Happy Halloween!

…from all of our little pumpkins.

I did it!  This is the 22nd post this month.  I hope you’ve enjoyed our 21 for 21 Down syndrome Awareness Challenge.

“Subscribe” to Our Blog

October has been a lot of fun – with the “31 for 21 Down syndrome Awareness Challenge,” I’ve been able to catch up on posts I’ve been meaning to write, and I really do enjoy writing.

It has also been wonderful to read all the other posts this month, and has made me realize once again what a wonderful community we have.  I’m so thankful that we have the internet to allow us to talk with each other, read about each other’s challenges and set-backs, celebrate milestones and successes, share frustrations and offer support – and share pictures of our beautiful children!

Now that October is coming to an end, I probably will not be posting as often.  But, I have added a “subscribe” button to the sidebar, so if you want to receive an email when I do post something new, it’s easy to sign up.  (It’s right under the “31 for 21” button.)  Enter your email, then check your inbox for an email asking you to confirm the request.  Follow the prompts to confirm, and you’re done!

… or, just keep checking back here every few weeks.

Thanks again for reading!

Jesse’s Club Foot: An update

If you have a child with a club foot, check out http://www.clubfootclub.org/ – You can donate used orthotics to help kids in Uganda or Paupa New Guinea.

Jesse’s WHAT?

I know … I haven’t written about it in so long, you’ve probably forgotten all about it!

And that’s o.k.  He’s doing so well, that most of the time we forget about it, too.

If you remember, he did not have the tendon-lengthening surgery that is usually required to correct a club foot.  We did Ponsetti casting for 6 weeks, then full-time bracing until he could stand up on his own.

His first brace looked like little white lace-up ice skates, connected by a purple bar.  We had some trouble with these causing some rub-spots and pressure points, so we traded them in for the more stylish, more comfortable, more user-friendly – and yes, more expensive, Ponsetti brace.

Since we are getting our care through Shriner’s Hospital, all our care is free, though.  They even provide all of the braces, sending us a bigger pair of “shoes” every time Jesse outgrows them.  Shriner’s has even reimbursed us for our travel costs, and we are thankful for their generosity.

Jesse started standing up on his own at 9mo, so at that point, we switched to only wearing the brace at night.  Now, it’s just part of Jesse’s bedtime routine, and he accepts the brace without problem.

At his 12-mo checkup at Shriner’s, our doctor had to ask which foot was the affected one!  He told us that, at this point, Jesse’s foot is doing so well that it will probably be fine no matter what we do.

He said bracing probably makes a difference for a percentage of kids in the middle of the spectrum – but there are kids who will probably be fine no matter what, and kids who will need further intervention no matter what.  He said, “I can’t tell you to not put the brace on, but it’s o.k. to miss a night here or there.  If it interferes with his sleep, it would probably be o.k. to discontinue it.”

Jesse still does very well with the brace (and is sleeping through the night!!  Hooray!), so we’ve continued to put it on most of the time.

It’s really good to be in the “probably fine no matter what” category, though!

Our doctor at Shriner’s said we didn’t need to see him until Jesse’s 2nd birthday unless there were problems.  He also said that that will probably be the last time he has to see us!  (I think he meant “gets to” see us!)

For a review of our journey with this issue, here are links to some previous posts:  I’m surprised, as I look back, that these posts were just 1 short year ago.  Also – my last update was almost that long ago, too!

Matthew’s Evaluation: What I Wish I’d Known

. . . continued from yesterday’s post: Why is it Always So Difficult?

What I Wish I’d Known Ahead of Time

As I left for Matthew’s evaluation, my friend and neighbor told me, “Just remember: the fact that he can breathe on his own is miraculous … so everything he can do beyond that is just more frosting on his cake!”

1-day old, and not expected to live

Nevertheless, sitting down to go over the results was painful – and not just because we were sitting in chairs built for elementary school students.  Listening to the therapists and teachers read their reports about this percent delay and that percent delay puts him at whatever age equivalent … and the lists of things he isn’t doing yet but should be … the ladies were very nice, and tried to put everything into a positive light, but it’s still really hard to hear.

Now, I’m not one to take test results at face value.  Especially these – it felt so unfair, and the numbers just seemed wrong to me.  Even though Matthew didn’t perform his best, it still just didn’t seem right.

(Yes, I was the annoying student in school that would argue discuss a test question with the teacher – but only if it was unfair, and only if I was right!)

I’m also mathematically-minded, so I asked a lot of questions about how the numbers are reached and what they mean.

Our therapists used the “Battelle Developmental Inventory (BDI-II).”  It’s a common standardized test, which compares a child’s skills with typical kids (healthy, normal # of chromosomes) of the same age.

It works a lot like an old-fashioned video game, at least as far as the “age equivalent” score is concerned.  Each skill is systematically checked off, and in order to “advance” to the next age level, a child has to gather every “check mark” in the previous level.  If even one check mark is missed, he or she will be stuck at that level, even if he or she has many of the more advanced skills in the higher levels.

For example, Matthew’s speech is his area of most delay, so as soon as he missed a speech “check mark,” he was placed into that age level.  He can’t say his own name, so he’s “stuck” at the 12-18mo level, even though he has many, many of the skills of the upper levels.

Also, his sign language really didn’t “count” for any of the check marks on the Battelle Inventory.  Even though he has close to 100 signs that he uses on a regular basis, communicating much and often, the test couldn’t account for that.  (He got a “check” for “uses gestures to indicate what he wants,” but that’s it.)  We know that it counts, though!  And, as I mentioned earlier, it was good to get affirmation from a developmental pediatrician that Matthew’s signs really are good language skills.

As we were discussing Matthew’s results, I asked if there was any data concerning how kids with Down syndrome perform on these tests.  There is none.  We have no way of knowing how he is doing compared to his peers.  That’s when I asked the teachers what they thought – in their own experience, how well does this inventory work to evaluate kids with Down syndrome, and how “well” do kids with Ds perform on the test?  As I mentioned previously, I was told, “Oh – we’ve never evaluated a child this young with Down syndrome.”

Doesn’t exactly inspire confidence, does it?

With that said, here are my favorite results.  (I’m not reporting the language scores, the age equivalencies or percent delays, because I don’t care for those at all!)

  • Cognitive:  74% of skills needed by age 3
  • Social: 94% of skills needed by age 3
  • Adaptive: 82% of skills needed by age 3

Pretty great of a kid who was only expected to live a few hours, huh?

Matthew’s Evaluation: Why is it Always So Difficult?

Last month, just before Matthew turned 3, he had his evaluation through the school district.

I don’t know why it’s always so hard, but it just is.  And, I know from reading other blogs that it’s hard for everyone.  We all dread the evaluations, and getting read the results is even worse.

Maybe it’s because we feel that our child is being judged – and it feels unfair.  Or, that our child really didn’t perform to the best of his or her ability on the evaluation day, so the results don’t accurately represent what he or she can do.  Or, maybe it’s that we realize that every accomplishment and milestone is amazing, and standardized tests don’t reflect that attitude.  It doesn’t feel celebratory when you’re being read a list of “_% delay in this category, _% delay in that category…”  Besides, as a parent, we already know which areas are strengths and weaknesses … and we really don’t need the weaknesses pointed out over and over. Or, maybe it’s just that our child really doesn’t really “fit” well onto a form, doesn’t conform to the norms or standards that are able to be represented by a standardized test.

For me, it was all of the above, in addition to my own issues.  I always put so much pressure on myself to do well academically, to test well, to get really good grades, that all of that perfectionism comes back the minute I step into a “testing” environment.  It feels like I am being tested when Matthew is tested, because I am his mother, his teacher, and his caregiver.   I want Matthew to do well, I want all of his strengths to shine through, and I want the whole world to see how wonderful and beautiful and brilliant he really is!

It’s taken me a month to be able to step back emotionally, put my thoughts together, and write about the evaluation here.

First of all, why do the evaluation at all?  Well, it is required if Matthew was to continue to receive any services through the school district.  Even though we’ve opted out of the preschool, we have the option of receiving specific therapy at no cost to us through the school.  It’s also the only way to objectively track Matthew’s progress.  We’ll be able to look back at this evaluation in a few years and say, “Wow – look how far he has come!”  With our choice to keep him out of preschool, and most likely home-school, I wanted this benchmark in case we ever faced resistance and had to prove that he is learning and progressing at home.  So, in that regard, part of me wanted to say, “Go ahead, Matthew – throw this one!  Don’t show them all that you can do!”

Matthew’s evaluation was split into two parts.  The first part (cognitive, problem-solving, and social skills) was done at home, with his teacher that had been working with him all year.  In other words, it was a very comfortable, playful environment, and Matthew did really well.  He even surprised me with some of the things he was able to do!  I was so proud of him, and felt like the test went really well.

The second half of the test was done at the school – a new environment for Matthew, with teachers and therapists he’d never met.  The perfect set up for Matthew to shut-down, which is exactly what he did.  I can’t blame him, either.  Three adults firing questions at me from all directions, and taking turns asking Matthew to do things.  After only a few minutes, the speech therapist had him looking at pictures in a book, and said, “Can you point to the spoon?”  Matthew shook his head, said “no,” went to the far corner of the room, turned his back on all three ladies and played with a toy car.

O.k. – this is not going to go well.  He’s not quite 3 years old, he doesn’t like this environment, and he’s really not interested in spoons right now.  Ask him to point out a tiger or a monkey, and you might have better luck … but that’s not how standardized testing works.

After a few minutes, we were able to bring Matthew back, but he was still pretty closed off.  Even so, the physical therapist left half-way through the evaluation saying, “Well, even if he is slightly delayed, he’s not delayed enough to qualify for my services.”  WOOOOOO-HOOOOOOO!!!

I’m afraid the speech portion did not go as well.  Matthew didn’t say anything, which didn’t really surprise me.  His speech is the first thing to go when he’s placed in a new environment, feels uncomfortable, or is around people he doesn’t know – and this situation was all 3 of those things.  We already knew that speech was the area in which he needed the most help, though.

. . . to be continued