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Her learning curve is just so big.

And I think so is mine.

There have been so many times this past week that I’ve thought to myself, “I only had to tell Reid [insert safety violation/warning/reminder here] once when HE was a toddler.  When is SHE going to get it?!”  And for whatever reason, this past week has found me reacting poorly, tangled in a knot about what to do next that I feel completely unsure at times.

The other day we were at my friend’s house, bidding her a’dieu on her move, and I really wanted to just talk to my friend and let Ava play.  But Ava was a complete and utter nightmare: running all over the place, having mini-tantrums, cornering my friend’s daughter because she was just so keen on hugging and kissing her.  It was like a fire was on inside her and I could do only my best to keep it semi-contained.

Ava’s fire is a wonderful thing if you really think about it.  Her stubbornness, her glory of life, her attraction to so many people and her unabashed joy in the things so many others find simple.  But sometimes, for me, it seems like it’s way over the top.  Like if Ava were to slow down every once in awhile (aside from when she’s sleeping) that she could capture more of the essence of life, get along better with her peers and brother and me, for that matter.

But her fire keeps on raging, at a pace that can be difficult at best to keep up with.  My inclination is that she should adjust to us, me.  But is that the correct assumption?  Is it in my right or purview to tone her down to my comfort zone, or is it better that I eat it and step up to the plate and come to her level, embrace her fire and figure it out for me?

And is that dangerous–me conforming to her and not vice-versa?  I really don’t know.  All I can say for certain is that I feel, strongly, that I am entering new territory here.  I’m unsure how to proceed.  Do I extinguish her flame in exchange for a more docile, agreeable girl?  Or do I embrace her seeming insanity and just roll with it?

So I joined Facebook earlier this week and let me just say, I haven’t been quite this addicted in a LONG time.  It’s really pretty strange–pretty much everyone, and I mean everyone, that I’ve thought about in the last 20 years is on there.  Absolutely crazy.  And so I can “invite” them to be my friends, and they can “accept my invitation” and then you can send notes back and forth, find out where they are, what they’re up to, pretty much anything they’re (I’m?) willing to share.  It’s kinda cool and kinda scary all at the same time.

I first noticed them signing while I was waiting to board a flight from Denver to San Jose. One was a tall, skinny, balding white guy about my age and the other a black boy who was maybe 10 or 11 years old. There was nothing extraordinary about either except that they were signing. It became clear that the kid was bound for my flight, and that the adult was dropping him off before he went to catch his own flight to somewhere else. I watched their conversation as intently as I could, hoping to catch something of it. My ASL skills were too poor and slow, and I managed only to snatch the word “mother” and some obvious “you” and “I” signs. The boy pre-boarded the flight, and I stood waiting, thinking about my own experience with ASL.

Amy, Reid and I started learning American Sign Language as a method to communicate with Ava. As Ava has grown, so as my skill with ASL, but it’s very fair to say that I can only manage “toddler” ASL. Amy and Ava are much better, and Reid’s skills are stronger still. I’m very grateful for learning it, for it was only through ASL that we learned of Ava’s advanced reading and receptive language capabilities. Even though Ava has Down syndrome and is very delayed with her speech, we discovered that at age 3.5 she was reading at a kindergarten level. Without ASL, Ava would have been a very bright child trapped without much ability to express much beyond frustration.

I boarded the Southwest Airlines jet, and began to look for a seat. I noticed that the boy was sitting by himself near the window in a row toward the front of the plane. I took the aisle seat in his row, hoping that I might work up the courage to test my ASL skills and attempt to communicate with him. At the very least, I thought, I might be able to help him if he needed it. I sat surprised at my nervousness and at the level of adrenaline coursing through me. I leaned over and got the boy’s attention by tapping him on his arm.

I signed, “I. Know. Little. A. S. L.”

He got a pleasantly surprised look on his face and signed, “Thanks.”

I signed, “I’m s-e-a-n.”

He smiled and signed, “r-o-b-e-r-t.” At least I think that’s what he signed. I’m quite sure, but I was so nervous and shocked and giddy at the prospect of actually signing with someone that I almost forgot to muster the considerable concentration required of me to recognize even his slowly manipulated (for my benefit) finger-spelling.

I gave him a “Hi” sign and he returned the favor. Relieved that I had accomplished that much, and eager for a break from the anxiety of my first signing communication with anyone outside my family, I took the opportunity to settle into my seat. Robert seemed a typical kid of his age, and wasn’t terribly interested in conversation. Again, I was partly relieved, having sustained a high degree of anxiety that he would be frustrated at my lack of communication skills. When the flight attendant came by for drinks, I asked him if he wanted one. He said yes, but only shrugged when I asked him what he wanted. The flight attended suggested a Coke, and he agreed.

That pretty much summed up the majority of our communication, except for his nod and my wave when he departed. But it was enough for me. I can only hope that I helped eliminate some of his travel anxiety if he was feeling it. Robert gave me an expanded possibility for communication. And he gave me yet another reason to be grateful for my little girl, Ava.

While on our recent trip to Illinois, we went to the Antique Tractor Festival, complete with tractor pull contest (my first), in Oblong, IL.  Yes, Oblong, Illinois, is the only Oblong.  The playground at the county fairgrounds actually had 2 old-style merry-go-rounds.  Those things still go really fast!

A good time was had by all.  Oh, and ideas began….  (Click on the link above to learn more about that.)

Watching the old oil rig engines.

I have no idea who these people are, but love the photo.

Reid's "gimmie Lego" cap

Gratuitous photo of Ava completely out of context. She was not much into the tractors.

This acronym has been used in my family of late, most recently to describe my nephew’s arrival at college.  It is also very appropriate for the little man in our family.

After a lot of transition last year, Reid certainly had a few days in kindergarten that were less than stellar.  So at the start of this school year, I was admittedly a little nervous for the first day of first grade.  The FIRST time, ever, he’s been “on his own,” if you will.  On his own to stand in line for class, go to lunch with all of the big kids, follow the rules for the bells when recess is over, etc.

Last week, when we went to Blossom Hill School to find out who his teacher was, he was really excited to know no less than 5 kids in his class.  And good friends at that.

Monday morning rolled around, and he was ready and rearing to go.  A little anxious, I could tell, but putting on a very brave face.  When we found his class line, he was thrilled to see his friends, hugged several of them, and off he went.  I drove by the school later that day and blew him a kiss from the car, wishing him a great first day.

Well, I’m pleased to say that at pick-up on the first day of first grade, I asked Reid, “How was your day?”  And you know what he said?

“Mom…it was AWESOME!”

Go Reid!!!  My Big Man on Campus.

She did it, she did it, she did it!  Ava pooped for the first time in the potty!  I’m gleeful!

Tonight, as I was helping her get ready for bed, she got that sure look on her face.  ”A big one is coming, Mom,” she might have said.  It’s unmistakable when she has to go, and when she goes, she really goes. 

As she was gearing up, I asked Ava: “Want to go use the potty?”  Sure enough, she got up and walked to the bathroom quicker than me.  When I got there, she was sitting on her potty, holding on to the sides and going for it.  It took awhile, as it usually does, but this time it was without tears, cries, or any other signs of distress.  She just sat, pooped for awhile, and then said, “All done.”  Wiped herself for awhile, and then I helped, too, mom that I am.

I gave her a huge high-five!  She had a great big smile on her face.

When we got back to her room, while putting on her jammies, I asked Ava if she thought she should be done with diapers and wanted to be a big girl now.  She said “yeah, all done.”

Yeah!

Gifts video on YouTube

Every time I read the High School Speech (just below), it makes me get all knotted-up inside.  Knotted-up with pride for Ava, with all of her accomplishments, joys, challenges and tenderness.  It makes me want to act.  It makes me want to blast, at full volume, John Lennon’s “Power to the People!”  And dammit, it makes me want to kick ass on Ava’s behalf, and everyone else with a developmental disability.

So here’s to a stronger commitment from me to do just that.  To make the world a better place.  To get even more involved.  To share the love that I, one of the lucky ones on this planet, get to experience from a girl like Ava.

I’m nothing less than proud that she is my daughter.  I can only hope that, one day, she will be proud of me, too.

By Soeren Palumbo

I want to tell you a quick story before I start. I was walking
through hallways, not minding my own business, listening to the
conversations around me. As I passed the front door on my way to my
English classroom, I heard the dialogue between two friends nearby.
For reasons of privacy, I would rather not give away their race or
gender.

So the one girl leans to the other, pointing to the back of a young
man washing the glass panes of the front door, and says, “Oh my gaw!
I think it is so cute that our school brings in the black kids from
around the district to wash our windows!” The other girl looked up,
widened her slanted Asian eyes and called to the window washer,
easily loud enough for him to hear, “Hey, Negro! You missed a spot!”
The young man did not turn around. The first girl smiled a bland
smile that all white girls – hell, all white people – have and
walked on. A group of Mexicans stood by and laughed that high pitch
laugh that all of them have.

So now it’s your turn. What do you think the black window washer
did? What would you do in that situation? Do you think he turned and
calmly explained the fallacies of racism and showed the girls the
error of their way? That’s the one thing that makes racism, or any
discrimination, less powerful in my mind. No matter how biased or
bigoted a comment or action may be, the guy can turn around and
explain why racism is wrong and, if worst comes to worst, punch `em
in the face.

Discrimination against those who can defend themselves, obviously,
cannot survive. What would be far worse is if we discriminated
against those who cannot defend themselves. What then, could be
worse than racism?

Look around you and thank God that we don’t live in a world that
discriminates and despises those who cannot defend themselves. Thank
God that every one of us in this room, in this school, hates racism
and sexism and by that logic discrimination in general. Thank God
that every one in this institution is dedicated to the ideal of
mutual respect and love for our fellow human beings. Then pinch
yourself for living in a dream. Then pinch the hypocrites sitting
next to you. Then pinch the hypocrite that is you.

Pinch yourself once for each time you have looked at one of your
fellow human beings with a mental handicap and laughed. Pinch
yourself for each and every time you denounced discrimination only
to turn and hate those around you without the ability to defend
themselves, the only ones around you without the ability to defend
themselves. Pinch yourself for each time you have called someone
else a “retard.”

If you have been wondering about my opening story, I’ll tell you
that it didn’t happen, not as I described it. Can you guess what I
changed? No, it wasn’t the focused hate on one person, and no it
wasn’t the slanted Asian eyes or cookie cutter features white people
have or that shrill Hispanic hyena laugh (yeah, it hurts when people
make assumptions about your person and use them against you doesn’t
it?).

The girl didn’t say “hey Negro.” There was no black person.
It was a mentally handicapped boy washing the windows. It was “Hey
retard.” I removed the word retard. I removed the word that destroys
the dignity of our most innocent. I removed the single most hateful
word in the entire English language.

I don’t understand why we use the word; I don’t think I ever will.
In such an era of political correctness, why is it that retard is
still ok? Why do we allow it? Why don’t we stop using the word?
Maybe students can’t handle stopping – I hope that offends you
students, it was meant to – but I don’t think the adults, here can
either.

Students, look at your teacher, look at every member of this
faculty. I am willing to bet that every one of them would throw a
fit if they heard the word faggot or *** – hell the word Negro -
used in their classroom. But how many of them would raise a finger
against the word retard? How many of them have? Teachers, feel free
to raise your hand or call attention to yourself through some other
means if you have.

That’s what I thought. Clearly, this obviously isn’t a problem
contained within our age group.

So why am I doing this? Why do I risk being misunderstood and
resented by this school’s student body and staff? Because I know how
much you can learn from people, all people, even – no, not even,
especially – the mentally handicapped.

I know this because every morning I wake up and I come downstairs
and I sit across from my sister, quietly eating her Cheerio’s. And
as I sit down she sets her spoon down on the table and she looks at
me, her strawberry blonde hair hanging over her freckled face almost
completely hides the question mark shaped scar above her ear from
her brain surgery two Christmases ago.

She looks at me and she smiles. She has a beautiful smile; it lights
up her face. Her two front teeth are faintly stained from the years
of intense epilepsy medication but I don’t notice that anymore. I
lean over to her and say, “Good morning, Olivia.” She stares at me
for a moment and says quickly, “Good morning, Soeren,” and goes back
to her Cheerio’s.

I sit there for a minute, thinking about what to say. “What are you
going to do at school today, Olivia?” She looks up again. “Gonna see
Mista Bee!” she replies loudly, hugging herself slightly and looking
up. Mr. B. is her gym teacher and perhaps her favorite man outside
of our family on the entire planet and Olivia is thoroughly
convinced that she will be having gym class every day of the week. I
like to view it as wishful thinking.

She finishes her Cheerio’s and grabs her favorite blue backpack and
waits for her bus driver, Miss Debbie, who, like clockwork, arrives
at our house at exactly 7 o’clock each morning. She gives me a quick
hug goodbye and runs excitedly to the bus, ecstatic for another day
of school.

And I watch the bus disappear around the turn and I can’t help but
remember the jokes. The short bus. The “retard rocket.” No matter
what she does, no matter how much she loves those around her, she
will always be the butt of some immature kid’s joke. She will always
be the butt of some mature kid’s joke. She will always be the butt
of some “adult’s” joke.

By no fault of her own, she will spend her entire life being stared
at and judged. Despite the fact that she will never hate, never
judge, never make fun of, never hurt, she will never be accepted.
That’s why I’m doing this. I’m doing this because I don’t think you
understand how much you hurt others when you hate. And maybe you
don’t realize that you hate. But that’s what it is; your pre-emptive
dismissal of them, your dehumanization of them, your mockery of
them, it’s nothing but another form of hate.

It’s more hateful than racism, more hateful than sexism, more
hateful than anything. I’m doing this so that each and every one of
you, student or teacher, thinks before the next time you use the
word “retard,” before the next time you shrug off someone else’s use
of the word “retard”. Think of the people you hurt, both the
mentally handicapped and those who love them.

If you have to, think of my sister. Think about how she can find
more happiness in the blowing of a bubble and watching it float away
than most of us will in our entire lives. Think about how she will
always love everyone unconditionally. Think about how she will never
hate. Then think about which one of you is “retarded.”

Maybe this has become more of an issue today because society is
changing, slowly, to be sure, but changing nonetheless. The mentally
handicapped aren’t being locked in their family’s basement anymore.
The mentally handicapped aren’t rotting like criminals in
institutions. Our fellow human beings are walking among us,
attending school with us, entering the work force with us, asking
for nothing but acceptance, giving nothing but love. As we become
more accepting and less hateful, more and more handicapped
individuals will finally be able to participate in the society that
has shunned them for so long. You will see more of them working in
places you go, at Dominicks, at Jewel, at Wal-Mart. Someday, I hope
more than anything, one of these people that you see will be my
sister.

I want to leave you with one last thought. I didn’t ask to have a
mentally handicapped sister. She didn’t choose to be mentally
handicapped. But I wouldn’t trade it for anything. I have learned
infinitely more from her simple words and love than I have from any
classroom of “higher education.” I only hope that, one day, each of
you will open your hearts enough to experience true unconditional
love, because that is all any of them want to give. I hope that,
someday, someone will love you as much as Olivia loves me. I hope
that, someday, you will love somebody as much as I love her. I love
you, Olivia.

Soeren Palumbo is a senior honors student at Fremd High School in
Wheeling, Illinois, and big brother to Olivia. During Writer’s Week
(in March 2007), he gave the following speech to a gymnasium full of
his high school peers and faculty and received a standing ovation.