When I was in college, there was a point where I walked upstairs in the library and found myself winded when I reached the top.  Not good.  So the next semester, I added a PE class in running to my course load.  I liked it a lot and I've kept at it on-again-off-again over the years.  When I take up an exercise program, it's almost always running.  This is especially funny since I'm not a particularly good runner.  Last year, after another patch of crazy life, I took it up again and followed the Couch to 5K program.  I succeeded in it and kept at running until I had some health problems that tanked my stamina and made it impossible to run.

Three weeks ago, I started up again, but not with Couch to 5K program - I'm using a self-paced program to get myself into a much longer range, because I decided to run the Falmouth Road Race in August.  This is a highly competitive 7 mile race and one that attracts scores of elite runners.  I am not one of those; at least not in the usual sense of the word.  As a member of the Massachusetts Down Syndrome Congress, I have received scores of mailings about the race.  The MDSC gets a small number of race slots for the purpose of fund-raising and this year, I grabbed one of those slots.  In the sense that this is a small, privileged group, I am elite.

I am committed to this race and committed to helping raise money for the MDSC, much in the same way that I'm committed to helping my daughter grow up to be the best person she can be.  The MDSC has been instrumental in providing families with support, information, and resources about Down syndrome to make my commitments easier.  I have such gratitude for the organization and its help, I feel it fitting that I should give back.

My running goal? To finish.  Ideally, I'd like to finish in a pokey 70 minutes.  I think I can do it.  So far, I'm using 8.5 minutes/mile on my "fast" days and 10 minutes/mile on my "long" days.

My donation page is here.  I have set a basic goal of $1000, but I would like to go way past that.  I had intended to promise to match every donation up to $300, but an anonymous donor has already put in more than that!  I still will, but please consider donating.  It's tax-deductible and it's a worthy commitment.  Please help.

I had both kids for the day yesterday as E had gone to a special ed conference.  I had a a simple day planned with one treat in the middle: we were going to go to Amelia Park to go skating.  Now, I've tried taking Alice skating before and it has never gone well.  On skates, she lacks confidence and is terrified of falling and slipping.  It has always ended in tears.  At Amelia park (and many other skating rinks, for that matter), you can ask to borrow a sled hockey sled with push bars and once with Alice alone, we found an appropriate sled.  This time, however, there was only one sled with a push bar and it had but a single blade under the seat, making it very unstable.  I'm an OK skater at best and felt very uncomfortable taking her out in that sled, so I passed and let my son go out on the ice by himself while I explained to Alice what was going on.  She wasn't happy.  I'm not surprised.  We spent some time calming down, during which time the rink manager came out to apologize to us and was almost on the verge of tears herself.  Stuart kept coming off the ice to say 'hi' to Alice, and Alice got very excited about seeing him.  She was very proud about how well he was skating. She also liked cheering him on by yelling, "Go Stuart! Go Stuart!"

While we watched, a couple came off the ice and introduced themselves to me and to Alice.  They, it turned out, do volunteer work for Special Olympics and were happy to watch Alice while I got some ice time with Stuart.  I was a little nervous at first, but Alice is usually a pretty good litmus test of character and the Special Olympics t-shirt was a dead give-away that they were on the up and up.  So I went out and surprised Stuart and we both would swing by the entrance to give Alice a high five.  Alice was thrilled, and I had the opportunity to relax just a little bit.

In special needs parlance, this is called respite and I don't know these people or how they came to be in exactly the right place at the right time, but it was awfully nice of them and I told them so.  Respite is important.  We need to recharge.  We need to smile.  We need to relax. Respite is a recognition and acknowledgement that our patience is not limitless and we are not superheroes.

You would not believe how easy it is to create tools to assist your child as she grows and starts going through her milestones.  Sometimes all it takes is a little nudge here or a little prop there to get your child doing new things.  This month's project is one that you can do with the simplest of materials and tools and carries a fairly big benefit.  It's a desk:

Materials

A cardboard box about 6 inches tall, a foot wide, and 8 inches deep.  The dimensions aren't critical as long as it is wider than your child's hips and it is tall enough that when your child sits on the floor, the child's forearms rest easily on the box or slightly above it. Packing tape.

Instructions

Using sturdy scissors or a matte knife, cut the flaps off the top on each side.  Flip it over and cut two arches on the long sides for legs.  If necessary, pull off all the old tape holding the (new) top on and put on fresh tape to hold it firm so that it won't tempt small hands from pulling it off and tasting it.

How To Use

Have your child sit on the floor and place the desk over his legs.  Put a toy or two on top of the desk and encourage your child to play with it.  You can also put a piece of paper on the top so and let him crumple it or tear it or scribble on it.

Why and when might you need this?  At as early as 4 months most typical babies will start to be able to sit up for a few minutes at a time.  This may come later for our kids because of low muscle tone, making it harder to sit up (if your physical therapist hasn't recommended it, you might ask him/her about Theratogs, which can help trunk stability among other things).  Play placing toys on the desk, you're putting toys within easier reach without having to bend or flop over.

Early on, you will probably want to put the toys in the center of the desk encourage midline grasp and play.  Later, you can put the toys in the far corners of the desk and prevent the closer hand from grasping the toy.  This will encourage cross body reach and turning, which is a good thing.

One thing to avoid: you might think, "ah! plain cardboard, I can decorate this with bright colors or pictures.  You, of course, know your child better than I do, but you might want to keep in mind that our kids are usually very visually oriented. This means that bright visuals on things that are better off being relatively invisible are not necessarily a good thing.  Save the visuals for the times that they count the most.

As usual, have fun and feel free to share this, but please keep the attribution.

Dear Stuart,

You'll read all of this some day.  Maybe you'll be old enough to understand.  Your mom and dad, like just about every set of parents in the world, really don't know what we're doing.  We try.  We fail.  We succeed.  Last week, you were teasing your sister.  I'm sensitive about that as I got teased a lot growing up and didn't care for it at all.  You and Alice were trying to negotiate what to watch on TV.  You declared that 'Backyardigans is a baby show."  I waited until you agreed and then I asked you to come have a talk with me.

We talked about why you thought that and you were pretty frustrated that Alice likes to watch the same things over and over.  I can understand that.  You have always preferred novelty.  When we talked about it more, I asked you how you think Alice felt when she watched the show.  Comforted.  Safe.  Happy.  I asked you about your animal blanket.  You said that you loved it and you were going to have it for the rest of your life.  Ah.  And how do you feel when you have your blanket?  Comforted.  Safe.  Happy.  And do you think that Backyardigans might be Alice's animal blanket?  And then I watched the light turn on.

You are a precious boy, Stuart.

I was at the MDSC annual conference today and in scanning the various tables set up, I found The Ten Commandments for Helping Parents of Children with Special Needs By Michele Stiefel.  A casual read makes it look like something for grand parents or other family members.  Reading it closer, I decided that was actually for me and Evie.  It is so nice to simply hear someone else say that it's OK to feel that way that we do, which may be all over the map on any given day.  Less so now than early on, but we still have our rough days.

The conference was good and it was nice to see the photo I submitted for the conference up on the big screen as well as on the MDSC facebook page.  This year the theme was Style Down Syndrome - an intentional owning and repurposing of a GC article that declared that Boston suffers from a kind of "Style Down Syndrome, where a little extra ruins everything."  I'm glad to see their constructive approach, including contacting GQ directly.  Dr. Brian Skotko posted a blog article about it that got a fair amount of coverage inviting GC to mock his pants and not his sister. I posted the story to Metafilter and found in the comments that the author of that particular gem is an ex-boyfriend of one of Metafilter's members.

This installment is easy.  Super easy.  So easy it's sitting right under your nose:

That's right, it's a box of tissues.  Around month 10 (give or take), children start to develop means-end behavior.  This is where they need to overcome a simple obstacle to get what they want.  You can start with a box of tissues.  Put it in front of your child and show how you can pull out a tissue.  Encourage her to pull tissues out.  Yes, you will have tissues all over the floor.  Yes, you will have the problem that you have now trained your child to empty any tissue box.  This will pass.  You are jump-starting language and cognition.  Are they enjoying it a little too much?  No problem - put your child in a high chair at a table and put the tissue box out of reach, but put a towel or cloth place mat under the box so that he can reach it.  Your child will discover, with encouragement, that she can pull on the placement and bring the box to her so she can pull out tissues.

You can get the same effect with a pull toy:

by putting the string just within reach, your child will learn to pull on it to get the reward of the toy.  You don't even need a pull toy - you can tie a string to his favorite toy and get the same effect (of course, you as careful parents wouldn't leave a long string on the toy for play without some supervision).

Also, remember those blocks from part 2?  Time to start presenting and hiding them under a bowl or a towel.  As your child develops object permanence, this will be a very entertaining game (as will be peek-a-boo).

Enjoy!

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:

Materials

A good quality hardwood.  Do not use plywood or MDF or other manufactured woods.

Instructions

Cut blocks to size.  Sand 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.

How To Use

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!

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

Fill each stocking with half the rice.

Tie a good knot in the stocking.

Put each stocking into a tube sock.

Tie a knot in the end of the sock (or sew it shut).

Socks go on each side of the baby, lifting shoulders and turning hips in.

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.

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.

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.