Day 7: Don't Give Up!

I've had a few opportunities to talk with the parents of older children (high school age) with Down syndrome over the last couple of years, and I am invariably frustrated by the conversations when the topic invariably comes around to school.

It often seems that the parents have given up (please forgive me, and correct me, if I'm wrong about this!), aren't fighting as hard as I feel they should, to get their child the best in education and services that they could.  They give off an air of being somewhat jaded, for lack of a better word.  Like they'd been the idealistic parents, at one time, that I and my peers are now, but had grown weary of the fight.  You'll see, they say.  I don't want to see.  I don't want to be those parents.  I will never give up.  I don't want every day to be a battle, but I also don't want to ever feel that I am not in control of my daughter's education plan.  Yes, I know there will be those situations in which we'll be told "can't," but the idealist in me still plans on hearing "won't" which holds so much more hope and possibility.  Like appealing to the right person in the right way will show them that our idea is better. 

I know I'm being vague, but it's one of those things that causes so much uneasiness in me and I just wanted to get it out there.  I guess I'm mainly referring to the type of classroom environment offered, and the abilities of the already over-worked teachers to educate our children.  The availability of aides in the class, the number of pull-outs.  Here I am, already obsessing about Kindergarten, like it's the be-all and end-all for the rest of Samantha's school career. And now I add my fears about high school into the mix.

If you are a parent of a high school aged child with a disability (and even if your child is younger!) please comment and tell me that I'm wrong, that I just happened to be talking to the wrong people, that you're not all giving up.  Tell me how you get what's best for your child, how you know when to back down and how you know when to push.

Day 6: Wednesday Whimsy: Let's Dance

Thought I'd lighten things up a bit today and take a break from the book-writing.  Snapped off a couple of shots yesterday before school (again, have I mentioned how much I hate flash photography?!  Must ask Santa for another lens for Christmas...).

Welcome to my room!

I like to dance.

Come, join me!  (nice, unflattering picture, Mom!)

Eh, Olivia's a much better dancer than you, Mommy.





Day 5: I Do It!

Dave Hingsberger, at Rolling Around in My Head, blogged last week about how he feels like sometimes he's speaking a different language altogether from most other people - A New Language called "disabled."  Let me preface this by saying the word "disabled" leaves a bad taste in my mouth.  I feel like my daughter has a disability, but truly don't feel that she is in any way disabled.  Just wanted to get that out there.  But that leads into this post. 

Dave tells how people aren't listening to what he is actually saying.  Someone could say, "Let me help you," and when he declines and says he's trying to learn how to do whatever-it-is himself, they seem not to hear that, and carry on trying to "help."  What they're hearing is "I am disabled, please help me."  What they are not hearing is what he's actually saying: "Stop - I need to do this myself."  People mean well.  In misguided, impatient, overbearing, over-zealous, martyristic and selfish sorts of ways.  And this doesn't only apply to the "disabled," (or differently-abled as I prefer) it also applies to children, with or without a disability. 

I do it.

There are a variety of reasons that I do it, not the least of which is that I'm impatient.  I have thingstodoplacestogopeopletosee.  No time to wait as Samantha carefully navigates the staircase, pondering each foothold, perhaps becoming distracted by the cat passing by, making his way in the opposite direction.  Ugh, let me pick you up.  See?  It's so much easier, and faster.  But it served no purpose other than to fulfill my own, very short-term goal.  The longer-term goal would be the confidence and stability Samantha would gain by being allowed to raise her weight from stair to stair, holding on to the railing for support, not to mommy.

One other big reason that I do it is that I (cringe...) ASSUME (oh, how I hate that word) that Samantha can't do something.  That's right.  Making an Ass of U and Me, Samantha.  And you'd think I'd learn the first dozen or so times that You. Showed. Me.  You showed me that you certainly could do it, and didn't need any help, thankyouverymuch.  You pushed me away and said, "I do it!" 

I LOVE this stubborn independent streak that Sammi has.  It's feisty and forceful and does so much to build her self-confidence.  And, after all, isn't that what we really want for our children?  Self-confidence and independence?  That's what will ensure that she can fly.  Go places, do things, make friends, have a productive and fulfilling life.  Granted, she can't always do the things she thinks she can, but she sure can try!  And when she finds herself stuck, she asks for help.  And that's when it's okay to step in, to help her.  And I just need to listen to her.  To actually hear her when she says, "I do it, Mommy."

Day 4: Trying Too Hard

Sometimes I feel like I try too hard to ensure that Samantha is having great and varied experiences.  I'll read the blogs or Facebook posts of other people and wonder, "why can't we do that?"  For example, people will take their young children (including those with Ds) camping, or to ball games, or hiking, or to music festivals.  And I'll just think, "no way on Earth will Sammi sit still for that," or, "she'd have a meltdown - not worth chancing it."  But I think we should.  Lastnight we watched a sitcom rerun where a married couple accidentally picks up the wrong family's pictures at the drugstore photo-processing counter.  They become obsessed with the idea that their lives are dull and that they should try to do all the wonderful, adventurous things the other family did.  So they tried, and felt rediculous.  They realized that their lives were rich enough with the experiences they had, mundane as they may seem.  A pretty timely program to have watched after yesterday, but I didn't actually realize it until now, as I write this post.

So I do try to take Samantha to different places, but her difficulty in transitioning often leads to frustration for me, and, what I perceive to be torture for her.  Granted, she's certainly better than she used to be.  And sometimes she really does have fun.

Yesterday started off well-enough.  It was probably the most beautiful day we've had in about 4 months.  I had gotten her pretty excited about going to a pumpkin pick on a farm run by a lovely family who open it up to our Down syndrome association every year for a day of festivities and celebration.  Her aide, N., came with us.  I'm always happy to have an extra set of hands, and thank goodness I did yesterday.  Samantha, who has remained dry for all but sleeping hours for the better part of a few months now, fell asleep in the car on the long ride to the middle-of-nowhere.  She was wearing a pull-up (I haven't gotten brave enough to eliminate them yet).  She was soaked when we got there.  Sopping wet.  Complete nappy failure.  And, horribly ambitious (?), optimistic, unprepared mom that I am, I didn't have a change of clothes.  Or a clean pull-up.  What kind of mom does that???  Ugh.  So N. stayed with Sammi at the car while I ran to the group to filch off the good-graces of a few folks with kids that may be approximately Sammi's size.  Bingo.  A fresh pull-up and a pair of pants.  Hooray! 

Next adventure of the day, a still-tired, super-cranky child who became obsessed first with cookies, then with an open police car, set up to allow kids to explore.  Pulling her away and re-directing her from both was not pretty.  But we were there to take a hay ride out to a field to pick pumpkins, and damnit, that's what we were going to do.  That was the wonderful experience I was bound and determined to make for her.  Here was the result:

These photos really, really pain me.  I feel so guilty for dragging her out there, forcing her to pick out a pumpkin, forcing her to sit for a photo that she didn't want to sit for, but that I wanted to have so we could see later what a fun time we had.

I'm pretty sure PMS fueled some of my own crankiness and insistence.  But it's not like she didn't have any fun at all...there were moments, mostly captured by someone else's camera, since smiling for mommy was not on the agenda. 

By the time we got back to the car, we were all completely done.  Nothing could possibly feel better than to sit in the air conditioning and get the heck home.  Except a quick need by Samantha for the portable potty I carry around in the trunk.  As I loaded up the car, N. pulled Sammi's pants down to situate her on the little toilet.  Unfortunately, there was a miss, resulting in the soaking of the borrowed pull-up and the borrowed pants (sorry, Heather!  They have been re-washed, though...), and there was a bottom-less ride home.

Sammi's gauge of how people are feeling when she suspects something is amiss is to ask, "you happy?"  On the ride home, she said, "N., you happy?" to which N. replied, "Yes."  N. said, "Sammi, are you happy?" to which Samantha replied, "Yes.  Mommy mad."  Yikes.  (Reassurances to the contrary followed, btw.)

When it rains, it pours.  I know I probably just need to chill out a bit, take the time to smell the roses.  Put my camera away...? 

Nah.

Day 3: Down Syndrome Pregnancy

Today, I'd like to share another amazing, long-overdue link:  http://downsyndromepregnancy.org/

This new website and free, downloadable booklet complete with the beautiful photographic artistry of Conny Wenk and Kelle Hampton, is available for parents pursuing their pregnancy after receiving a prenatal diagnosis of Down syndrome.  It provides all of the information that should be made available by doctors but rarely, if ever, is.  I know most of you Ds bloggers out there hope that new parents or newly-diagnosed parents will find your blog and, within, find information, solace and support.  I hope that each of you Ds bloggers out there will post this on your blogs and put "Down Syndrome Pregnancy" in the title of your post so those that happen to Google those three terms together (not an unlikely scenario) will find your post and, in turn, find the link to this amazing resource.

Day 2: "Difference is an Artist's Game"

I saw this on Zoey's blog, Little Wonders, yesterday, and thought it was too good not to share.  Please take the time to watch this video by Clara Sigmon.  She combined an essay from an 8th grade English project with a film project for another class.  It was also a selection at the Rappahannock Film Festival in Virginia in 2008.  She has a beautiful and unique way of looking at the labels and stereotypes that society puts on people, and especially her brother, graced with the extra 21st. 

Let's Raise Awareness, One Day at a Time!!

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For those of you that didn't already know, October is Down Syndrome Awareness Month.  Not like every day isn't a teachable moment, but having this designated month gives us the opportunity to join forces and raise awareness in a big, concentrated effort.  For bloggers, this effort can be made by stepping up to the challenge of crafting a post on each of the 31 days of October.  31 days for the extra 21st chromosome that makes our children and loved ones with Trisomy 21 (that's Down syndrome, folks) unique.  31 for 21.  Get it?

I have seen this blog challenge and others like it come and go over the last few years.  They came to my attention, and they went out of my reach.  I knew I wouldn't be able to keep them up.  But this year I pledge to really, really, really try to keep it going, to provide my daily dose of awareness.  Not sure what form those posts will take yet - they may be a photo, an amusing anecdote about Samantha's escapades, a factoid or two about Down syndrome.  Perhaps they'll be a motivational news article, or one that makes me sad.  I might even just link to someone else's post if it's moved me to share it (Possible Translation:  if I'm not feeling creative or bloggy enough to write my own...).

I'm excited to give it a go.  I hope you'll help support me in this - share, share, share!  Spread the word.  Let's let the world know about the special 1 in 733 people out there that are enhanced with that little extra something, who deserve to have a life like ours.