Heartwarming Video

I saw this video on someone's blog, and it really warmed my heart. I just love it when people with disabilities just don't make that disability into a major defining trait in their lives. It's kinda an afterthought. They don't view themselves as people with Down syndrome. They view themselves as people who have struggles and trials like the rest of the human species.



But I can't help but feel that people with Down Syndrome have an advantage over people with lesser known genetic/chromosomal differences. When this young woman is out in society, shopping, driving, socializing, people would understand if she has a hard time with something or acts differently. It's kinda like - hey, she has challenges here and there, but that's fine. It doesn't detract from her as a whole.

When people's challenges are obvious, they want others to ignore the differences. But when someone's challenges are hidden, I think it's best to be outspoken about them.

I wonder what will be with Adi. She is undiagnosed, and at almost three years old, her development so far is similar to her peers with Down Syndrome. When she is ready to be part of society as an adult, I wonder if she will be as accepted as this young woman in the video, or if she will be seen as just a misfit.

I mean, when people know that someone has a challenge, they view the person as someone who is overcoming challenges and beating the odds.
But if a person seems ordinary to begin with, but on second glance you notice some things that seem off, people view that negatively. Why is she so slow and clumsy? Why can't she just speak clearly? No one would think that about a person who they clearly see has Down Syndrome.

I like how the mother of the young woman in the video said that she is proud of her daughter for getting a driver's license, but she's proud of all her children. She never treated her daughter differently.

Would I be able to do the same for Adi? I'm reminded of the switch from elementary school to high school. In 8th grade, we were the seniors. On top of the world. The big graduates. A few short months later, we are at the bottom of the totem pole as nerdy freshies.
Somehow, if the disability is obvious, the individual is put at the highest level. The oldest and coolest kid in elementary school. They climbed to the top. But if at first glance the individual looks typical, they will be held at a different standard. Adi may grow up to function at the same level as the young woman in the video. But I am afraid that instead of being a cool kid, she'll be regarded as one of those lowest-rung members of society that have a long way to go to be fully accepted. All because her challenges aren't as easily recognizable on her face like is the case with people with Down syndrome.

What is my point? I guess I'm just explaining to the world, and to myself, why I can't act as if there is no disability (the way the mother in the video raised her daughter.) The video is only cool because we all know she has Down syndrome, but she is living as if she does not. Imagine if we as viewers couldn't tell she has any genetic or chromosomal disorders. We'd all think it's a worthless video. Who cares if a 30 year old can drive? Or go shopping or hold down a job.

I don't know if I am restraining Adi, not letting her get as far by keeping her special needs at the forefront. After all, 9th graders are one level above 8th graders. It's just the way they are perceived that is different.

So is it worth holding Adi back a bit so she is perceived in a better light? I don't know.
I also don't know if I'm making sense... just some thoughts that cropped up watching this great video!

Shana Tova!

Here I am, reporting from the *other side*. Heh heh. I really haven't updated in a long time, have I? It's a new year, a new chance to fall behind on blog posts, sleep and housework.

It's funny how I blame my lack of blogging and sleep on sweeping, laundry, and dishes... but those things remain neglected as well. So where does the time go? Parks, crafts, phone calls to doctors and specialists. I guess.

Adi is getting new braces for her feet. It's almost her birthday, and we have a genetics appointment coming up. She is aging out of Early Intervention and will be going to school soon. We need to have a meeting in order to continue services, and that meeting has to take place in the ten available days before her birthday. Yikes.

Talk about birthdays, I had mine recently. Yay! The boys drew presents for me. Adi's present was bedtime weaning. Notice I said "BEDTIME" weaning, not night weaning. She still nurses when she wakes up at night, but now she falls asleep without nursing. But now she is sick. So she screamed for over an hour at bedtime.

Everyone in the family is sick, actually. The boys missed a day of school. I think Gedalya might be well enough to go tomorrow, but I myself am not well enough to judge his state of health.

A bunch of people I know started cooking for Rosh Hashana a week or so before it began. I thought they were nuts. I was planning to do the cooking Wednesday, erev Rosh Hashana, and some on R"H itself. But those friends of mine really got to me, and I just couldn't help but start cooking Tuesday night. And I didn't even have to cook on Rosh Hashana at all! (Except rubya, black eyes peas, which I totally forgot about.)

Karsi: leek

I left some fried leek to accompany gefilte fish, and the rest I made into a kugel.

It was really yum!

Silka: spinach patties

Some steamed veggies:

I made kreplach (no photo- meat in dough to put in soup) and had so much extra ground beef that I had defrosted. So I had to use it up. Hamburgers. Oh, were they delicious!

Um, a meat kugel? I had extra dough and extra meat. I was desperate! But the kids really liked it.

 There was a lot more... salmon, soup, gefilte fish, FISH HEAD.

We recently found two snakes in our yard, bringing the summer's total to three.

It's officially fall...

Adi just came out of bed, so I leave you with a day in the park...

Seasons...

I'm excited about fall in our new house. With so much greenery, our yard will look gorgeous. I was awed by spring, and now I am excited for fall. Although now we will be responsible for raking leaves from the sidewalk and all over our large yard. And then winter... we won't be able to leave our yard without shoveling. I had a preview of that when we were looking at the house in the winter. The snow blocks the gate.

Today really felt like fall already. This is a see-saw period. There are kids walking around dressed in short sleeves and shorts, winter coats, and everything in between. I am going through all the clothes and turning over the closets little by little. Almost done with Adi's... still need to do the boys'.

Adjusting from the freedom of summer to the rigidity of school was a bit tough.

It didn't help that the first day was cool and rainy and we needed jackets for the first time in a while.

(Zusha's class)

We were planning on taking one last trip on the first day of school (dismissal was at noon), but the weather was dismal. And it rained for the next few days. Not a gentle transition into the new season!

So when the first Friday of school brought sunshine and Gedalya asked me to go to the bay after I picked them up, I decided to go for it.

We couldn't give up our traveling lifestyle so easily. (As a matter of fact, Adi begged me to go on a train today. When I didn't let, she started to go up herself!  Poor deprived kiddo.) So that Friday we got on the little bus and went to the bay.
This was to be our last trip of the season, so we went big. We walked and walked and walked.
We walked from point A to point B on this map. The goal was to get to the Verrazano Bridge, and we did it! Three miles!

What we didn't take into consideration, though, was the heat. It was HOT. The previous few days fooled us into a false sense of fall. All summer long we avoided sunburns, but we got one that day! The irony...

"We made it to the bridge!"

We got home just two hours before Shabbos. And I can tell you, we were cured of the traveling itch! We're just fine not going on two trips a week.

Last week, summer made its final appearance.

The boys went swimming after school. I designated Wednesday as the last swimming day. On Thursday it was still hot, but we were going to the dentist after school, so no swimming. And as if on cue, that evening fall weather came. We took the bus home from the dentist because it was too cold to walk!

I'm still holding on to the shreds of gorgeous weather. The boys don't stop wishing for winter (I don't blame them. The first year they can have hundreds of cubic feet of personal snow!) but I tell them to enjoy what they have while they have it.

As far as I'm concerned, I have two more weeks of summer to catch up on, so it's still here. :)

Week 8 of Summer! (Just a little late.)

4th week of August...

The boys have wanted to go to a dinosaur museum forever. But the American Museum of Natural History is an hour away by train. Not something Adi would put up with. And imagine all the tantrumming opportunities in the museum!
But this Sunday, we left Adi home with Hillel and went on the biggest adventure of the summer.

Adi wasn't with us, but she wasn't forgotten! We got her an Argentinosaurus necklace. We have a joke in our family that Adi is an Argentinosaurus (both start with A.)

 Monday: Library and park.

Tuesday... the weirdest day of my life. We experienced an earthquake. An earthquake! In New York! We were all at home. I felt the house shake, but to be honest, this ancient house shakes all the time. It shakes when the freight train passes by, and it shakes when the upstairs neighbors use their washing machine. But this was different. It wasn't vibrating, it was rocking slowly. The doors of our closets swayed.

I happened to be on the phone with my mother, and she asked me if I just felt an earthquake. Hillel came up from the basement and asked why the house is shaking. I Googled, but nothing came up. Weird. I posted on Facebook, and no one was talking about it there, either. Was I hallucinating? Was my husband, my mother and I having some odd dream?
I refreshed the Google page five minutes later, and the entire first page was filled with news about the earthquake.

I wasn't sure about going out, in case of aftershocks, especially since the cell phone network was down. But we took the chance. :) We went to the park.

 Thursday was a rainy day. We didn't plan on going out, but when the rain stopped in the afternoon, we went out for a walk. Then I asked the boys if they wanted to go to the bay, and guess what the answer was?? We took the regular bus instead of the Jewish van that takes us right there. The city bus takes us about a mile away from the stores, and we get to walk over a bridge over the highway.
And the park that's near there is a great bonus. :)

Hurricane Irene was coming that weekend, and the waters were rougher than usual. Add in the high tide, and we got splashed in the face by the waves!

We stayed till sunset.

And Adi danced for us.

On Friday we did some epic shopping. Hurricane and all that, you know. Besides, we were planning on making emergency kits for a long time, and now was the chance.

We came home and I spent time taking things in from the yard. That's when we discovered a baby snail...

...and another ...and another.  Look how tiny!

Mama and baby. Cute, huh?

On Shabbos we plugged in a radio in the basement and left it on all Shabbos. We covered it with clothes to muffle the sound. There were mandatory evacuations all around us, and it was important to be up to date with any news.

In the end, all we got was a flooded kitchen. But that's a post for another time. :)

Shira

When I was in 11th grade, we got a cockatiel.
Shira lived with us for 11 years.
When I got married, Shira stayed on in my mother's house.

One time when my mother was doing renovations in her apartment, Shira got to stay with us. Zusha was 17 months then, and he was delighted!

When Shira first came to live with us, she was a scared little thing. She didn't like interacting with people much. We had other cockatiels who loved head scritches, but Shira would have none of that. Eventually she warmed up to my mother. I had a hard time believing her when she told me that Shira drops her head for my mother to rub!
She became a little puppy, understanding commands, being able to express her needs, expecting certain routines.

Just look at that beautiful bird!

My mother made different gyms, climbers and toys for Shira. All the bird things in all these photos are made by my mother!

Shira taking a nap next to photos of me and of Zusha.

Airplane bird!

Shira has been through a lot. She's had times when she would lay eggs in hidden places all over the house, and my mother had to find ways to discourage her so she shouldn't waste her body resources. She's been sick, and my mother nursed her back to health each time.

But last night, Shira died. There aren't that many people who would understand the pain of having a pet die. Because most people just have pets for entertainment purposes. Like fish that they win at carnivals. They expect them to die, sooner rather than later. I even saw a sign for a backyard carnival this spring, and they were raffling off a budgie.
But we really treated Shira the way any living thing deserves to be treated. She was allowed to fly around the house, share our food. We researched safety for cockatiels, things they aren't allowed to eat, etc. my mother kept her out of the kitchen when using the microwave. She made sure to be home to turn off the light for Shira at 9:30, her bedtime. She really listened to her needs. When you love and care for any living thing, you establish a relationship. The same can't be said for people who don't feed their pets for over a week because they can't be bothered to research which foods are allowed on Pesach.

We miss our little yellow bird and barely remember a time without her!

Shira eating, climbing and getting her neck nuzzled:

Bath bird!