Odds and Ends

No major stories to tell this week, but here are a few quick odds and ends:

Whitney loved trick or treating on Halloween. She walked around the neighborhood collecting candy until suddenly she dropped her candy bag. Melanie told her to pick it up but Whitney refused. So Melanie picked it up and realized it was pretty heavy. All that heavy candy wore Whit's arm right out!

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Whit and Melanie are at the ENT's office this afternoon to see how her tubes are looking. Her ears seem to be draining better after she's been sick. So hopefully both tubes have stayed in and are doing their job this time around.

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Melanie has been calling hotels in downtown Salt Lake City this morning. She's quickly narrowing down possibilities for the venue of next year's 1p36 Deletion Support & Awareness Conference. She's especially looking for a place that will have a free airport shuttle, plenty of conference room space, rooms with fridges and microwaves and a heated pool and hot tub. As soon as she makes the arrangements, we'll spread the word.

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Whit is bored with most of her toys. She's not really got that many things that keep her attention. Melanie and I are really trying hard to think of some new things she can enjoy as Christmas gifts. I just wish Whitney wasn't so hard to shop for. Anyone got some good ideas?

Kindergarten Parent Teacher Conference

When Whitney started kindergarten back in August I was concerned about some of the advanced things that would be expected of her. Was her placement in diagnostic kindergarten really the best thing for her? Could she keep up?

Melanie and I got some answers at our first parent teacher conference with Whitney's teacher. And as it turns out, Whitney is making some good progress. She is much more attentive when instructions are given in class and no longer requires physical, hand-over-hand prompts to accomplish her tasks. She can hold a crayon or pencil with the tripod grip in order to do her class work and she's able to press harder with the crayons so you can actually see her work too.

She recognizes her letters and is even starting to trace the shape of some of them in her workbooks. She can complete some patterns. Like when her teacher shows her yellow, blue, yellow, blue. Whitney knows yellow comes next and then blue again and she'll pick up the correct crayon to go along with the pattern.

Numbers and counting really aren't Whitney's thing yet. Other than being able to point at numbers she recognizes, she doesn't do much counting or quantitative reasoning yet. But all in good time. I have to keep reminding myself that Whitney has accomplished all of this in between being pulled out for physical, speech and occupational therapy as well.

I'm really impressed with Whit's teacher. While kindergarten is a lot of coloring, singing and playing, her teacher sees it as teaching vital basic skills through the medium of coloring singing and playing. She expects quite a bit of her students. Not enough to frustrate Whitney most of the time. Just enough to keep Whitney working and progressing. By the end of the year she expects to see more progress on Whit's letter and counting. That would be terrific.

Whit's off track for a bit now, but her teacher even sent home a packet of things to work on during the break. And you can bet we will. It's encouraging to see Whitney continuing to learn. It's another reminder to never set limits for your child.

Oh and I almost forgot. Happy Halloween from Princess Whitney and Darth Liam!

Fall Weather and Health

Our family enjoys Fall when it arrives each year. Melanie and my mom enjoyed taking Whitney and Liam to the local pumpkin patch this past week to have some fun. But with Fall also comes cooler weather and illnesses that affect my medically fragile little girl.

The headlines are all about H1N1 flu and we're concerned about Whitney catching it so we're trying to track down vaccinations for her and little brother Liam. And Melanie and I were worried when Whitney started with a fever yesterday morning. Could it be this dreaded new strain of flu?

When Melanie called Whit's kindergarten teacher to let her know Whit would be staying home yesterday, the teacher mentioned that Hand, Foot and Mouth Disease has been going around Whitney's elementary school. This type of intestinal infection can also begin with a fever. And sure enough, this morning, Whitney has other Hand, Foot and Mouth symptoms.

So we're safe from the dreaded Swine Flu for the time being, but Whitney has some very painful sores in her mouth and elsewhere. I feel pretty bad for her because she's miserable and refuses to eat anything. It hurts just to have food in her mouth. So she's getting lots of cool drinks and Melanie is going to try and get some yogurt into her. Luckily the initial fever does seem to have subsided.

Hand, Foot and Mouth Disease is spread by direct contact with saliva. And as much as Whit puts her hands in people's faces and then in her mouth, I can easily see how she caught this. Now the trick is to get her well again. All in good time, I'm sure. Hopefully she'll be able to enjoy some more healthy Fall days soon.

An Assistive Communication Device?

Raising a child with special needs always presents new ideas to consider. Lately I've been stewing a lot over assistive communication devices. These are gadgets that can be used by those who don't speak to play sentences aloud for them. I think the technology is terrific and there are many who benefit from this type of device.

The reason I'm spending so much time thinking about this topic is because several people at school have suggested one for Whitney recently. I guess I hadn't really ever considered this for my little girl because she and I and Melanie and the rest of our little family all communicate well using American Sign Language. Whitney gets upset a lot more often because she can't have what she wants than when she can't communicate what she wants. Why would I want her to have to learn yet another way of trying to communicate?

I asked Melanie that exact question and she had a good answer. What about all the other children in the neighborhood? Whitney can't talk to any of them. Other than us and a few other signers out there, she's completely cut off socially. Good point.

But can she really pick up yet another method of communication and use it effectively in her everyday life? Will it be a good fit for an active little girl who's already packing gadgets in her ears to hear? Would a device like this take the focus off actual speech skills? We haven't given up on Whitney speaking. Will this work any better than the Picture Exchange Communication System (PECS) program that Whitney totally didn't get? Who knows? I'm just full of questions and I'm seeking answers. I'll be sure to share what I find.

You're Funny. Jump!

Whitney has made up a new game that makes us all laugh. Wherever we're at she'll point to someone and tell them they're funny. Then she'll ask them to jump. Melanie and I aren't sure where she got the idea but she seems to think jumping is hilarious.

The other day Whit and Melanie were at the doctors office for some hearing tests. They bumped into Whitney's physical therapist. Whitney said hi. Then she told her PT, "You're funny. Jump!" So Whit's therapist jumped. Whitney laughed and laughed.

In the days since then, all of us around the house have been recipients of the request to jump. And how can you say no? Whit's just too cute. Other people must think so too.

On Saturday we went shopping for a few things at our neighborhood Lowe's store. As we were checking out, the cashier was asking Melanie and I about Whitney. We explained about 1p36 Deletion Syndrome and how Whit signs to communicate. Whitney knew she was getting some attention. She signed to the cashier, "You're funny. Jump!" Melanie interpreted so the cashier could understand Whit's signs. Then the girl at the register said okay and jumped for Whitney. We all had a good laugh.

In the days since, we've heard from Whit's bus drivers and a few others about Whitney asking them to jump as well. So my daughter's silly game appears to be spreading. Be warned, if you run into Whitney somewhere out and about, you may be asked to jump!

Photo: Whitney with Great Grandma Hanson, September 2009

Gaining Strength and Having Fun

Whitney's strength continues to improve. Melanie has made our walks around the block almost a nightly thing now. And Whit will go most of the way without even reaching out for our hands. Her stamina is really improving and so is her stability. Step after step she proudly walks along. Sometime the neighborhood kids will stop their playing and shout, "Hi, Whitney" and offer words of encouragement. Whitney smiles and often waves back as she walks along.

There are other benefits to her improved body strength as well. For the first time Whitney is able to swing on our glider swing out back. Her trunk is so much more stable. She just hangs on and enjoys the ride. Melanie and Whit are demonstrating Whit's new swinging ability in the photo here. Whitney is pretty proud of herself for being able to do yet another thing she sees the other kids doing.

The Interpreter or the Aide Dilemma Resolved

We've finally gotten to the bottom of the signing aide versus interpreter debate in Whitney's kindergarten class. Last year Whitney had a terrific signing aide who was diligent about helping her to form signs correctly in a hands-on way. Melanie and I were concerned this year when we learned that Whit wouldn't have a signing aide at all. Instead she was assigned an ASL interpreter to help her along. The concern Melanie and I had was that an interpreter might not be able to take the same hand over hand approach to teaching Whit to sign.

This concern led to some phone calls to the coordinator over signing aides and interpreters for our local school district and finally calls to the special education coordinator as well. Melanie left quite a few messages and was getting frustrated that the return calls weren't coming.

Then, late last week, we got our answer. The district special ed coordinator called and talked with Mel for quite a while. She had been piecing together the story between Whitney's kindergarten teacher, her interpreter and others involved in order to give us a straight story when she called.

As it turns out, the special ed coordinator knows Whitney personally and specifically requested an interpreter for her instead of a signing aide even though her individual education plan states that she'll have an aide. And she was right for doing so.

The one detail that this kind district administrator was aware of that we as parents weren't, is that interpreters are assigned to a specific student and a signing aide is not. So Whit's interpreter is there for her all week long during every moment of class. If Whitney had been given an aide, she might see her less during the week and when the aide was present, she'd have to share her with the rest of the class as well. For one on one attention, having an interpreter is the way to go.

The best news is that interpreters are also allowed to do the hand over hand work necessary to teach signing to young ones. As the students learn and grow, less of that work is necessary. Until finally in high school, the interpreter's job is 100% translation with no direct teaching. So Whitney's interpreter will be working closely with her and teaching her as time goes by. And it'll be a one to one relationship that should really benefit my daughter.

I'm grateful for a caring district administrator who has many students' needs to attend to. But who would take the time to single out Whitney and make sure she would have the right people in place to continue her education in the best way possible. That's going above and beyond to help one needy little girl. And that little girl and her family are thankful.