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You Have a Family Member With Down Syndrome, So Now What? Part 2

Copyright © 2012, Stephen Hawley, all rights reserved.

Every child is unique.  So is every child with Down syndrome.  Still, how do we recognize someone with Down syndrome so easily?  We see physical characteristics that are common – eyes with an epicanthic fold, smaller ears, somewhat drooping face, unusual proportions (shorter arms and legs), short stature, and so on.  When you look closer, you may see other things like a palmar crease, Brushfield spots, etc.  So I will often speak in generalities.  Not everything is going to be true in all cases or to the same degree.

One thing that you will see far more often than not is that our children are smaller than their peers.  My son, who is 5, is the same height as his sister, who is 9.  In considering many of the things that need to be adapted for children with Down syndrome, we have to consider size.  My daughter has tiny hands.  Here is a picture of her hand on top of mine:

You can imagine that as an infant, things could be more challenging if your hands are smaller.  Now consider one of the simplest toys:

and what could be wrong with these?  Simple – they’re too big.  Alphabet blocks are about one and a half inches on each edge.  They were too big for my daughter.  Worse – since she had a stroke and didn’t have solid use of one hand, she couldn’t pick them up with two hands.  So what do you do?  Make them yourself.

I used maple and cut blocks one inch per side.  You can use pretty much any wood.  Heck, you could cut these from a two by four, but maple won’t be problematic if it goes into your child’s mouth, is durable, doesn’t splinter easily, and a nice looking wood.  You could use poplar, cherry, hickory, walnut or other woods.  Here is the diagram.  When you show it to your family member who does woodworking, s/he will probably laugh because it is so easy:

Sand the blocks smooth and ease the edges and corners a little bit so they’re not sharp.  I made four or five of these.  While I was at it, I also made some two inch blocks.

Why are blocks important? There is a milestone that gets used in early intervention to measure progress in motor control.  It has to do with the ability of the child to stack blocks and it usually shows up between 8 and 12 months.  If your child can’t pick up the blocks because their hands are too small, then this milestone won’t happen until later.  Encourage play with the blocks by making piles and stacks and taking turns.  For scaffolding block stacking, start with a two inch block as the foundation at first.

Later on at around 12-24 months, your child will develop or start to develop an interest in another skill/milestone known as “dump and fill”.  You can encourage this by using the blocks and a container that is noisy when a block drops into it.  A small metal mixing bowl is perfect because it is lightweight and makes a lot of noise (especially beating it with a spoon – also an 8-12 month milestone).

When I made my blocks, I intentionally used no finish on them nor did a paint or carve letters.  Why? Many kids with Down syndrome are highly visually oriented.  So much so that it’s easy to get distracted.  Since the goal isn’t letter awareness just keep things simple.

Enjoy!

You Have a Family Member With Down Syndrome, So Now What? Part 1

Copyright © 2012, Stephen Hawley, all rights reserved.

Aside from major issues like heart defects, the one single thing that persistently affects the life of a child with Down syndrome is low muscle tone.  Babies and kids with Down syndrome tend to be floppy.  Muscle tone is how muscles will continuously contract to keep in a neutral state.  When Alice was an infant and toddler, holding her was like holding a sack of potatoes with free will.  Whereas many babies could be held with one hand, you had to use two with her.

I did a test with Alice and her brother – I had them both lie down on the floor and relax.  This is what I got:

Although the pictures aren’t great, you can see pretty clearly that Alice’s shoulders have dropped right to the floor and Stuart’s are up from the floor.  Stuart’s muscle tone is keep his shoulders up.  Alice’s lack of muscle tone lets hers drop right to the floor.

This makes a huge difference when the child is an infant.  Think about this – if your body naturally spreads out when you’re lying down, it is significantly harder to do things like lift your hands up to grab a toy or put your hands in your mouth.  Both of these actions are considered developmental milestones.  If you have low tone and no assistance, these will happen later.

Our Early Intervention physical therapist suggested rolling up a towel and putting it under her shoulders and hips on each side of her body.  We quickly found that while this worked, it didn’t work well.  Towels compress easily and we spent a lot of time re-rolling them.  Both of us being engineers, we decided we could make this much better.  You can too.

Materials

1. Two knee high nylon stockings
2. Two long tube socks
3. 10 pounds of rice (give or take)

Instructions

How to Use

During play time, put the socks under each side of the baby to prop her up.  If you have the kind of toy that is a play mat with half hoops that dangle toys over the baby, this is perfect to use with the props.  The props should make it easier to reach up and grab at toys (milestone) or bring toys to center line (milestone).

Turning the hips in will also get the child’s hips more used to being turned in which will make a difference with learning to crawl (milestone), sitting up (milestone), pulling up (milestone), cruising (milestone), and walking (milestone).

When you see the kind of snowball effect you can get with something so simple, why wouldn’t you use it?

If your child has a physical therapist, you should check to make sure that they’re OK with this.

As a final note, I want you to always keep in mind: the best therapies are the ones that get used.  If this doesn’t fit in with your parenting (or the parenting of the child’s caretakers), don’t try to make it fit in.  Find something else that does work.

You Have a Family Member with Down Syndrome, So Now What? Part 0

Copyright © 2012, Stephen Hawley, all rights reserved.

I’ve been thinking about doing this for some time.  One of the things that happens when you have a new family member with Down syndrome is that you want to do something–anything–to make it better and you don’t know what to do.  Are you going to reach in and remove 33% of the 21 chromosome in every cell?  No.  At least not yet.  Are you going to send the parents a copy of Welcome to Holland?

Instead, I’m going to offer you a dozen things over the next year that you as relatives or parents can do for your new family member with Down syndrome.  These are all crafty things and most of them are easy (if not trivial), cheap, and effective if used consistently.  Many of these were suggested by our case worker or physical therapist from our local Early Intervention program and we either refined them or expanded on them.  After the first year, our case worker said, “when are you going to write the book?”  For years now, my inability to find or make acceptable illustrations has stopped me.  At this point, I’m giving up on that and will be drawing things on my own.

One thing to keep in mind is that the best tools are worthless if they’re not used consistently, so before you launch on a weekend binge of making them all, make sure you talk to the parents and the EI staff to see if what you’re making makes sense for this child.

Please share these, but do please give credit where credit is due.

Having a Child with Down Syndrome, Part XXI: Literacy

Copyright © 2011, Stephen Hawley, all rights reserved.

Many parents of children with Down syndrome are concerned about literacy.  The process of being able to read, comprehend, and write.  We’ve been lucky.  Alice loves reading and being read to.  It’s something we do often and encourage.  Most weekends, I take her with me to do the week’s shopping and have her help put things in the cart.  This week, I tried an experiment.  I made Alice her own personal shopping list to take with her.  When we started, she read each item on the list and I made sure that she knew what they all were.  She held the list and picked out each item (or pointed them out if she couldn’t reach) and put them in the cart, then crossed them off the list.

It worked wonderfully.  She loved the job and the independence.  The items weren’t in the order that we go through the store.  She did a great job keeping track of everything.

Clear win.

New Prenatal Test for Down Syndrome: a Parent’s View

Copyright © 2011, Stephen Hawley, all rights reserved.

There is a new prenatal test to screen out Down syndrome, announced this year.  This is of particular interest to me on a number of levels.  This test, unlike the current state of the art is a non-invasive blood test and can be done in the first trimester.  This test is highly accurate (it’s a 98.6% accurate test with .2% false positive) and is lauded as a way to eliminate Down syndrome from the general population.

I spent a great deal of time thinking about this and I have two problems with this.  First,  it presupposes that nobody would want a child with Down syndrome or that people with Down syndrome add nothing to our society.  The second is more insidious.  If this test is only practical for those who have health insurance or affordable health care, what portion of the population will be relegated to having children with Down syndrome?  Yeah, you got it: the people least likely to have the means to raise a child with disabilities.

My main objection to the first supposition is that it is naive and trivially disproved.  All people, I believe, have some value and I believe that people with Down syndrome have a great deal to offer all of us.  I’m quite happy to be taught things by my daughter all the time.  The main problem is that my depth of understanding is in the minority.  And I will be the first to admit that despite my goals of being a well-educated person, my own knowledge of Down syndrome was very small and my ignorance huge.  I’m glad that has changed.  Yet, there are far more people who are ignorant and are willing to take a veiled opinion as fact, or are dealing with a doctor who is just as ignorant.  To give you a sense of the insidiousness of language, how many of you (and be honest) caught the use of the word “normal” instead of the preferred word “typical” in that article.  To be clear about where I stand on that: I’m certainly typical, but I’[m hardly normal.

The second issue is worse in that if it comes to pass, Down syndrome will become a class condition and not a uniform condition.  Up until now, it was a condition that was uniform across the entire human race.  It didn’t matter what your race or social standing is, the percentages don’t change.  If health insurance isn’t made available to the entire population, Down syndrome will become a social class condition.  I believe it will particularly bad because I think that those who do not have the means to afford health care will also be least able to do proper research, have access to information, and be good advocates.  Further, if they didn’t have health care to start, how will they afford the extra care their child will likely need?  Finally, available options and research to help those with Down syndrome won’t happen.  Don’t think so?  Read this article.

The final problem will be that without the voices of advocates, all that has been gained in the past 40 years in terms of putting people with Down syndrome into society instead of cloistered in an institution is at risk of being lost.  Let me remind all of you what’s at stake here: people with Down syndrome left in institutions lived short, sad lives with little meaning.  People with Down syndrome who are raised in a loving home and cared for and accepted by their community live long, happier, more meaningful lives – and we all benefit from that.

You might be thinking that I am against this screening.  No.  I am not.  You might think that I am for this screening.  No.  I am not.  Instead, I’m am a strong believer in choice.  I didn’t have a choice with my daughter with respect to Down syndrome.  Raising her well has been the most challenging thing I have ever undertaken,  yet I’m choosing to accept that challenge with my eyes as wide open as I can manage.

And that I think is the crux of my opinion on the matter:  I think that people should be given the opportunity, when offered the screening and when offered a positive result to make a well-informed choice, not an ignorant one.  So make the information better.  Make a positive test come with a session with an unbiased genetic counselor.  Make an offer to answer questions openly and honestly.  And please, continue to improve acceptance of those with disabilities in our society.  You’ve done well, but there is more to do.  For example, the cognitively impaired are still considered to be a fair target for deprecating humor.  Work on that.  I trust you.

Having a Child with Down Syndrome, Part XX: Learning from Others

Copyright © 2011, Stephen Hawley, all rights reserved.

Oh, my poor brain.  Generally speaking, I have a good memory.  I remember things visually/aurally more than any other way and once something is in my head it stays there for a very long time.  It can make for a great party trick with people I haven’t seen for a long time.  Unfortunately, parenthood (probably long term sleep deprivation) and age have wreaked havoc on my short term memory, especially for names.  It’s embarrassing and I’ve gotten into the habit of just apologizing to people ahead of time.  Among software people, I will just shyly admit that my name cache has been flushed.  That’s good for a few yucks.

This damage is part of the reason why I try to sit up and pay attention when I talk to other parents of older children with Down syndrome who are talking about their current issues.  Down syndrome is a staircase condition.  If 100 people fall down the same staircase, you’ll have a bunch of similar injuries, but not 100 identical issues.  Still, there may be a lot og common threads and if you don’t listen then you may not benefit from the wisdom and experience of others.  This is importance of being part of the community.

And that’s what brings me to these:

These are eight of Alice’s baby teeth, a few hours after having been extracted.  Eight teeth?  Really?  In one of the reference books we have for Down syndrome, there is a note about teeth, to the effect that they come in “late and in unusual order.”   This single sentence doesn’t bear a lot of meaning until your child is 2 and has no teeth.  At that time, I remember being at a DS resource group picnic and talking to a mother about her daughter who was in second grade and noted that her daughter’s adult teeth were coming in, but the baby teeth were still there.  Color me unsurprised when the same happened to Alice.  We prodded her dentist about it when her first adult incisor came in behind the baby one, but got a “wait and see” response.  A year later they pulled them.

Oddly enough, the same parent, at the same time, told us about how her daughter had developed a habit of “eloping”, where in the early hours of the morning, she left the house and took a walk on her own.  Not too long ago, Alice got up one morning, put on her bedroom slippers, grabbed an umbrella (it was sunny), left the house and crossed our very busy street and started going for a walk.  One of our neighbors brought her back.  Our solutions to this: a lock on the door she can’t reach; a lot of talking about how running away is not OK; dog tags with contact information that she wears; and a stop by the police department with pictures and information.

So if you’re a parent of a baby/infant/toddler with Down syndrome – this is just a word to the wise.

Having a child with Down syndrome, Part XIX: Music

Copyright © 2011, Stephen Hawley, all rights reserved.

Music is a big part of my life.  It always has been.  My mother was a very accomplished pianist and saw to it that our house was filled with music.  She also insisted that both my brothers and I took piano lessons.  While I play to a certain degree of incompetence, it is certainly not my instrument.  Since Alice was born, we’ve made sure that there were simple percussion instruments and simple wind instruments and we’ve done guitar and singing and some music classes.

This year, with Alice entering second grade, looked like the right time to start doing more formal lessons with her.  When you need to do this, where do you start?  In my case, I chose to start where I started.  The music teacher in my grade school use the Kodaly method for teaching music in first grade and this seemed like a good place to start.  Like many things, I play to my strengths – I have a very strong memory and can recall a fair amount of the lessons that were presented at the start.

The method works like this – children are started with simple vocabulary and symbology: a quarter note and a quarter rest to start.  The quarter note is called ‘ta’ and the the quarter rest ‘rest’.  Each is presented with a gesture – ta a clap, rest your hands falling out to the side.  Alternately, you can use simple percussion instruments: sticks, sandpaper blocks, bells, triangle, etc.  Notes are written on plain paper – no lines – and the children play them with direction to start even rhythm.  Then children pick the canned patterns themselves and direct or pick who will direct.

I am at this stage now with Alice and it is fun.  Fun for her because she likes the praise, likes the activity, likes to direct and so on.  Fun for me because I love music.  More so because I can see what this is bringing her.  Alice had a stroke when she was born.  It continues to affect her right side.  Many of the things we do to develop that side are, quite frankly, nagging. The same way that every other parent has to constantly repeat ‘cover your cough’, ‘magic word’, etc., we have to say ‘napkin hand’, ‘use two hands’ and ‘other hand’.  This is different.  She wants to use both hands to clap.

I also see her reading and processing visually.  When I play the music, she has to listen and see if I did it right.  Saying ‘rest’ makes her use her ‘r’ sound (which really needs this).  She is developing sequencing.  She is developing timing.  She is learning to love music.  How could I not be having fun seeing all this?  This is totally awesome.  Soon, I will be adding in half notes, half rests, eighth notes and eighth rests and at that point I will start having Alice compose the measures that we read.  Do you know what that is?  Math.  It’s not even math wrapped up in a candy coat because the music isn’t candy – it’s the substance.  Math becomes the candy coat that comes along for the ride.

Kodaly?  Totally knew what he was doing.  I’m sold.  I should probably also look at the Orff method as well and round out my personal education and see what other goodies I can steal.

Having a Child with Down Syndrome, Part XVIII: What is the Burden?

Copyright © 2011, Stephen Hawley, all rights reserved.

This summer has been a busy one.  Heck, every week is busy.  That explains why I haven’t really written a lot recently.  I think a lot, but the energy for writing hasn’t been there.  E took Alice to a camp called LARC.  This is the second time that Alice has gone to this particular camp.  LARC stands for Lefty and Righty Camp.  It is a program that is designed to help children who have had, well, brain damage.  Specifically, damage to one side of the brain or the other.  Alice had a stroke and has been working with the challenges of diminshed gross and fine motor control on her right side since birth.

LARC is set up to push the weak side.  They do this with Alice by putting her good arm into a cast, thus forcing her to work her weak side.  We have done this without the camp before, but the camp setting makes a great deal of sense for Alice, especially if she is around other children with similar challenges.

During the time that E and Alice were away, I had the opportunity to be a bachelor with Stuart.  And in the time we were together, I got a sense of the burden of having Alice.  It’s not something that I’m proud of putting it in these terms and I would prefer to be clear that these are costs that come with the richness that she brings.  Everyone has costs in a family, including me.

So during my time with Stuart, I took note of what I was able to get done while we were together and how much time I had for other things that unfortunately fall between the cracks.  I found that in the morning, I had time to get a load of laundry in and into the dryer.  I didn’t have to do the previous night’s pots and pans because they were already done.  Instead of making sure that Alice was getting dressed instead of taking every book off her shelf, I could make lunches uninterrupted.  I didn’t have to hound Alice until she put the DVD’s away and maybe this time would listen to me about why certain ones don’t play anymore because she scratched them.  I didn’t have to spend the time to find her orthotics.  I didn’t have to crawl under the dinner table scraping off dried Chex.  I didn’t have to make sure that in the ins-and-outs of getting ready, Alice didn’t go wandering off through an unlatched door.  I didn’t have to chase her down to go back and wash her hands.  I didn’t have to supervise her brushing her teeth.  The list goes on.  And on.

When we were expecting, my friend Dan who is one of the most linear and wise people I have met, passed on this little gem: it takes 1.5 adults to effectively raise a (typical) child.  In having three weeks away from Alice, I found that taking care of Stuart was, well – not easy – he has a hard time when he’s away from his mom, but in contrast it was so much easier.  Alice’s burden is 3x a typical child.  At least that’s what it feels like.  So it takes 4.5 adults to effectively raise Alice (or in our case, we sacrifice things like cleanliness and house maintenance in order to pick up the slack).  And in practice, this seems about right.  She see’s a speech therapist, a physical therapist, an occupational therapist, a ballet instructor (which between you and me is more physical therapy) and a math tutor.  That’s 7 adults, but none of them are full time except E and me.  I think it adds up about right.

I bring this up because E and the kids went off to spend time with family for the week and I’m in the process of going feral.  And when I say ‘feral’ for a man of my interests and my age, it means that I ask myself, “what things need to be done around the house that I can do alone and I couldn’t otherwise do with the kids around.”  So shortly after they left, I moved furtniture out of the dining room, sanded the flloor, sanded window sills that had gotten some water damage, sanded some of the living room floor, that had gotten scuffed over the years, cleaned the sanded areas with denatured alcohol, and put down a coat of polyurethane and had that done before 8:30.  And here’s the scary part about doing all of that: I wasn’t even pushing hard.  I took some time to play a game, web surf, took a trip to Home Depot, ordered replacement parts for a sander that self-destructed, and had a leisurely dinner.  And the final kicker: I still have energy left to write about it.

No doubt about it. Young children are definitely a burdenous gift and Alice even more so.  I love her to pieces.  The lonely time away is as much a gift as the full time together.  Yes.  I am conflicted.  Who wouldn’t be?

Having a Child with Down Syndrome, Part XVII: Vehicles

Copyright © 2011, Stephen Hawley, all rights reserved.

For the past 16 years, I have driven pickup trucks.  It meshed well with my hobbies and general lifestyle.  Both trucks I’ve owned were extended cab models that were small enough to get decent mileage, but big enough to haul a week’s groceries in the cab as well as sheets of plywood or drywall in the bed.

For the past year, it has been increasingly challenging to haul the kids.  There is room in the back for child seats, but that space is starting to get a little tight, and of course, it is neither ethical nor safe to put them in the bed!  It’s more of a challenge with Alice.  She can’t climb up into the truck on her own and even with a step, she has a great deal of difficulty getting into the back: her feet get caught on the  front seats.  It’s also getting harder for me to left a wiggling 50 pound girl in and out.  Never mind that on the way out it’s a coin flip if her shoes or orthotics will get caught.

Since last summer, I’d been looking at vehicles that might replace my truck.  And for the first time, E and I are making a decision to buy a vehicle based on accessibility.  This is a good thing.  I thought I would document the process we followed and leave it on the web for posterity.

Alice is in a funny category of disabled.  She can get around on her own, but she has a number of limitations due to her stroke in tandem with low muscle tone consistent with Down syndrome.  This means that she’s not in a wheel chair so we don’t (and shouldn’t) have a life.  Yet most vehicles are not accessible to her and lifting her up is not a long term solution.  I believe it is best that has as much independence as possible and getting herself in and out of a car is going to be part of that.

Step 1: get a list of candidate vehicles.  To do this, look at what a few reputable manufacturers have in stock.  Then read reviews on them.  I found that Edmunds reviews often contained a list of vehicles that are considered competitive.  Add these to your list too.

Step 2: make a spread sheet about the cars.  You should have broad categories that define what you want (safety, economy, accessibility, total cost, etc.).  Add to those categories subcategories that make sense or are important to you.  Consider rating these from 0-10, where 10 is best and 0 is worst (trust me, this makes it way easier).  Then for each broad category, make a cell that sums them up and divides that by the number of subcategories (if you’re a rockstar, make each subcategory have a weight so that all the weights add up to 10, then take each subcategory score and multiply it by the weight and the sum of all those will be the final score).  Finally, have a cell that is a sum of the scores of each broad category, and again you can weight these.

Step 3: collect as much data as you can without going to a dealer.  For example, you can get safety rating from the NHTSA.  You can get extensive recall information from LemonAuto.  Edumunds can give you TCO (Total Cost of Owernship), which is a better idea of what a vehicle will cost over its entire life.

Step 4: test drive the car, if possible without your child(ren).  It will make your life a lot easier.  Bring a tape measure with you.  I took measurements from the ground to the bottom of the doorway.  I measured the depth of the step down into the car (if any).  I measured the distance from the back seat to the front seat when the front seats were adjusted for E and I.  I tried to get a sense of how the door would help or hinder.  Were there any hand holds or a place to mount them if they weren’t.  Did the car come with running boards and if so were there any on the lot that had them?  If the car didn’t come with running boards, were there after market running boards for that year/model and how bad are they (my research indicated that most models in the northeast were given a lifespan of about 3-5 years.  I found one brand, Romik, that comes with a 10 year warrantee.

Step 5: when you have it narrowed down to two or three vehicles, take your child with you.  When Alice and I went, I brought along a step stool that she uses in the bathroom to get to the sink.  I brought her into the dealership and set up the step stool next to the car and put her booster seat into the car and asked her to climb in.  ”Need help,” she said.  ”No, I think you can get in on your own.”  And she did.  I had her climb out.  No problem.  I put the step stool in the foot well and asked her to put take it out, set it up and climb in on her own.  She did.  Then I tried her on the other side.  She was liking this game.  Terrific.

Step 6: Negotiate.  I’ll tell you my basic technique, since I hate negotiating.  Since I got along well with the salesperson at the dealership, I told him that I was going to collect quotes and give him the chance to meet or beat.  I also chose the end of the month and the end of the quarter for this.  Then I sent email to every dealership within 200 miles requesting a quote.  I requested the “out the door” price and let them know that it was a competitive bid and I would buy the lowest.  I also requested that all quotes be sent to me via fax.  Why?  Because a quote in writing is a contract.  I am not a lawyer, but I am a programmer and I know that email is pretty damn easy to forge/deny.  Handwriting on a quote, less so.  Also, requesting via fax and requesting an “out the door” price set a bar for the salepersons.  You are testing their ability to follow directions and to attend to details.  I had to call every single dealership to follow up on the email and get action, which I found astounding.  Beyond that, I gave every dealer exactly one chance to correct mistakes (quote in email, not including taxes, DOC fees, etc.) and then decided that if the salesperson couldn’t follow instructing, I didn’t want to cut a deal.  I brought the quote to the original dealership and they met it.  By the way, make it clear that if they try to charge you one cent more than an agreed upon amount, you will walk out since you have a written quote for that same amount.

What I wished I had known a priori: many car manufacturers have something called a mobility program.  If you or your passenger has accessibility issues, the manufacturer may offer a rebate for modifications that need to be made to the car to aid accessibility.  I won’t give you a list since my searching showed that it changes from year to year.  Check the manufacturers web site.  Do a broad search on the internet for “carcompany mobility” and see what comes up.  I had no clue that any manufacturer offered this until a sales manager at a Hyundai dealership pointed it out.  Then I searched for who offered what.  Be careful to read the fine print before you depend on it.  For example, so dealerships limit it to things that are installed by third parties and may not cover “accessory” items (like a trailer hitch, if you are going to stow a wheelchair on it; or running boards)!  You will also undoubtedly be required to demonstrate proof of need.  Be sure to get a prescription or a note from a doctor or physical therapist (or whatever the manufacturer requires).  Also keep in mind that reimbursement may be time limited – be ready to act.  If you’re working with a dealership that doesn’t offer a mobility program, by all means use it as a bargaining chip (“Hyundai will give me up to $1000 back for …, why should I pay you for something that’s free from them?”) and see how quickly they change their mind.  Remember, in the 2011 economic climate, dealerships want you as a return customer (for maintenance too) and as an advertiser for them.  If they won’t play nicely, walk out or threaten to do so.

Having a Child with Down Syndrome, Part XVI: What Can I Really Expect?

Copyright © 2010, Stephen Hawley, all rights reserved.

This year was special for Alice.  She has been taking ballet classes for more than two years and has been progressing well.  Imagine as an adult learning to dance only 5 years after having a serious stroke, having never danced before.  Also imagine having to do that when it took four of those five years to learn how to walk.  Ballet is both an activity and physical therapy from out point of view.  So much so that we got her ballet instructor to sit in on PT sessions to see what she would need to worry about.  I highly recommend this.

As I said, this year has been special.  This is because Alice was in her first complete ballet as a performer (as opposed to a recital).  She auditioned and got a role as a reindeer.  In her part, at the end of the first act, she and the other reindeer pulled out a sleigh to carry Clara off to the Land of the Sweets.  At the beginning of the second act, the team pulled the sleigh out onstage, prancing all the way.

The most wonderful thing I overheard was from her Aunt who said she couldn’t tell which one was Alice.  For a girl with a pronounced limp, poor control of her right arm, and super low muscle tone, that’s a high compliment.  I watched her and could spot her pretty easily, but she did a terrific job lifting her feet for the prancing.  It was heart warming.

Yet, there from a person with highly critical thought, there is no such thing as a free lunch.  I hadn’t seen the Nutcracker since I was in 4th grade, so it was terrific seeing what I remembered and what I didn’t.  I watched all the parts and tried to imagine Alice as a flower or as one of the children or as a candy cane or gingerbread girl.  I had a very hard time seeing that.  Other children without her challenges are able to move so much faster.  How could she possibly keep up?

Maybe someday she will – I also couldn’t imagine her prancing as a reindeer, so I’m prepared to be wrong, but it doesn’t change the sinking feeling.

On the bright side, Alice really enjoyed the makeup process, especially watching players take off their makeup.  She took a liking to the man who played Mother Ginger and liked helping him take off his makeup.  He was patient and kind.  I found out later, he was Mo Willems, and Mo, if you read this, thanks.