabilities: those we consider "weak" are indispensable in the body of Christ. Paul, an amazingly intelligent and gifted man, considered those who are "weak" to be indispensable. Not just "a good part of the body that we're happy to have along," but indispensable. Meaning the Body of Christ can't function without them.

That's certainly a different mindset than what we hear from our culture today--a culture that teaches the disabled are burdens to be borne and frequently disposes of them while still in utero.

One of the ways those who are disabled contribute to the body of Christ is through what we can learn from them--compassion, kindness, patience. I've already seen this with Buddy. My friend Georgia tells me that she's talked to her daughter about Buddy and encouraged her to be compassionate toward him. This has carried over into the way her daughter treats other children in her life--she's reached out to a girl in her class with mental disabilities who needs a friend. Would we know what compassion was if we didn't have anyone on whom to show it?

I recently watched this video of Larissa and Ian. If you haven't already, take a few minutes and check it out.



Amazing video, isn't it? I appreciate their message of God's sovereignty and goodness in the face of such suffering and the way God has been glorified through their lives, but the video left me wondering why. Why would this girl give up so much to marry someone who could give, in return, so little humanly speaking? They weren't married -- or even engaged -- when Ian was in the car accident that caused his TBI, so why would she willingly choose to stay with him -- to marry him -- to pledge to be his wife for the rest of her life -- knowing what that would entail--when she didn't have to? He can't offer her what most men bring to the table -- the ability to provide for her, to be a strong protector . . . . And yet, she married him. . . . Why, indeed . . . .

And, I'm coming to realize, that this is where those with disabilities may offer us, as Christians, an even greater indispensable service. Those who are unable to do for themselves, who need help with the very basics of life, who can't contribute much if anything to a two-way conversation, offer us a glimpse of what we are like in the eyes of the God of the universe.

As I've been meditating on Ian and Larissa's story, feeling unsettled and wondering why, trying to make sense of their lives together, I've also been continually brought back to the realization this is the way Jesus has loved us. Me. I bring nothing to the salvation table -- the marriage beween Jesus and His church. Nothing. I am helpless, unable to produce any type of work in the sight of the Holy Creator that would make me acceptable to Him or worthy of His love. I can't provide anything that helps me along the narrow way to salvation. I have absolutely nothing to contribute to my salvation from sin.

 And yet . . .

When the kindness and the love of God our Savior toward man appeared,  not by works of righteousness which we have done, but according to His mercy He saved us, through the washing of regeneration and renewing of the Holy Spirit, whom He poured out on us abundantly through Jesus Christ our Savior, that having been justified by His grace we should become heirs according to the hope of eternal life. (Titus 3:4-7)

Larissa remembers the way Ian used to be -- before his accident -- and she longs to see him return to his former self and wants to be there along the way to help him. Because she loves him.

I suppose, in a way, this is a reflection of the way God is toward us. He remembers the way He originally created mankind -- innocent image-bearers full of His glory, full of life, full of love and peace. And He longs to see us return to that original state of perfect harmony with Him. And He has provided the way for us to do that through His Son. What love. What amazing, incomprehensible love. I don't understand it.

Thank God for His goodness in giving the indispensable weaker members to teach us of His great love toward us.

Wheels for Williams

This week (May 9) is Williams syndrome awareness week and there have been lots of events around the country this past weekend and today to raise awareness for WS and funds for the Williams Syndrome Association to help with research, educational opportunities, and scholarships for camps and conferences (among other things).
We went to an event today that was a bit different from the other events, which were mainly walks. We went to the first one two years ago, skipped last year (due to Cubby's arrival), and made it again this year. This event was a cruise-in (called "Wheels for Williams") with lots of older cars and things with wheels.

There was even a little hot-rod that Buddy tried out.

And Buddy and Daddy checked out the cars and the fire engines.

A fun time was had by all. We're looking forward to next year!

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.

Not just a statistic

The God of the Bible is a God of order. He created the universe in an orderly fashion and endowed it with laws to follow (laws of life, laws of chemistry, laws of physics, laws of mathematics . . .) so that it all works together for His glory and our good. As His image-bearers, we reflect Him in our attempts to order and classify things. In the math problems we solve. In the probabilities and statistics that we put together.

One of the questions people often ask after hearing about Buddy's diagnosis of Williams syndrome is, "What are the chances that your next baby will be born with WS?"

The standard answer is, "Because WS occurs from a spontaneous mutation on one of the gametes (i.e., neither my husband nor I are "carriers" of the disorder), we have the same chance of having another baby with WS as we did with Buddy -- about 1 in 10,000."

We like to toss numbers like this around -- one in ten thousand babies are born with Williams syndrome, one in one hundred babies born to older women will be born with Down Syndrome. Or, to put it another way, Buddy is one of about 30,000 people in America living with WS today.

And yet, it can become easy to forget about the One who created so that 2+2 always equals 4 when we're in the middle of figuring out the answer to questions like these.

I was reminded of this when I read this testimony of a pastor who found out his son would be born with spina bifida. (If you haven't already, take the time to read his testimony or watch the video--you will be blessed. And you will need a tissue.) In his letter to his unborn son, Pastor Josh says, "You are not a statistic."

The reality is that each child is created by God just the way He wants him or her to be. As the Lord reminded Moses, “Who has made man’s mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I, the LORD?" (Exodus 4:11)

And when Jesus answered His disciples' question about the reason a man was born blind, He didn't say, “It was neither that this man sinned, nor his parents; instead, he's just that one in a thousand [or whatever the "statistics" are] who are born blind." Instead, Jesus said the reason was "so that the works of God might be displayed in him." (John 9)

You are not a statistic. Buddy is not a statistic. Cubby is not a statistic of "healthy" children. My husband's youngest sister who was born with Down syndrome is not the one in one hundred statistic. They are each the result of the handiwork of God, who created them to bring glory to Himself and for our good. To display His good works.

It seems to me that there's a danger in relegating children with disabilities to being the result of a "statistic" in that we then go on to classify their lives according to statistics -- there's a high probability that he will have signficant learning disabilities, that life will be difficult for her, that he will live in pain for his whole life. And we no longer see each baby born as an invidual created by God with the potential to be full of His giftings.

And, I would think, the even greater danger with the "statistic mentality" is that it then becomes easier to take the lives of these "statistics" while they are still in the safest place possible for them -- their mother's womb. And we end up with even sadder statistics like this one: more than 90% of children with Down syndrome are killed before they are born. Because their parent didn't want a statistic.

So how should I answer when people ask the question above? Maybe something more along the lines of this . . . "Buddy is not a statistic. He is a blessing to us from God who created him just the way He wanted him to be. If God chose to give us another child with Williams syndrome, we would receive him or her with thanksgiving, just as we would a healthy child."