A Day with Friends...

A couple of posts ago I mentioned a trip to Manhattan to spend the day with friends...

In the beginning, the kids didn't really play together.

Eli and Yosef played with each other...

And my kids played with each other.

But towards the end, everyone was having lots of fun!

We went to get ice cream, and then to our friends' gorgeous private park. Living in a building in Manhattan sure has its perks! We walked to the East River and enjoyed watching the boats. And cranes on the boats!

It was fun! While playing, my kids noticed a train going on a bridge. How cool! Then when they found out that they could WALK over that bridge, their joy knew no bounds!
Even though we were all tired, we walked all 1.5 miles over the Williamsburg Bridge.

We looked down upon the very same benches we sat on not long ago, in the photos above.

Marveled at boats.

Giggled at the silly graffiti.

And we watched the trains running alongside us on the bridge! After we walked over, we had to take one of those same trains back over the bridge into Manhattan so we could get the right train home. My boys had fun repeating that "we went from Brooklyn to Manhattan, and then to Brooklyn, then back to Manhattan and back again to Brooklyn!"

Thanks, Miriam Sarah, Eli and Yosef for a great, fun day!

Happy Everything!

A good Yom Tov, a good moed... a good yohr!
Happy new beginnings, happy sukkos celebrations, and a happy upcoming birthday to our almost three year old girl!

It's been one year since Adi took her first step. Two years since we started therapy. And three years since I got the most wonderful Simchas Torah present... my wonderful Adibaby!

I am surprised it took my boys this long to figure out something is different about their sister. But really, they never realized! They once asked me if they also had teachers come to teach them to walk and talk when they were babies. I told them that no; some kids learn it by themselves, and others need help. They asked me why Adi needs orthotics. I explained that they help her feet stand straight on the ground.

But still they never realized Adi was different.

Today we were preparing for Adi's birthday that's coming up on Friday. Gedalya, who was 3 not that long ago himself, said, "But she will be three, and she still won't know so many words!" Says the kid who started reading when he was half a year older than Adi is now.

Yesterday we went to a Chol Hamoed event by A Parent Speaks. It's an organization that is involved in the special needs community. It was just awesome. All my kids enjoyed. Adi got very into the craft, and danced to the live music. She wanted to get a fishie painted on her face, but backed out as soon as I sat her on the chair, after a 15 minute wait on line. Gah!

But the BEST part was... at the end they gave snack bags with a squeezy artificially colored drink, sour sticks, colored marshmallows and flavored chips. None of the things my kids are able to have! I brought them back, and instead of snickering, or rolling her eyes, or saying something like "come on, let them enjoy," she apologized to me! Apologized! In an environment like this, people know some kids can't have some things, even if they seem benign. 

Oh, and another best part: There were kids that actually shrieked louder than Adi! No one stared when Adi shrieked. Or when she threw herself on the floor and refused to let me pick her up. Everyone was able to be themselves. It was so beautiful and natural. My boys didn't even seem to notice that some of the kids had differences.

Events like these give me hope for the world. Everyone felt at ease. Happy. Gedalya stood on his head for a good percentage of the time. :) And you know what? He wouldn't do it at any other party. But this was a non-judgmental place. 

So talking about Adi's not-so-many words...

...here's just a sampling of her recent words and phrases:

hohie = horsie

toe-lue = turtle

goggie = doggie

guckie = duckie

bowie = birdie

han = hands

(Adi said, "doin han" when we were all making funny shapes with our fingers.)

hoon = phone

nowani = don't want it

awani = I want it

teen = train

weeng = swing

on/off

button

pan = pants

tawid = carriage

wolue = water

backpack

bock = book

cookie

ainga = traingle

(She finds them everywhere, like sails on boats...)

go-lee = girlie

pa-ee = potty

(The girl knows what to do and when, but has no patience to sit on the potty long enough!)

ponny = pony

(as in pony tail for the hair)

ca-yoo = color/draw

And what might be the best quip EVER:

"Oh, no! Aaah-di! Nah-nye!" (Oh, no! Adi! Not nice!) Sad that the most words she ever strung together are scolding words for her trouble-making!

But as long as she continues to make trouble, I'm happy! :D

9th Week of Summer Vacation

Last week of August, first week of September.



On Sunday there was supposed to be a hurricane. But it seems it overlooked New York, because by midday the sun was out and the day was beautiful.
So we went out to assess the damage.
There was a crack in our house before we moved in, but it was cemented. It seems that between the earthquake and the hurricane, it opened up. It's about 5 feet long and an inch or two wide. We're still fighting with the landlord to get it fixed. Meanwhile I get rainwater all over the kitchen each time it rains. :(

Gedalya had a great time collecting acorns, pretty leaves, branches and unusual seed pods that littered the ground after the storm. Here's a cute lineup of acorns.

We was many smallish branches that had fallen off of trees, but this one was big. Of course, the boys had to check it out.

The entire top of a tall tree snapped off, and one car wasn't having a very lucky day.

My mother in law and sister in law came to visit. Since no trains were running, they walked about 2 miles each way to visit us, if not more.

Silly seed pods...

Monday: Zusha made a dinosaur at the library.

We saw a cute little cricket in our yard.

And we cuddled with Mushu.

Tuesday was a super fun day! We went to Manhattan to visit friends.

It was a long, fun day... too long for this post, in fact.
We were all hungry and tired when we came home. We went to a pizza store, where Adi did this:

On Wednesday I got a new camera! I wanted a more professional one... one step closer to being a professional photographer. I had listed my old one on eBay, and it sold! The day I got my new one, we went to the post office to ship the old one out.

On the way we saw more hurricane carnage. Fun type of carnage.

Stopped off at Eichler's to listen to music...

And took a ride.

Tested the new camera on some scenery.

More fun destruction.

"In! Bock!" Adi said. So I put her in the box. :)

Thursday:
I was playing around with the new camera too much... too many photos for this post! 

Friday:
Adi's first braids! It's been just a month since my first attempt, and it's become one pf my favorite hairstyles for her. Two braids, half a braid, pigtails that are braided...
I finally discovered that I need to wet the hair first.

Look out for more braid photos in future posts!

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...