My Shtub

Moved!!

noreply@blogger.com (Sheva) — Fri, 18 Jul 2014 13:16:00 +0000

MyShtub has moved. I will no longer be blogging here at blogspot, and eventually this will be taken down. But no worries everything including all the old articles are over at the new place. Its a much cleaner site with easier navigation. So come on over I've missed you!
http://www.myshtub.org/

Moving

noreply@blogger.com (Sheva) — Fri, 02 May 2014 11:02:00 +0000

To all my wonderful readers,

Myshtub will be temporarily shutting down. I have been a blogspot user for many years, but lately it has not held up to my standards. I am working diligently to move my blog to an independent hosting. It will be easier to use, more interactive, and hopefully without so many quirks. Unfortunately this takes time. Please be patient and know we will be back soon. Have a wonderful Shabbos!

Purim Soup

noreply@blogger.com (Sheva) — Mon, 24 Mar 2014 17:44:00 +0000

Did Purim just fly by and someone forgot to tell me? Is it really just a few short weeks from Pesach? How is this happening? For weeks my house looked like this, as the windstorm of Purim flew in.

Now the table is cleaning and the Pesach scrubbing will begin.
What I dont understand is last year both Purim and Pesach were earlier in the year, but the whirlwind feeling I'm having this year , I did not have last year. Why is that?
Is it becasue I decided to make Rozie's complete costume from scratch this year? Ok I didn't knit the tights I bought those, and the shoes.

She realy wanted to be a Kallah ( bride) this year, along with all the little girls in her class. But she was very specific about her costume, especially the veil. She did not want it touching her eyes. Once I realized I was going with a retro style veil, to accomadite her no eye touching request, the costume took on a new level from there. I think this is my favorite costume yet.

Ironically Dovie wanted to be a CIA agent. Boys costumes are never as fun, for me at least. They always want to be some form of law enforcement. What is with that anyways?

This year for our Shalach Manos I wanted to go with something easy and healthy. Every year I end up baking and gathering tons of junk. I wanted to give an actual meal, so I went with soup and a homemade dinner roll. Little did I know what I was getting myself into.

I was seriously up to my eyes in soup. It was everywhere. For days my house smelled like the strongest soup know to mankind. I was scrubbing soup out of my pores. It was a soup nightmare. I honesty can not look at or even think about soup ever again. Next year I'm buying a case of wine and chocolate bars. I'll wrap them up with ribbon and be done. Yah right.

But its all over now and Pesach is on my mind. I probably will even make soup again. When did life become such a quick ride. I really wish it would slow down.

Running

noreply@blogger.com (Sheva) — Wed, 05 Mar 2014 16:54:00 +0000

Yesterday I was running into my local grocery store with Rozie. I had about 15min to get what I needed and be out the door on time to pick up Dovie from school. I was trying to convince Rozie to sit in the cart (which never happens), because it would help us get through the store quicker. As I was wheeling and dealing with Rozie, I heard a voice. "Can you tell me where I am?" "Please just tell me where you dropped me." "Sir, please!" I looked up and saw a women who was visually impaired standing next to a cab begging the driver for help. The cab driver had simply dropped her off on a curb and drove away without a word. I watched the entire situation out of the corner of my eye, and now this women was aimlessly trying to orient herself with her cane. It was 100% obvious that this women needed help, but I had zero time to do it. I needed chicken for dinner, I had carpool, and I was also currently engaged in a battle of the wits with my favorite toddler teen. I assumed she would be OK because she wouldn't have gone out without help if she couldn't get around properly, right? I also assumed someone else would help her. I wasn't the only person to witness this scene. I finally convinced Rozie into the cart with a promise of a chocolate bar from the heavens, and looked back one more time. She was still trying to orient herself. So on this day where my time was short, and my Rozie was in full diva mode, I realized that this one was on me. I turned my cart around and went up to the lady. "Do you need help, I saw what just happened?" I said. "Oh please, thank you so much I'm not sure where I am." she said. I explained in detail where she was and where exactly the driver dropped her, and we both agreed the driver was so rude. She asked if I could help her in the store, and I did. We got what she needed, and she was an enjoyable person who had some great things to say. I still had to pick up my Dovie, the chicken we can do without. I explained this to this really nice woman, and she was very understanding. I told her I would take her to the checkout and there I would find someone else to help her. Unfortunately I asked person after person, and nobody was willing to help. I was stuck, so I asked her what we should do? She told me if I oriented her she would be fine. So I did and I left her to her own devices with a rock in my stomach.

When I got in my car I realized that this situation hit me harder than I thought. What I witnessed was a woman with different abilities being treated badly. She needed more than the average cab fare, and that was too much for that driver to give. She needed more than the average costumer, and that was too much for anyone to take on. It was too much for the driver to say you are in front of Bank of America facing north, and too much for another person to walk her the 5 min to her next location. It hit me that this could be my Rozie. That one day many years down the road my Rozie may need "too much" as an adult. She may ask for directions to be given in greater detail. She may need help understanding prices in the market, and I will not always be there to help her. That simple fear paralyzes me. The fear that my sweet little girl may need "too much" in the future.
Its a hard drink to swallow, and this day was a hard reality check for me. It was also a reality that before I had my Rozie I may not have even noticed this woman and her dilemma, and truth be told I may not have even cared. I know that is horrible, but how many of you would give up shopping for that nights dinner to help someone else. How many of you would feed your kids PB&J that night because helping someone else was more important than chicken and rice. Before Rozie I don't think I would have. This is the "me" society we live in.

I thank Hashem everyday for giving us this little girl of ours. Not because she is a perfect angel, trust me she is far from. Not because she is "happy all the time" like all people with Down syndrome are suppose to be, again far from. Not because I believe she is so special, and we are special parents to receive her. Simply because she has helped me be a better mother and a better person. Having her has made me step outside my "me" box and move on to greater things, like helping someone else in need.
Besides PB&J for dinner always is eaten with bells on in our house.

Busy Bee

noreply@blogger.com (Sheva) — Tue, 25 Feb 2014 02:01:00 +0000

I've been very busy in these parts, and that is how I like it. Together with a fried we have put together this amazing event, so if you are local you must come....

If not we will wish you were there. What are your Purim plans, anything exciting???

Snow Swing

noreply@blogger.com (Sheva) — Tue, 18 Feb 2014 02:56:00 +0000

We are literally snowed in, with more coming tonight. Its pushing my snow limits which are actually zero to start with. The first snow is always exciting, but we are far from that, and the excitement is long over.

And when the going gets tough just pretend its a warm spring day.

Did we fool you? Did it feel like spring was in the air with the sounds of kids playing on the swing set? Ya we weren't fooled either, but snow swinging is kinda cool.

Stay warm my friends!

Our Inclusion

noreply@blogger.com (Sheva) — Mon, 10 Feb 2014 17:47:00 +0000

Sometimes I stalk Rozie a little bit at school. I know it’s crazy mom behavior, but I can’t help it. I'm not worried; I love her school and teachers. I just want to see “school” Rozie. I think it is almost like I need to see it to believe it.

I need to see her thriving and doing everything the books said she wouldn't do. I also like to stalk my other kids but not quite the same way I bother Rozie. You have to imagine that if your child was born with preconceived notions and lowered expectations about her future, you too would worry about them a little above the norm. I personally ease the worry and fear, with some good old fashion helicopter mom style stalking. Don't judge.

Today I slipped into her class and she was in circle time with her peers. One little girl was in the middle of the circle having a mini moment. She had a sad face and her head tipped against her shoulder, we also know this look and stance, but this time it wasn't Rozie. The little girl finally reveled that her upset was because SHE wanted to sit next to Rozie. I could have walked out right that minute and had been good for the rest of the day, the week even.

This is what inclusion is all about. It’s not about teaching others to be more understanding (mind you that is an amazing side benefit). It is also not all about what Rozie could learn from being around her “typically” developing peers. There is that added bonus and she does learn from her peers, but again that is not what its all about. For us inclusion is about a little girl wanting to sit next to her friend Rozie. She doesn't see Rozie as someone who is different. She doesn’t see Down syndrome. What she sees is her friend that she wants to sit next to.
In class the girls are treated the same. Rozie’s teachers have the same expectations for Rozie as her peers, and she is given the same respect. When accommodations are needed, they do it in a way that would never make Rozie feel like an outcast in front of her peers. Her friends see this and think of Rozie as their friend, the one they want play dates with, the one they want to sit next to. This is what I consider successful inclusion. It is successful because we work as a team. The teachers, the principal, and myself work to find ways to make Rozie succeed in this environment. Today I got to witness all our hard work pay off. All the hard work came together with one little girl’s simple word " I want to sit next to Rozie."

I worry about Rozie's future. Will this continue? What about in elementary school when the academic expectations are higher? But I can't spend my days dwelling on her future and what it will and will not be. All I can do now is slip in her class everyone once in awhile. I can watch her draw triangles, or point out the letter her name starts with. I can see her smiling and playing with her friends and I can go home knowing that my daughter has simply been included.

May we all merit the coming of Moshiach speedily in our days. Where words like inclusion and acceptance will no longer need to be used. We will see the light of every neshama and value everyone for their true being.

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This post was written in honor of Yachad's North American Jewish Inclusion Month. More information here

TV Time

noreply@blogger.com (Sheva) — Fri, 07 Feb 2014 19:32:00 +0000

We don't have an actual TV in our home, but in this day and age if you have a phone you have a TV. I allow my kids small amounts of video time. Usually kosher videos like Mitzvah Blvd, Uncle Moshy, and some other parve videos. I try to save the screen time for when I'm desperate. Shabbos cooking, sick days, and snow days. But even with limited viewing my kids have become obsessed. Like seriously obsessed. I don't know if it is because of all the snow days we have had, but my limited screen time has recently become daily screen time. It was getting to the point that I couldn't look up a recipe online without their little ears perking up at the sound of the keyboard clicks. Next thing I know they are dropping all imaginative play and begging for some zone out time.

Today I dropped the bomb and banned videos for 2 weeks. I was frustrated and saddened that we became "that family". I'll let you know how it goes. How do you deal with obsessive screen time in the age of screens.

No Lie!!!

noreply@blogger.com (Sheva) — Mon, 03 Feb 2014 03:24:00 +0000

I have missed you guys, I truly have. I'm not going to lie this has been a rough winter. I bet you are all nodding your head right now in agreement. It seriously has been a crazy winter.

We have been passing colds and strep around while we are snowed in, not fun I say not fun.

But no fears Rozie has gone into full podding overdrive. She has really taken her podding to new a level, and I'm not sure how I feel about it.

Even with stuffy noses and sore throats they still insist on going outside.

I'm slowly working on getting this blog running properly. Some of the links aren't working and I'm slowly but surely working on it. I hope to have it all fixed up and running this week. But they are calling for a 1/2 foot or more of snow tonight, so who knows. I hope all of you are staying warm and safe this winter, its been a doozy!

Random popcorn

noreply@blogger.com (Sheva) — Tue, 07 Jan 2014 22:08:00 +0000

Every year I get inspired to do one of those 365 days of pics projects, but it never happens. It's a huge commitment that I just can't make especially when all the Yom Tovs role in. I decided instead I'm going to do random pics of the week. A little something from our lives. Sometimes inspiring, often not, and probably a lot of random. Here we go.......

Every day after school I make the kids homemade stove top popcorn. I've been doing this forever, but what is so random about it is I personally dislike popcorn. So I don't know what inspired me to create this tradition, but needless to say it has stuck and the kids love it. And to add to the randomness Dovie has been wearing this hat and vest lately after school, and I have no idea why.

Gallery wall AHHHHHHHH

noreply@blogger.com (Sheva) — Mon, 06 Jan 2014 17:13:00 +0000

We needed a new sofa
--> desperately; ours was over 10 years old and was done. I searched for months for a new sofa set, and nothing felt or looked right. I didn't have tons of money to spend either so my search was limited on many levels. I finally found the perfect set, and we went to the store to check it out. I loved it in-store, it was kind of velvety and a light gray. I thought the gray would be a perfect neutral background that I could pop with different color pillows and throws. Needless to say when I got it home it no longer looked great. The color was more of a slate blue, and I don't like slate blue. The wall color in my living room plus the low light issues we have took my beautiful slate gray and threw it out the door. We thought about re-painting, but we are hoping to move to a newer home in the near future and don't want to invest anymore time and energy into this home. I decided to keep the sofas and work with them until we do move. I called my mother who has much better eyes for decorating than me, and my grandmother who use to be a professional interior decorator. I begged for help so we turned on Skype and went to work. My mother suggested I pick a color scheme and stick to it. Usually I mix and match all the colors and hope it works. We decided on a gray rug ( to bring out the gray of the sofas), golden yellow punch color, and black and white high lights. The room is slowly coming together, slowly, and I'm feeling a bit better. One of my favorite parts is the gallery collage wall.

It was my moms suggestion to use only black and white images in black frames. After many many nights of hanging, taking down, re-hanging, spray painting, searching and stressing the wall finally came together.

There are many suggestions online how to easily do these type gallery walls, like planning the wall first with paper cutouts, but that just didn't work for me. In the end here is what I suggest:
The Not So Easy But Realistic Gallery Wall:
1. Stick with a color pallet it will look nicer and not like a teen's bedroom wall. I had to spray paint the Gs so they stuck with the color theme.
2. Just start hanging. This worked better for me than planning it all out. I hung the biggest item first and went from there. Adding and moving things around.
3. Find things that have meaning to you. There is no point in taking all this time and energy to make a collage of meaningless stuff. You will look at it everyday it should feel good to you.
4. Use a bit of sticky on the back of each picture. I used teacher poster putty and added a little wad of it one the bottom of each item once it was hung ( I used a level to make sure it was perfect). This keeps it from moving every time you dust or bump the wall.

Rozie's first ballet shoes. A memory I will never forget.

This is a picture of my mother in law as a child and who Rozie is name for.

Stay tuned next post will teach how I made the personalized "Givre" plate!

Blog Look

noreply@blogger.com (Sheva) — Tue, 31 Dec 2013 02:58:00 +0000

I'm sure you guys have noticed that I am working hard on a new blog look. Trying to decide colors and feel. I love the flowers and warm spring feel. You guys know I need that. So please be patient while I get this just the way I want it. Also I'm still looking for a few more vendors for my big re-launch giveaway party. So if you would like to get your product out there please contact me myshtub@gmail.com

But Did You Say Thank You?

noreply@blogger.com (Sheva) — Sun, 15 Dec 2013 19:39:00 +0000

Every year at my kids school they do a Chanukah gift collection. The school asks all parents to give a certain amount of money per child. They pool the money to buy the teachers a nice gift, usually a gift card. This is a very nice thing and it relives the stress of purchasing a gift for each teacher, especially if you have a few kids in a few different schools. With just my three kids they have close to 11 teachers. I couldn't image what that would be for a family of 10. I also know it can be hard financially to give to these gift pools, and many families just can't afford it. Times are difficult especially when you are paying tuition for many kids. Teachers understand this. I underatand this but my quesion to all of you is .....
Did you say thank you?

Saying thank you to your child's teacher or teachers is a priceless gift, and often can cost as much as a pen and paper. One of the nicest gifts I ever received as a teacher was a long list of thank yous. It listed all the thing I had done for their child. It was so touching that these parents remembered all the things I did including stuff from the first days of school. I framed that letter and kept it in my classroom.
We work so hard as parents to get our kids to school everyday. Pack a healthy lunch, and daven they will eat it. We hope they like school, we worry all day about that actually. We complain when things don't feel right. We send midnight emails full of worry, and arrive in the morning hoping to catch a minute of private time with the teacher. We ask, we expect, and we most often forget to say thank you.
Saying thank you is easy and I want to offer some simple ideas........
1. Buy a pack of cute thank you cards and write a nice note at least once a month.
2. Save small $5 gift cards and give them with a thank you throughout the year.
3. I had a parent who is actually my Rozie's teacher this year bring me lunch. Sometimes it was a yummy salad, other days fresh baked cookies. It was always a little something that said I notice what you are doing.
4. Send the teacher a mitzvah note when you send one for your child.
5. Buy new toys when they are on sale to donate to the class as a thank you.
6. MOST IMPORTANT: If you give to the gift pool also make sure to send a card or a small gift separately.

This year I sent these little gifts to all the teachers. I also donated to the gift pool, but these were a separate thank you just from us. I got the idea from the amazing Blog Chana's Art Room. The label said "Thank you for helping my Rozie /Dovie shine bright." I attached chocolate covered almonds in little bags, and tied it up with twine. I did the labels on my computer and printed them at home. It was a simple inexpensive, yet nice way to say thanks.
One of the teachers actually told me that I was the only parent to say an actual thank you. That is sad but easily fixed. I hope each and everyone of you will take on saying Thank You to the person who spends their entire day with your little ones.
Thank You Morahs, Rebbis and Therapist. My kinder shine brighter because of you!
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I'm currently working on a small redesign of the blog. Nothing huge just an updated look. I want to throw a big giveaway party you celebrate my return and redesign . If you would like to have your product in the giveaway please email me myshtub@gmail.com It will be a lot of fun and a lot of exposure!

Punch swing yell

noreply@blogger.com (Sheva) — Fri, 13 Dec 2013 13:31:00 +0000

Sometimes in life it can feel like everyone and everything is swinging punches at you from every corner. But if you are a warrior you come back with a bigger fist and a faster swing. You take one down and another. You push and shove your way though. Sort of like those fighting video games. You take the first bad guy down with ease, the next level gets harder, and it keeps going like this until you get to like level 100 and there and bad guys everywhere. You are twisting and doing fly jumps, but nothing is working. The more you fight the more they come at you. You pull out your best weapons, but these also do nothing and before you know it it says Game over. And there you are in your living room, heart going a million miles per hour, sweat on your forehead, and you haven't even left the couch. Obviously I'm going to connect this long winded video game analogy with how I have been feeling lately. Its funny I chose a video game especially because the only game I ever really got into was Tetrus , but that is what came out.

When I became ill a few years ago I honestly thought that when I finaly beat the ugly cancer that our life would resume to somewhat normal. Little did I know how much permanent damage this horrible disease would take on my body, even when it no longer lived inside of me. I also didnt realize when I signed the chemotherpay waiver that it would save my life and destroy it all in the same breath.
I have been working very hard to restore what these two things have done to my physical health. Eating well, exercising regularly, and having monthly IVIG treatments. But even with all this my body still gets sick and overcome with infections. For the most part my life revolves around whether or not I have an infection. I have lost friends over it, and most people stopped inviting me to events. I even missed my Dovie's birthday party this year, and I worked so hard on it.

Recently I received some pretty upsetting news about my future health. Nothing life threatening, jut mostly sad. I felt like I reached the last level of my game and I just couldn't win. I felt burnt out and done with it all. I sut down my Facebook account and stepped away from this blog. I needed time and peace. I needed to process all that has been dished out to me and how I'm going to live with all the post traumatic stress of it. How am I going to be the mother I want to be when most of my days are spent managing pain and antibiotics? This has been my newest and hardest struggle. When I don't feel well I just can't take care of my kids properly. I become one of those mothers you see in the market with bags under her eyes screaming at her kids. Pain transforms me and I become this alter ego that yells all day long. I yell at the nurses, the doctors, my husband, and my kids. I just can't manage pain, and as it has become much more consistent in my life the less tolerance I have for it.

We decided an Arizona trip would do my health some good. It was a wonderful 70 degrees and I could feel my chronic cough, that I have had for almost 2 years, slowly dry up.

Things were feeling really good but sure enough a slow infection took over my body and by the last days I ended up in urgent care. The wonders of not having a immune system still amaze me.

I am back home and recuperated but feeling awful mentally and burned out physically. I decided that I need to find a new way to deal with my infections and a way to keep my cool when I don't feel well. I recently read a blog post about not yelling at your kids and it really inspired me. I also noticed my friends on FB taking this challenge on. Truth be told is when I feel well I don't yell, but when I'm sick I yell. Its like I go primal or something. So my challenge is different than others, my challenge is to see past discomfort and find patience even when my body has given out.

In honor of feeling better, for my family, and for a complete refuah I am taking on not yelling at my kids when I don't feel well ....... Not yelling even when I feel like yelling at everyone who dares to cross my path. Not yelling even when I feel so sick that getting out of bed is a struggle, but I still have to. Not yelling when everyone is playing and my head feels like it might explode. Not yelling when my kids tell me the same sweet story for the 5th time that hour. Not yelling when the mittens are lost and I have a blinding ear infection. Not yelling when they are yelling at me. Just not yelling period, no more excuses.

Break

noreply@blogger.com (Sheva) — Thu, 21 Nov 2013 18:22:00 +0000

To all my wonderful readers..... I'm taking a personal blog break. My life has recently been harder than usual to manage and I need to concentrate on what is important. I'm taking some time to evaluate and find a better path. My family will be taking a munch needed west coast vacation. I hope to be back after Chanukah. May the lights of Chanukah illuminate in all of us and help guide each and everyone of us on our own personal paths in life.

Blood cold

noreply@blogger.com (Sheva) — Thu, 14 Nov 2013 03:02:00 +0000

The weather has made a dramatic turn. It was shocking how we went from mild and enjoyable to blistering cold in one day. I feel like nobody has what they need and I'm frantically shopping for hats, gloves, and coats. Everyone outgrew everything this year and I'm overwhelmed with the winter accessories.

I have fuzz in my mouth from too many scarfs, and my sheitel has a permanent knot in the back from its battle with my wool coat. I've been on the east coast for 10 years now. Wow I cant believe it 10 years away from the desert, and i still haven't adjusted.

I'm patiently waiting for my blood to say its ready now, that it can handle the cold this year and promises not chill me to the bone. It will be satisfied with my coat choices, even that beast of a wool coat that is taking my wig down, and I will feel a inner warmth, but I'm still waiting. For now I am carrying this little min heater around the house with me and plugging it in to wherever I settle for that moment. Its like someone is breathing hot air on me, but its better than the chill.

It is Novemeber 13th and winter is here.
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I just wanted to let you guys know that I do have an update on the Old Navy post. It will go up hopefully this week.

Sunshine snow

noreply@blogger.com (Sheva) — Fri, 08 Nov 2013 20:58:00 +0000

The weather is predicting snow this week...... need I say more. I decided I will fight it with yellow sprinkle lemon cupcakes. They might be from the box but I'll take my sunshine anyway I can get it. Good Shabbos everyone!

And the winnners are.......

noreply@blogger.com (Sheva) — Thu, 07 Nov 2013 04:15:00 +0000

I know I desperately owe you guys a blog post, and I actually have some great stuff to share with you.

I was out of town on an amazing NY getaway and chose not to inform the world that we weren't home. I know some of you were worried, but please no fear it was just a vacation. For now I want to make sure I publish the winners to the Wonders Of Hashem DVD giveaway.
Mazel Tov:
Hinda Harrison
and
Chaia Kessler

Wonders of Hashem Giveaway!!!!

noreply@blogger.com (Sheva) — Tue, 29 Oct 2013 02:10:00 +0000

I am really excited to be writing today about a great new video. We are big fans of Mitzvah Boulevard around here. We got the first DVD when Dovie was about 3.5 and he quickly memorized the entire video. No joke. The entire word for word video. Now, it is a favorite of Rozie's and even though Dovie is outgrowing the videos, he still has them memorized, and to his sitters' delight, he will sing her all the songs. When we heard they were coming out with a new video called The Wonders of Hashem, my kids were excited, big time!

( please ignore Rozie's red face the cold weather creeped up on us )

This video did not disappoint! It's all about animals that you would see on a safari. My kids love animals and there is actual video of animals in the wild, not just cartoon. It was very educational for them, especially the parts where it explains about the animal in the Torah or Gemara. The video kept their interest the entire time, and they ask to watch it over, and over again. Check out this clip about the video.......

I'm excited to announce that on MyShtub, we are giving away The Wonders of Hashem video to TWO lucky MyShtub readers!! All you have to do is enter below.

My test?

noreply@blogger.com (Sheva) — Mon, 21 Oct 2013 16:08:00 +0000

In Hebrew the word Nisayon translates to "test", but it is often used to describe a challenge and or a struggle in someone's life. Having a child with special needs is often referred to as a nisayon. My child with Down syndrome is my nisayon, my child with ADHD is my nisayon, my child with autism is my nisayon. I could go on here but you get the idea. The idea of naming it is giving it power in itself, and referring to a child with a diagnosis as a nisayon empowers many into acceptance. It is easier to look at this as a challenge/test as something to conquer, and a personal one that is given to you straight from the hand of Hashem. But what about the kids?

I decided a few years ago that I would not refer to my Rozie as my nisayon. Parenting is hard period, and some children are harder. I see this on a weekly basis, actually a daily basis. Everyday someone in my house challenges me as a mother. It has nothing to do with who has a diagnosis, it is just about being a kid and finding your way. My Rozie is also a kid trying to find her way, and yes some days its hard to raise her, and some days its not. I refuse to refer to her as my nisayon, I just cant do that to her. Could you imagine being raised knowing you are the challenge, the test. Can you imagine the message that sends to your child on a daily basis. This is why we don't refer to all children as nisayons, even though parenting really is a test. We say they are our blessings Gd forbid we called them anything else. But for some reason, Down syndrome especially, is fair game for name calling.

Lets all of us take this on. Lets stop thinking of our children with different needs as our test from Hashem, but instead of our blessings. Lets stop saying "I have healthy kids thank G-d , and one with Down syndrome." Lets stop singling out who is the greatest test in our home, and start appreciating what all of them bring to the table everyday.
The best way to bring up healthy well adjusted kids it to not only tell them but genuinely believe that each and every one of them are equal blessings no matter what their challenges may be.
When the days of Moshiach are here, the children will hear the Shofar first, and not just the easy children, but all the children, no matter their diagnosis.

I'm coming my friend.....

noreply@blogger.com (Sheva) — Fri, 18 Oct 2013 02:04:00 +0000

Today I went to my local Old Navy and started to cry. I tried to hide my tears, but in the end I had to give up and put my items down and leave. I went to my car and cried some more. My emotions were so all over the place, from sadness, to anger, to frustration. To make the situation worse, I allowed it to build up over the past few years so inevitably this day was coming like a shaken bottle of soda. When my husband came home I told him what happened and the tears began to sting again. I knew I shouldn't have let this go for so long, but I have year after year. So here is my story...
I like to shop at an Old Navy that is a little far from me but near my favorite market. I usually make a few hours of my grocery shopping, couponing, and Old Navy deal searching. I have made some awesome scores at that store like two dollar PJ's and ninety nine cent mittens.

Anyway, I noticed that this certain Old Navy also employes people who are differently abled. The first time I saw this I was beyond excited. Seriously, ninety nine cent mittens and awesome employees! My heart felt good and I was happy to see that Old Navy was so progressive. I walked by a young man with Down syndrome who was straightening a rack, as soon as he saw Rozie, who was a baby then, he quickly greeted her. "Hi sweet baby, aren't you so cute." I was about to thank him when he was quickly ushered away from me. I heard his manger warn him, "John ( not his real name), our job is to straighten the racks." I thought this was weird so I decided to ask John a question about an item, and again before he could answer me he was scolded. This is when I realized what was going on. John was not an Old Navy employee he was part of an organization that obviously had some sort of agreement with Old Navy to allow such individuals to fold clothes and straighten racks. Ok, I get that and honestly I am very much in support of such programs. There is nothing more empowering than the ability to feel independent and support yourself. I also thought it was awesome that Old Navy, my favorite bargain spot, was part of this idea. Little did I know how wrong I was.

Over the last few years I have seen this organization at the store many times and in full disclosure I am obsessed. Something does not sit right with me from the first time I spoke to John, and I am determined to find out what it is that is fueling my obsession. I walk around the store pretending to shop. I follow these certain individuals and the person in charge of them, and I listen. I listen, and I listen, and today I was so done listening and I began to cry. What I have realized with all my listening is these young men and women are treated like crap, and humiliated over and over again. I wish there was a nicer way to put it, but there isn't. They are spoken to and treated like individuals that do not have value, who do not have feeling, who do not have opinions. Honestly, I don't think this organization actually cares if they do.
Today I went back to this store and I was determined to get a name, and I was ready to take this situation on, but again I was paralyzed and I couldn't do it. For some reason this situation deflates me. I watched John again today. He was straightening the racks and looked pretty darn bored. I bet he was. I used to be a rack straightener myself in the many years I gave to retail work. It's not fun and pretty darn tedious . But John was determined and when a customer walked by he greeted them. "Hi how are you?" and John was scolded. A customer walked by holding a baby and John left his post and said " Hi your baby is so cute!" The customer thanked him with a smile, and John was again scolded. John went back to his racks and began to dance to the music, he was scolded, he tried to wave at customers discreetly, and you guessed it he was scolded. Here is where I lost it. John noticed that a baby dropped his sippy cup. He picked it up and began to walk to the fitting rooms where the mother and child were. His superior saw this and lost it with him. She reminded him that he was not to touch A THING that did not belong to him! At this point an actual Old Navy employee stepped in and tried to tell his supervisor that she told John to take it to the fitting rooms. His supervisor was not hearing it and grabbed the cup out of his hand. She walked to the fitting rooms herself (I followed her) she handed it to the mother and in a sing song voice said I found this your baby must of dropped it. She then went back to John and informed him that she had a better task for him and he needed to stand by her and fold the denim wall. I started to cry. I dropped my merchandise and ran out.

Right now I'm beating myself up, why didn't I stand up for John. Why didn't I give that woman a piece of my mind. Why didn't I tell her that John was obviously not a folder/ rack straighter. Let him greet all the customers who come in, compliment their babies, tell us where the good sales are. Why didn't I tell her that John matters that he has feelings and opinions. Why didn't I say he is a human being that deserves to be valued. Why didn't I tell her that cognitive ability is not what makes someone a good person. Why didn't I tell her that if she ever treated my child like she treated John that I would sing song her ass out of there. Instead I cried.
This is a hard dish to swallow. On one hand, we have made great progress in the special needs community, but on the other hand we have gotten nowhere. Giving individuals jobs and work skills is incredibly valuable, treating them like garbage in the process is dehumanizing.
Luckily I have more shopping to do next week and I feel a little more armed. Next week I'm going to find out who this organization is and I'm going to change it. I don't know how, but I will. Next week I'm going to stand up for John. I will be his voice when he can't find his. I will show him that someone values him. Next week I will not cry, OK maybe I will.
Next week is going to be John's week, because I'm coming friend.

* I want to make an edit to this post to clarify....
I want everyone here to know that I do not blame Old Navy for this situation, they really are just the victims in an attempt to do the right thing. I actually am willing to bet the organization is a good one, my issue is with this specific group and their supervisor. I also want to make clear that I am not basing this on an one time experience, but of a few years of obsessive observation. I had hoped that over the years the organization would prove me wrong, and what I had witnessed was just a bad day or an isolated incidence. Instead I can give countless examples, and not just John. I have a bucket full of negative after negative interaction.

Lastly I also want to clarify that there is no shame in rack straightening and folding. I did that job for years, but that job is not for everybody and obviously not for John. There is a young woman there who is a phenomenal organizer and has unbelievable attention to detail. I actually complimented her on her wall and took a picture. She was non-verbal, but was still scolded and ushered away from me.

** This is the last edit I hope to make to this post. As this blog post has rapidly ran its way around the internet I want to make it very clear that Old Navy is not the problem in this situation. They have actually done the right thing by connecting with a work program to employee people with different abilities. The problem lies in this situation alone and it may not even be an representation of the organization and or work program. I see it as an individual problem of the supervisor/ work coach ( not an Old Navy employee) and how she personally treats her team. At this time I do know the name of the organization that sends out these teams and I have made contact with them. I am not publicly naming them for many reasons.

DIY Pocket sized story board

noreply@blogger.com (Sheva) — Tue, 08 Oct 2013 15:29:00 +0000

One of the areas Rozie struggles in is transitions. I'm pretty sure she is the only four year old that struggles with this ( insert sarcasm here ). Transitions are hard for kids in general at this age. They thrive off consistency and yes some do better than others when that consistency is rocked, but many kids at this age really struggle with it.

Rozie's consistency struggle is not with her actual school day but on the two days a week I pick her up early for therapy.

So here is how it has been going. On therapy days I verbally remind her that she will be picked up early and her teacher also verbally reminds her throughout the day. This has not been working. When I come for pick up it's usually a big melt down, and in one therapy session she was so mad she only spoke to her therapist in Yiddish ( no her therapist does not speak Yiddish) . I needed to come up with a visual cue to help my little transition phobic maidel out.

My I introduce the pocket/purse sized story board.

Whay you will need:

A laminator or packing tape

A key ring

Pictures of your child

I took pictures of Rozie with my phone participating in her therapy sessions.

I also photographed the reward for participating nicely. For example: One Monday you will got to Cheder, Mommy will pick you up early and we will go to speech. If you participate nicely you can get a pencil from the machine ( they have this fun pencil vending machine at the public school she goes to speech for).

I photographed each of these steps wrote the activity name on top in bold letters, because Rozie is learning to recognize words, and laminated ( you can use packing tape also) them in a 3"x3" size.

I punched holes in the corner and attached the cards with a key ring.

Now I just throw my little visual reminder in my purse and we are now tantrum fee! I also made one for her teachers to remind her throughout the day.

This concept of using visual ques is not just for kids with special needs. If you have a child that cries every morning for drop off. Kids who cry at bedtime, etc etc. This will help tremendously. Giving a schedule that is consistent and easy to follow in a visual format will bring a newfound shalom in your little shtub. Let me know if it works for you.
* Edit* I wanted to explain a little better the process of using visual cues to help a child transition. One of the greatest tools you can offer a child who struggles with transitions is the feeling of empowerment, and that is done by preparing them over and over again. For example on Monday the day Rozie goes to speech I will start her morning by flipping through her mini book: Today is Monday Rozie, first you will go to Cheder ( show picture). I will be picking you up early for speech ( show picture), and if you listen and participate nicely you will get an pencil from the machine ( show picture). I will have this same conversation again at drop off, and her teacher will also have a reminder conversation with the same pocket storyboard. This way Rozie is now armed and prepared for her schedule change. When I walk into class she knows exactly why, and knows she will get her awesome pencil if she comes with me nicely. What the visual cue is doing is making the idea of her day more concrete, because like I said above we tried giving her verbal reminders , but it was not working. Some children at this age need a visual concrete symbol to understand. I hope that helps.

May you go from .......

noreply@blogger.com (Sheva) — Sun, 06 Oct 2013 20:09:00 +0000

When a Jewish baby is born the blessing "May Hashem grant them much nachas and see her grow to Torah, Chupa, and Ma'asim Tovim" (to learn Torah, marry, and do good deeds) is usually given upon birth, the naming (for girls) or at the Bris (for boys), in announcements, and often in greeting.

*Rozie was never given this blessing.

When Rozie was a brand new tiny little bundle of red blotchy and peely newborn skin, my oldest son asked me "Will she ever get married?" The question felt so strange to me, my mind was on newborn acne and getting her out of the NICU, not wedding gowns and finding her perfect shidduch. But I realized the question wasn't exactly literal, he really just wanted to know if his little sister was going to have a life, and a happy one at that.

In the Jewish community, life and the happiness of it is centered around marriage and having children. According to Chassidus, the Jewish soul is only half a soul until it becomes one with its shidduch (match) under the Chuppah (marriage canopy). Together the married couple becomes a complete soul. This concept is even stranger to me than my newborn getting married. The idea of walking around for twenty something years as half a soul gives me such a weird, creeped out feeling, and what about my divorced friends? How does that work? But that is another conversation for another time.
Anyways back to Rozie and her tiny and kind of funny looking newborn self. Will my girl get married? The simple answer to that is I don't know. I also don't know if my boys will marry. We all daven that our children grow up to be complete souls and live the life that Hashem has set out for them. And truth be told its not even Ok to mention the idea of a typically developing child not marrying or having their own children, G-d forbid and C'has V'shalom. We just don't say these things about kids with the "correct" amount of chromosomes, but like many other things, Down syndrome is fair game.
Well I'm here to correct some common misconceptions:
1. Adults with Down syndrome feel love and desire to be loved, just like anyone else. They want companionship and a partner to live life with. Some adults with Down syndrome are not on a cognitive level to understand marriage, but they still desire friends and love.
2. Adults with Down syndrome can live independently. I once saw a news interview with a married couple living together with Down syndrome. They both worked during the day and in the evening they shared household chores and often went to the gym together. After dinner they both liked to relax doing their favorite things, and for the wife that was coloring in her coloring books. This article created a bunch of controversy because of that small detail. The Ds community found it insulting and the rest of society saw it as a big fat "I told you so!" I thought it was pretty darn awesome, I also enjoy coloring and crafts, but I guess that is OK for me but not her.
3. The future for adults with Down syndrome is making unbelievable changes. Life for an adult with Down syndrome is much different than a short 15 years ago. Life expectancy along with society acceptance is changing dramatically.

So I would like to take this moment to give my daughter a huge blessing she never received: May you grow up to learn Torah the very best way you can. I want you to love the idea of living a Torah life and I want you to love being a Jew every single day. May you take that love with you to your Chuppah. May you find your perfect match that shakes up your insides in the funny awesome way. When you walk under that Chuppah you will feel something great because your sweet little neshama is about to become one. May your comfort your husband with the same comfort you have given our family, our special little Nechama Roza. But also continue to be the same strong willed little power house that you already are in 4 short years. Tell him what you like and don't let him or anyone else stop you from coloring in your books if that is what you darn well feel like doing. And most of all my sweet little special powerhouse I give you a blessing that you will continue to be an amazing little person. The same little girl that makes sure everyone has a flag on Simchas Torah, and the same little girl that stands up for her big brother when he sometimes feels scared. The same little girl that cares about others in a deep way that no four year old should understand yet, but you do. The little girl that has been the greatest joy to our family, the little girl that we your parents wouldn't change a thing about, the little girl that is going to grow up be something great with or witout a husband, and trust me on that I can feel it in my bones. And if others in this world forget that about you because they cant see past your diagnosis than trust me they are so not worth it. Like not even worth your time girlfriend, again trust me on that one.

We love you our little Rozie from the moon and back and a million billion times over and over!
* My husband would like me to clarify that Rozie was given this blessing when she was named, out of obligation, we never once heard those words again.

Here I am....

noreply@blogger.com (Sheva) — Thu, 03 Oct 2013 01:35:00 +0000

One Shabbos I walked upstairs to my room to find Rozie hiding under my covers giggling. I pretended not to notice and walked around the room saying, "Rozie, Where are you? Where could my sweet Rozie be?" She responded, "I'm here mommy!!" I laughed, and explained to her how the game worked. "You hide and I'll look for you," I told her, "and you stay very quiet till I find you." I know she had seen her brother play this game and I assumed she wasn't quite getting it. She said OK and pulled the covers over her head. "Rozie, Where are you? Where oh where could my Rozie be?", "I'm right here mommy!" I laughed and started to explain the game again, sometimes Rozie needs a few tries to get it right. Then I stopped. What was I doing? This wasn't my game with my rules, it was her game, her fun. If she wanted to yell, "I'm right here!!" every time,what rule was she breaking? She covered up and I started again. "Rozie, Where are you?" and she responded, "I'm here!!" and I threw the covers off her and said, "of course you are." I quickly hid under the covers with her and called my husband up. He immediately saw the lump on the bed began to laugh and said, "I wonder where everyone is?" So Rozie and I yelled back from under our covers, "we are right here!" Breaking all the "where are you?" game rules.

This is it. This is raising a child with special needs. It's breaking out of your comfort zone and learning to accept that there are more than one way to do things. I have been often asked to describe what Rozie's delays are? The best way I have been able to explain it is, "she will do everything other kids do, she just has to be taught how to do it." Recently I've stopped saying that. Rozie will sometimes do what other kids do and sometimes she won't. Sometimes she will act in a socially acceptable way, and sometimes she will melt down on the floor at least 20 times in that day. I have made the choice to stop trying to mold her into what society wants and start accepting Rozie's differences.

If she wants to say good Shabbos every day of the week, instead of good morning, then more power to her. If she wants to talk to the grumpy guy at the deli and not the sweet man stocking the shelves, than she probably has a good reason. She is a little girl who has her own ideas and thoughts, and like my other children I try to respect her ways. I also try to help guide her, but not force her to shape into a socially acceptable being. "Rozie you may run naked through the house, but not outside, I'm sorry that is just the way it is."

In our society we are slowly starting to realize that people with different abilities actually are contributing members of society. They have opinions and views of this world. They may be different and they may make us feel uncomfortable at times, but they are valid and should be accepted as that. Its time that we start seeing that this is what true acceptance is. Valuing someone for their abilities and differences, and stepping back and realizing it OK to say "I'm right here" too.

We made it!

noreply@blogger.com (Sheva) — Tue, 01 Oct 2013 02:57:00 +0000

We survived one of the most intense holiday season I have felt in awhile. Rosh Hashanh to Yom Kippur to Sukkos to Simchas Torah, all in one breath.

It was beautiful and exhausting, and now that it is over I'm kind of dazed and confused.

My kids are all back and school and my life is trying to resume routine again.

October is now here and that means Down syndrome awareness month. I'm not a big awareness ribbon type, but I do try to honor this month every year with a little something.

This year I hope to take things a little further and give you guys a taste of what raising child with Down syndrome is really like. The good, bad, and the beautiful.

There are a few controversial subjects I want to tap into, and some not so controversial. I hope to share some videos and insight in our daily life. I know some of you may get sick of my soap box, but I promise I will step down when the month is over. I would love to hear what you would like to know more about, and what specific subjects you would like me to touch on this month........