31 for 21: Pizza Friday and Puppies

Elise loves Pizza.  Perhaps with a passion that most people cannot comprehend.

She wants it for any celebration for the rest of forever. 

Whenever I asked what people wanted to eat, it was always pizza.  If the answer was "no", it was followed by massive weeping and huge depression.

About this time last year, I discovered that if there was anything Elise liked more, it was expectations.  She loves a constant schedule.  I think this is a primary reason she likes school.  I am not a schedule person.  It does not make me happy.

BUT I don't like constant sadness, either.  So we implemented Pizza Friday.  She had a constant expectation that she would indeed get pizza, without fail on Friday, but tonight is not Friday.  She could make peace with that, Friday nights became no-brainers, and the rest of the kids thought this was marvelous.

It has encouraged us all to enable more routine, and it has made it our lives much nicer...I have even bought a planner.  *gasp*

 

 

 

Today, October the 3rd, 2014, marks another shocking milestone.

 

Today I was able to march into a regular store, with no list or angst, and purchase Elise's birthday presents.  And I know, with no reservations, that she will love them.  And play with them.

 

This may be a weird piece of information, but Elise doesn't really play with toys.  She likes toys, but has very few that she interacts with and takes pleasure form.  About once a year, she figures out some aspect of "play" and life improves drastically. 

 

She is turning 12 at the end of this month, and what has she been pining for?  A Nerf Crossbow.  For about 6 months.  I cannot wait to present it to her.

 

I also found this blast from my past, Puppy Surprise:

It is a pregnant puppy.  You open its Velcro tummy, and get a secret number of puppies out.  It's a little freaky, but for someone who is obsessed with matching and family, it's going to blow her mind.  And its name is Popcorn.  Another one of her favorite things.

I'll post pix of her receiving them, but for once, I am really, REALLY excited to see her reaction!  :)

As always, her birthday reminds me where she is not, compared to her peers, but, every single year, we can look back and see some major strides in some aspect of her development.  And we quite honestly party!

This year, we are PLAYING!!!

31 for 21: Angels

I have totally hit this one a thousand times.  I am sure I will hit it again another thousand...

If I hear "Oh, you have a child with Down Syndrome?  They are SUCH angels!!!"  again.....

Well, I'll sigh and tell them my kid is just like theirs...she rolls her eyes at me, she ignores me, she talks back to me, she snitches food out of the pantry and lies about it...pretty standard for any 11/12 year old...  Not really that much of an ANGEL.

But I do have to bring to the fore a thought I had yesterday...When I was thinking about their drive to live their lives like everyone else, I am reminded that they also tend to celebrate...a lot.  Which is, I think, why people think that they are such angels...  Which made me wonder why they seem take the lion's share of celebrating?  I think it comes back to my commentary yesterday, on the needfulness of trying harder than the average bear to succeed in their plans for life?  I think the world thinks they are angels because they are triumphing more, because they are more aware of their goals, because they have to work harder and have more pressure than most.

Pro soccer players or those at the World Cup, for example.  They play the same game as my 8 year old niece.  The plays are almost identical.  The goal, certainly is.  To win.  But their celebrations... just...wow.  I cannot say in all the years of watching soccer games in high school or watching my own kids, have I seen this: 

 

And my sister-in-law hasn't posted any pictures of my niece like this:

 



I propose that the celebrations that almost all the people I know with Down Syndrome indulge in, may not come from an angelic sense, nor from a child-like comprehension, as much as an exaltation of success or inclusion...against a hard fought battle...after a long, excruciating, physically demanding, and soul-sapping battle.

They might just be reveling in victory. 

Which only earns them angelic status, if you want to go the flaming sword route...which, I wonder if it gives you as much pause, as me?

31 for 21: Awareness is a stupid word.

Awareness is a stupid word.

There, I said it.  This is my annual blog challenge, of making a post every day in honor of October being Down Syndrome Awareness Month. 

I know this is silly, since I just promoted Childhood Cancer Awareness Month.  But it's a little different, stay with me...

Some awareness months make more sense.  Like:  "Hey, it's important to make sure you are aware of how your body works, so you can make sure you aren't broken."  Breast cancer, heart attacks, prostate cancer...stuff like that.  Also, awareness that promotes being involved to help research funding, that is reasonable.

Others are dumb.  "Hey, something like this exists outside of you and your circles of 'normal'."  Most people already know that.  You know how I know?  Because my kid gets crooked looks whenever we go out.  Anywhere.  People are darn sure aware she is different.  They may or may not know why, and the medical jargon of what causes her to be different is almost worthless at changing perception.  That eliminates only those who think they might catch her different-ness.

I am also aware that I am not 5.  I cannot catch being 5.  I understand what causes being 5.  I understand that being 5 is different than being 38. 

So.  Big whoop.

I confess, I am spoiling for a fight, a little, this year.  I am done begging for you accept that my gal exists and I am proud of it.  I am requesting that you choose to understand, and better your life for the knowledge.

If we did say, Down Syndrome Celebration Month, or Down Syndrome Appreciation Month, I think I'd be more excited.

Being aware that somebody is 5, is different that appreciating what it is to be 5 and the magic that inviting a 5 year old to share their perspective in your life.  5 year olds can play with abandon.  They don't care what people think.  They can create anything, they suffer no barriers of why something could not work.  They get excited by things that you take for granted.  They get ecstatic about things that annoy you.  They aspire to do the fantastic.  Their imagination is limitless.  They are lucky.  You should aspire to incorporate their "joie de vivre" into your dumb, boring, "adult" life.

Being with a 5 year old invites their perspectives to unravel your barriers, to grow you past others' strictures on you, and to reactivate your imagination.  It's terribly cool.  And you are reminded what you valued when you were 5.  You are refreshed.  (After you sleep off being tired from growing and changing so much, so fast, of course.)

Well.  Guess what?  Being with someone who has Down Syndrome can regenerate things in you, too.  They are awesome.  They are remarkably like other nice, boringly normal people. 

Because of all the medical jargon, they have to fight a little harder for "normal" and it may take a little longer, but they can achieve what you can.  But because the achievements in their lives were a little more like a Spartan Run, instead of a rolling walk through a meadow, their triumph is palpable. 

Because their training for the Spartan Run of life was more rigorous, they may be more focused and aggressive and (dare I say it?) stubborn.  They are also people.  Tired, pushed, and aware.  And they want to achieve what you do. 

Guess what?  You need to take this October to understand their training, their battle, and swear to come along side and cheer.  And sign on as training partners.  Offer experiential advice.  Offer support.  Offer water. And see the mud in their lives as a sign of their mammoth achievement, not as a sign that you are better or different.  See it as a sign that you should give your respect.  Offer camaraderie, not pity.  They don't need that any more than a rock in their shoe.  If all you are going to do is stick rocks in their socks and put obstacles in their way, get out.  And know this, when they overcome your barriers, which they will, you won't be making them look bad, you will look small and selfish, and they will look triumphant.

So.  Forget awareness.  Sign on for appreciation or celebration.  Or accept that your life will be the less for not "accepting" them.