Re-defining Down Syndrome

A week or two ago Sheena (Hannah's friend and dance instructor) asked permission to write a post about Hannah.   Of course I was pleased; I was also curious.

I was almost expecting something about how Hannah was a "joy"--something a bit fluffy and superficial.  I've had years of people telling me how sweet/happy/adorable she is.  Everyone enjoys hearing nice things about their child; I am no different.  But frequently I hear a twinge of condescension in their voices.  stereotyping.  The old, "Those Down syndrome people are SO happy." line is not only old, but also inaccurate.

Am I jaded?

Probably.

My teen-aged person with Down syndrome is concrete, irritable, enthusiastic, crabby, obstinate, feisty, effervescent, exasperating, lovable, temperamental, funny, true, annoying, imaginative, entertaining, and 100% lovable.
Pretty much the same as everyone else with 46 chromosomes.

I know Sheena "gets" Hannah. I knew she'd have something valuable to share about her friendship/mentor-ship with Hannah.  I wasn't really worried about Sheena writing platitudes of sweetness, milk and honey.

My baggage of preconceived ideas of how people see Hannah shouldn't come into play.  Really, I'm just doing the same thing that they do.  If the worst pet peeve I've got regarding Down syndrome is society's inaccurate image of "happy people", then I ought to just be quiet about it.   It's just a slight annoyance, not a horrific problem.

(BTW, I think the worst thing society does is have low expectations.)

Anyway, back to Sheena.  She wrote her blog post. And it's interesting and amazing.

I cannot thank her enough for just thrusting Hannah into her dance class.  It seems to me that she orchestrated the best possible classroom environment possible--a variety of open-minded peers, incremental teaching, patience, high expectations, encouraging instruction.   And, I assumed, some sort of modified choreography.  But I learned from Sheena's blog that she didn't change a thing for Hannah.

Sheena's post isn't so much about what she has done for Hannah.  In fact, it's about what Hannah has done for Sheena.  That was what surprised me.

It reminds me of when Hannah was a baby, how I discovered that Hannah is a great teacher.  She led the way through all the murky medical and emotional waters we navigated.  I've sort of forgotten how much she's taught me, after all, I do fancy myself a teacher.

Make a visit to Sheena's blog.  See what she's got to say about Down syndrome defining someone's capabilities.

What's Going On?

Hormones hormones hormones.

At least, I hope that's what it is.

This girl is SO moody.   A few weeks ago, she was in her music lesson.  It's 30 minutes long.   She loves Miss Heidi.   She always goes in happy, and comes out happy.   But on that day, she went in happy, and 10 minutes later she came out in tears.

Through her tears she said she wanted to go to Great Wolf Lodge.   Miss Heidi was surprised.

I was confused.   We went to Great Wolf Lodge months earlier. Hannah liked it, but never really mentioned it again.   And now, suddenly, she was terribly sad that we couldn't go there right then and there.  Bawling.  Sniffling.

I comforted her first.  Got a tissue second.  Cleaned her up.  Deep breath. Big smile.  Go back to the lesson with her wet eyelashes sparkling.

Five minutes later, she was escorted out, again in tears.

This time I gave her the riot act.  She was creating this drama for no reason.   Totally random.

I'm a pretty no-nonsense parent.   I told her that she was acting inappropriately. That she needed to cut it out.  She had to apologize to Miss Heidi for wasting her time, and apologize to me for wasting my time and money.
Which, she begrudgingly did.  Her lesson time was over.

And a silent drive home--her choice; I had said everything I needed to.

While I was enjoying the silence of the evening, I looked up into the night sky and saw an almost-full moon.  It was just a couple days before the SuperMoon.

And I sighed.

SuperMoon.   Super PMS.    That's what it was.  Argh!

At least I knew the reason for the breakdown.

~~~~~~~~~~~~~~~~~~~~~~~~~
Besides hormones, something else is going on.

It's regular growing-up teenaged tension.

Last week Hannah spent some time at a friend's house while I was out.  By all reports she had a wonderful time. She was funny, polite and enjoyable company. A trip to the dollar store to get materials for April Fool's jokes.  All was well.  Until I arrived to pick her up.   Then she became snippy and grumpy.    Ahh, the power of the parent.  My mere presence is enough to set off a reaction.

It wasn't because her play date was over.  It was because I am her mother and I have the audacity to breathe. This I know because I've lived through it before.  She is my third child after all.  I probably even felt that way myself as an adolescent.

It really is quite entertaining.  Annoying too.

My friend who witnessed Hannah's behavior is thrilled.   She LOVES the fact that Hannah is so typically a teenager.  She is giddy over the idea!  

And I am too!

Except when I'm right in the middle of it.

Hannah has the eye-rolling technique down to a science.  The only part she hasn't figured out is that she should use that technique sparingly and with discretion.

Stepping back from the immediate drama, I can appreciate Hannah's position.  I am thrilled that she's growing up and stirring things up.  It's a sign of independence.

Just writing that sentence brought me back to something I said years ago.  I only recalled it because someone quoted me in an article when Hannah was seven.

 “We can’t wait for her to be a teenager, and cause some trouble,” says Beth L., laughing. “That will be a sign that ‘Okay, we’re on track’.”

I guess we've arrived.  I need to keep laughing.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

And on the topic of independence, Hannah is calling the shots these days.  Literally.

After trying to get chicken pox four times--unsuccessfully-- Hannah had a titer drawn to see if maybe somehow I had missed noticing a mild case of pox.   It was negative.  So it was time for Hannah to get the varicella shot.  

(I am not a fan of vaccines, especially 'optional' ones.  But since Kate was hospitalized for encephalitis from chicken pox with 107 degree fever at age 5, I have been watching Hannah closely.  I'd rather she have natural immunity, but I also know how difficult chicken pox is for adolescents and adults.)

So we stopped by the doctor's office on Monday.   In the waiting room, the nurse called Hannah's name.  Hannah stood up and said, "It's okay, Mom.  I'll do it myself."

And off she went.

She came back in about 90 seconds, smiling, with the nurse saying, "She's a pro!"

That's my girl. Growing up in many ways.  Brave, temperamental, feisty, and goofy.

Orthodontist/Medical/Adolescence and whatever else pops into this post

Yay for the new orthodontist! He is exactly what we needed after Hug-o-rama office. Dr. B. is a perfect match for Hannah's personality and mouth. He wants to try to see how much space he can create with just the braces rather than start her out with the palate expander. He was pleased that we homeschool because then it's easier to schedule some extra time at each appointment and Hannah won't be hurried. He spent lots of time chatting with her, and explaining about the molds he'd take the next time she visits him. He gave her some mold forms to practice holding in her mouth. This is exactly the kind of thing I regularly do with her, practice playing dentist or doctor so she is ready for the actual procedure.

Before she gets started with her braces she has to have a tooth pulled. It's a baby tooth that needs to get out of the way for the last adult tooth (which is trying to come in sideways). So we've got to meet with the oral surgeon. I know our dentist could do it, but I'd rather have a surgeon who could give her a little Versed to keep things sweet and comfortable. I like that Versed impairs short-term memory so she won't remember much of anything.

The last time she had Versed was for her tonsils. I had asked about anesthesia and they told me that first they'd give her an IV and give her Versed. I thought that was ridiculous because it would make more sense to give her the Versed orally and then give her the IV when she was already loopy. It's not like she would have had a problem with the IV, but what's the point of the Versed after the trauma of the IV? You might as well go straight for the anesthesia at that point instead. Anyhow, they did do it my way and it worked out great. (Oh man! Am I powerful or what?) (These are not the droids you are looking for.)

The night before heart surgery 2 1/2 years old

Hannah has been pretty healthy for the past five years or so. She nursed until she was 2 1/2 years old, and we started her on nutritional supplements soon after she had her open heart surgery. (I'll post more about the supplements later--I know there are many people who are curious and many people who are not curious, so I'll make that an independent post to read or skip as you desire.) Even with nursing and optimal diet, I can't say that she was healthier than any other young child with Ds--in fact, I'm pretty sure she fell into the sicker-than-most category. We did the antibiotic cycle plenty of times, and a few short hospitalizations for respiratory issues. She'd get a cold, but it would never leave, so she'd have a secondary infection. We did all the saline sprays and nasal washes, but she'd stay green and I'd eventually cave in and bring her in to the doctor. Within a day or two she'd be completely clear. Until a few weeks later when she'd get the next cold. She was sick the most from October-March.

As she grew, the illnesses became fewer and farther between. By age six she started being able to get over colds more easily. She was getting bigger and she was more efficient at coughing and blowing her nose. It also helped that we homeschool, so she wasn't around other kids all the time (we do, and did, lots of activities with other kids, but I was always around to make sure the hands were washed). She's done pretty well for the past 5 years, rarely on antibiotics for lung or sinus issues.

Age 6, when she was always dressing up that

spring horse of hers. Crazy girl!

Now her medical challenges run more along the lines of apnea and acne! She has been doing very well with her CPAP machine. I still put it on her after she's drowsy or asleep, but she is capable of putting it on herself. It's just a little bit sweeter to let her listen to her music and fall off to sleep. She takes care of all the rest of the details, removing her mask in the morning, unplugging the machine and taking out the humidifier. It seems that the mask is helping block some of her oil glands as well, so she has recently started getting a few pimples. I can't believe it! She's just 11...

Hannah is definitely on her way to growing into a young woman. Together we have been reviewing some books about growing and changing bodies. Hannah is very excited to begin her menstrual cycle, which we expect within this next year. She tells close friends that she is "growing into a woman". We use the words that we found in the "Bodies, Boundaries and Sexuality" book (still love it the best--even for preschoolers, don't be scared! Go buy it!). "Having your period each month is one way you can tell that you are healthy." I was so glad to have this explanation for Hannah because I really didn't want to get into the whole reproduction aspect of the menstrual cycle. Hannah knows about how eggs are fertilized and how babies grow, but I don't really want to have her assume that because she has her cycle that she will be able to have babies. I know that women with Down syndrome can be fertile, but at this time I am not thinking that becoming a mother is in Hannah's future. Not having to discuss eggs and the reasons for her period is a good thing right now. In a few years, when she discovers boys and has more questions about relationships, it will be a better time to discuss these details of reproduction in depth.

It is so helpful to have Kate around to follow through with these discussions as well. Hannah looks up to her siblings very much, and both Kate and Chris take their roles pretty seriously (and make sure she gets her fair share of sibling teasing as well). What will happen this fall when they are both gone?!?! Maybe I need to get an exchange student. Anybody want to get rid of their teenager for a while?

Gearing up for the big Eleven!

Tomorrow is Hannah's birthday, and she is getting very excited. I think that she's learned more about the calendar this week than in her entire life!

Packages from grandparents have been arriving, party favors purchased, cake decisions made, restaurant chosen, and grins abound! I still have to wrap presents and get a few ingredients for the cake. And come up with some back-up activities/games for the party on Saturday. She is expecting nine friends to come.

This year Hannah wanted a sports party. I've mentioned before that she is my only child who is interested in organized sports. She doesn't like to watch sports on TV, she likes to play them. She currently takes a dance movement class and swimming lessons. But soon both baseball and soccer season begins and she's been chomping at the bit. So, for the party, we've rented an indoor sports facility (good thing, cold rain expected here); kickball, soccer, relay games, Moonbounce, etc. will be on the agenda for the Saturday. I'm one of those moms who always has parties at home. I think we had one other party out of the house, because we had new carpet laid and the house was for sale. It's strange not having to plan. It sort of doesn't feel like a party. Or at least, it doesn't feel like one of our parties (less work for Mom!!). But Hannah will enjoy this very much.

The weird part about sports and Hannah is that she is not particularly well coordinated. Yet she is better at baseball than I am (which isn't saying much...when she is clumsy I often say she comes by it genetically, and I mean from my gene pool, not her bonus gene pool!). She LOVES to play in the yard with James (he's the designated sports parent, primarily because he does know how to throw, catch and kick, unlike the rest of us).

I can easily say that gross motor skills are not her strength. She comes from a long lineage of uncoordinated people (on the maternal side). She still marks time going down stairs (taking one step at a time rather than alternating feet). She cannot carry much up stairs because she needs one hand to hold on to the railing for stability. She has orthotic inserts in her shoes (no more AFOs!) which help her keep her pronated feet aligned. Her right side has always been weaker than her left (when she was a young baby she rarely used her right arm and her head was always flopped to the right, since the muscles on the right side of her neck were weaker). We worked hard with physical therapy to balance her out, and if you don't look too closely, you'd never really notice anything, other than she's physically slower than most kids.

When she was about three years old we stopped Physical Therapy (PT). We wanted to focus more on her speech and cognition. When she was five years old she had a set of evaluations (gross motor, fine motor, cognitive testing, etc). So she had not had PT for a couple of years. Now, any parent of a child with a developmental disability will tell you that even though tests don't truly measure important things (like how funny or compassionate or hardworking or full of love an individual is), sometimes the scores really feel like a kick in the stomach. We know that "it's just a snapshot" and "it's a new testing environment"; we know all the excuses. But it still is a difficult time when the statistics say that your bright, delightful, charming five year-old child has the physical skills of a 20 month old. Or fine motor skills similar to a 2 year old. Or two years behind on speech, or whatever the scores of the day reveal. They can knock you down.

But, this time, when the results came back that low, I really didn't care. I saw what skills they tested, and I saw how miserably she failed. No, she could not jump with both feet 3 inches off the ground. No, she did not know how to throw a ball underhand 6 feet and hit a target. No, she could not walk on a floor level balance beam or strip of tape. But I discovered that I didn't give a hoot (actually, I think my words were more along the lines of not giving a "rat's @#$"). None of it was relevant to who Hannah was, or who she would or could become. I knew that her lack of aptitude for jumping would not determine what kind of job she would get as an adult. I knew that she would not need to throw a ball a certain distance to take public transportation to get to church or a friend's house. I knew that she would not be required to walk on a strip of tape when she shopped for her own groceries. Really, none of it mattered at all.

What we're after for Hannah is meaningful relationships (with God, family, neighbors, friends, sweethearts, spouse, who knows? Why not?), as much independence as possible, fulfillment in her chosen career, and a feeling of belonging to a community. That's what we want for each of our children.

Hannah has no idea of her challenges. As far as I can tell, she has a pretty good self-image. She thinks she's a terrific swimmer, a good baseball player, a capable soccer student. She is motivated. She's got a better attitude than I do most days. Well. Maybe not, depending on the tasks of the day. But she's willing to do the work. And there is no test that measures enthusaism.
So we leave the First Decade of Hannah, and enter into more adventures, more friends, more opportunities to jump higher than we did before, in a Moonbounce. I'm sure she can get 3 inches off the moon.

Not First Day of School

Public school in our area started on Tuesday. Hannah had a doctor's appointment in the morning, for a physical. She has to enroll in public school to get weekly speech therapy. We have to go through all the hoops a regular student has to go through to be enrolled, even though she isn't actually going to school. Virginia is pretty nice to homeschoolers, comparatively. They offer speech to all students if they qualify for services. That's not the case in North Carolina...well, not quite. In NC you can receive speech if, and only if, the student is speech impaired. That means that the student cannot have any other deficit to qualify--no fine motor impairment, no gross motor delays. The classification must be "Speech impaired", not "Developmentally Delayed" nor "Mentally Retarded". Things like this vary from state to state because there is a certain amount of federal Special Ed money that must be used to provide services to non-public schooled students, and each state gets to choose how to use it. I understand that homeschoolers in New York are actually considered public school students, so they can get a whole array of therapeutic services. Of course, they have to jump through lots more requirements to homeschool than I'd ever want to do (please don't make me create a portfolio!!! No quarterly reports!! No outside evaluations!! I could barely fulfill the standardized testing requirement in NC when we lived there. I'm just not cut out to follow the rules I guess!).

Anyhow, she had the check-up, which she enjoyed--because anything medical is fun. Hannah is 58" tall and weighs 84 pounds. That puts her in the 75%tile for height and the 65%tile for weight. She is in Tanner Stage 2, which gives us enough time to work on our Health unit study to learn more about how a young woman's body develops (doctor estimated about 18 months to go!). There is a great book for this specifically for kids with Down syndrome, if you can believe it.

"Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality.
A guide for Parents and Professionals" by Terri Couwenhoven, M.S.

I bought it last year, thinking that I was being a little premature, but it actually is appropriate for parents with preschoolers on up. Lots of good information for setting the stage with terminology options, appropriate touching and a great materials in the appendix. I am not usually gung ho about the other books in this series (all by different authors, focusing on fine motor, gross motor, teaching reading, math, etc), but this one is really easy to read and understand.

As for the physical, Hannah is in good health, obviously growing well (it's practically unheard of for a child to fall on the typical growth charts, individuals with Down syndrome usually fall into the 3rd percentile or below for height), and only needed referrals to a pediatric orthopedist (need new orthotics), and ophthalmology. Of course, we've already got the neurologist lined up for late October to see about a bi-pap machine for Hannah's continued apnea.

After the doctor, we went out for lunch. Hannah wanted to go to a playground. This area stinks as far as playgrounds. The nearest one is about 25 minutes away. I'm not kidding! There just aren't any county parks around here. Since most of the population was in school, and it was 92 degrees (sorry Kate! It's already sweater weather in Minnesota!) I decided to find one of those indoor inflatable playgrounds that are all around this town (there are three that are closer than the nearest park).

When we arrived, there were no other customers, so everything was deflated. If you're not familiar with these kinds of places, they are usually in an old big box store, or in a simple warehouse (I've only been to one other, and it was a bit depressing). This one, Inflation Nation, is fairly new and clean (and you'll be glad to know that the prices have not gone up. Just a little economic humor for you, one more free service I offer with a visit to the blog). We really liked watching all the slides inflate!

Hannah carefully chose her first adventure. It was a bouncy race car track with obstacles.



Then she surveyed the more adventurous options.




I think that she got more physical exercise in that 90 minutes than she ever got during any therapy session. And since PT isn't covered by our insurance, we definitely got our money's worth....$7.99 vs. $210. And I'm sure she had more fun.