Horse fail

One of the suggested helps for those with special needs is hippotherapy -- working with a therapist and using horses for therapy. It's something I've thought about for Buddy since he's been on a few smaller horses in the past and seemed to enjoy it.

I have the video to prove it.

Exhibit A. Riding a pony at a dairy farm we visited while in Florida over Christmas. No worries, right?

So I was understandably eager to find a nearby place that provides hippotherapy to get him started (he's still showing evidence of low muscle tone and lack of coordination in his movements--things which hippotherapy is supposed to address). I checked around and found a place not five minutes away (and believe me, there's not much that's just five minutes away from us).

A few Fridays ago, I took the boys to meet with the owner. Buddy was looking forward to "seeing some horses," but when we got there, we didn't get the chance to actually get close to the horses since it was a bit rainy. So, we made plans to go back on Monday and start. I talked about it with him over the weekend, explaining that we'd go see the horses and maybe ride one of them, trying to get him ready for what we'd be doing.

But when Monday rolled around and we rolled into the parking lot at the stables, something snapped in his brain and he decided horses weren't for him. He started crying (and I mean crying) when we got there and just wouldn't stop. He wasn't interested at all in seeing the horses or getting near them.

I really don't know what happened -- too much talking ahead of time? Anxiety is common among those with WS, so I'm wondering if somehow I made things worse by talking about it with him? I don't know. But it seems, for now, that hippotherapy will not be on the agenda for the summer.

So we'll move on to something else -- music therapy, I guess . . . .

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.

Writing a letter

During the past few months, Buddy has made some big strides -- learning to ride his tricycle, learning to use the potty, learning to put words together in longer sentences. We've also been working with him on writing his name, as have his preschool teachers.

I've been doing a lot of hand-over-hand with him because his fine motor abilities are still pretty weak and drawing isn't a strength in those with WS. They tend to have visual-spatial difficulties (difficulty in recreating complex shapes -- for example, when drawing a house, they may draw a square in one place, the triangle for the roof in another spot on the page, and the rectangle for the door in still another spot on the page) which makes drawing difficult, as well.

We try to have a daily time where we draw and write on the white board my parents got him for Christmas. He likes using that more than coloring in coloring books or drawing on paper. His current favorite thing to draw is a "mixer" -- he's fascinated by KitchenAid mixers and likes to have us help him draw them. Writing his name is a necessary evil, in his eyes. He's not really into writting letters.

So I was understandably thrilled when he climbed on the chair this afternoon, grabbed his marker, and said, "Let's make a K." And then proceeded to write something -- on his own -- that actually resembled a K. He continues to surprise and encourage me.

And the cute vest that I ordered for him arrived today--now I just need to make some bean (or rice) bags to put in the pockets to turn it into a "weighted" vest.

Brushing

I mentioned last week that I'd noticed Buddy was having trouble concentrating and paying attention during circle time at his preschool. After reading the post, my mom (a school teacher) asked some of her fellow teachers for ideas to help him.

The OT at her school suggested getting him a weighted vest for him to wear during the times he needs to concentrate. When I mentioned it to our OT, she suggested purchasing an inexpensive fishing vest and filling the pockets with bean (or rice) bags. So I checked on ebay, found a cute one I think might work, and ordered it. I'm hoping it will be here within the next day or two.

When I mentioned the weighted vest idea to Buddy's preschool teacher, she readily agreed that it would be helpful for him (she's taught children with special needs for 20 years) and suggested that a "wiggle disc" might help, too. So, I purchased two of those (one for school and one for home), and they arrived today. We'll see how he likes them.

This morning, our OT mentioned that she had another technique that she's used in the past with other children: "therapeutic brushing." At the WS conference we attended in 2010, I heard several of the lecturers mention brushing but since Buddy doesn't really have too many sensory issues (which is what the brushing is supposed to treat), I hadn't pursued it any further.

Our OT said that brushing is also good for developing focus and concentration. So she gave me a brush and showed me what to do.

He didn't seem to mind it -- he likes having his back scratched. I'm supposed to do it 3-4 times a day for two weeks and see if we notice any difference. Now I'm wondering, however, if I should hold off on using the vest and the wiggle disk so that we don't skew the results of this "experiment."

Bubble wrap as OT

Buddy's preschool teacher mentioned a few days ago that she thought the bubble wrap the kids had been doing during sensory time was helping to strengthen Buddy's fingers. That's one of the reasons I'm glad we have him in preschool--the teacher has been great about working with him in so many areas and with so many tools that I wouldn't think of on my own.

When she mentioned the bubble wrap, I immediately began trying to remember if we had bubble wrap anywhere at home that he could play with. We didn't.

Today, the mail lady brought us a package with the contents wrapped in "bubble pops" (as Buddy calls it). And he knew just what to do with it.

Is there any irony to the fact that the bubble wrap enclosed a book I'd ordered a few days ago about disabilities?

You never know what you're gonna get

This morning we went for another visit with the OT we visited last week.

The thing about therapists is that you never know what kind you'll get. Some, like the OT we had in First Steps, are great. Very proactive in working with the child, very insistent on the child doing what needs to be done, and very good about suggesting ways for us to work with him. Others, like the DT we had in First Steps, are less insistent about getting the child to work and not as good about getting the family involved.

I was concerned that our new OT would be like the latter. So I was pleasantly surprised with Cindy this morning. She was really interested in finding out how he was doing and in working with him and getting him to stay on task. And I've learned that therapy is as much about getting the child help as it is about our learning what we need to be doing to help him -- a philosophy with which she agreed. She was very adamant that therapy is much more effective when the parent is involved the rest of the week.

So, we're off to another good OT start.

Another try at OT

Delays in fine motor skills are common in those with Williams syndrome. This involves actions such as handwriting, drawing, buttoning, self-feeding, and dressing. So the early intervention services usually include occupational therapy.

Buddy had an OT from the time of his diagnosis (August, 2009) through last May, when our OT left the First Steps program. Sadly, she was the only OT in our area, so we were left without one through the remainder of our time with First Steps. I've come to realize the value of the various therapies he's been involved in and have been frustrated that we've been without an OT for almost a year. Although we definitely work with him on these areas, the OT was helpful in showing us specific activities and actions we can do to help him master the skills he needs to succeed in life.

To be honest, I've felt like I've been letting him down by not getting him the help he needs. And my mind automatically looks toward the future -- how much farther behind will he be in five years because I'm not getting him the help he needs now?

When he transitioned into the the special education division of our school system, he automatically qualified for speech therapy. And we've been continuing that once a week. But for some reason, his service coordinator won't sign him up for OT or even do an evaluation on him to find out if he needs OT (which he still does). I'm not sure why. I've asked about it but keep getting told that it's not possible.

So, even though his preschool teachers have been doing a good job of working with him on the OT goals in his IEP, I've still wanted him (and us) to work with an actual OT. After pursuing a few options that didn't work out, I finally called our local hospital to find out if they offered pediatric OT and was so happy to hear they did. So I signed him up for an evaluation.

The OT confirmed that he's delayed in his fine motor skills and said she was available to start working with him next week. And there was great rejoicing on my part. Here's hoping she's a good OT who will push him (and us) to do what needs to be done.

Optimistic Pessimist

I suppose I should stop saying that I see the glass as half-full and admit that I'm a pessimist. The glass is almost empty, for crying out loud.

When Buddy was diagnosed with Williams syndrome, I read as much as I could on WS and my pessimistic tendencies kicked into overdrive. It was easy to become bogged down in the things those with WS aren't supposed to be able to do. And it was easy to look at the goals we were setting for him in his therapies and think, "Will he ever get this?"

When the therapist says, "Oh, he'll get it eventually--just give him time," I find myself thinking, "Yes, but he's not a typically developing child who just has a few delays in some areas. He has a GENETIC DISORDER. He's not guaranteed success." I know--not the best attitude to take, is it?

Lately, however, he's been reaching the goals we've set for him. He walks, he runs, he jumps, he's started talking, and just today, he said, "I have to go." Husband had started potty training with him in May, 2011. I figured that, at this stage, it was an exercise in futility since he wasn't really expressing his wants and needs and wouldn't tell us when he had to go. We've just tried to catch him in the act and sit him on the pot to finish. But today, he stood up, and said, "I have to go." And he did. On the pot. And there was great rejoicing.

He's also been doing really well at puzzles lately. Visual-spatial deficits are common among those with WS and they aren't supposed to do well at things like puzzles. But all of his therapists have been working with him on them (as have we), and just in the past few weeks, he's been able to place the puzzle pieces -- even on ones he's encountering for the first time -- in their appropriate places.

And so, I've decided that I really need to get a handle on the pessimism and start approaching his life in a more half-full way. He will learn to feed and dress himself; he will learn to color in the lines; he will transition to a big bed; and he will learn to use the potty. He will. It may take him a little longer to learn things, but he will.

And, down the road, when the goals get bigger--reading, writing, going to school--we'll work just as hard at mastering them. He may not be guaranteed success, but it's up to us (while leaning on our gracious Lord) to make sure it's a viable option.

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.

First evaluation

The therapists came today to evaluate Buddy--one was an oocupational therapist and the other was a developmental therapist. They spent a little over an hour watching and playing with him, scribbling notes and asking questions about him. They said that by virtue of his WS diagnosis, he was automatically eligible for the First Steps program, which I was happy to hear. Overall, they said that he's doing well. The only delays they saw were in his fine motor and verbal skills. And on those counts, they said the delays weren't because he wasn't capable of developing those areas, but just that he hadn't yet developed those areas. The next step is to meet with a coordinator, formulate a plan, and choose the therapists and therapies we want.