A CHILD WITH DOWN'S SYNDROME THROUGH THE EYES OF HIS MOTHER

My daughter had a very interesting English assignment.  

She chose to write a report on children with Down's syndrome.  

She became interested after seeing some of these beautiful children in my speech therapy clinic. 

She chose to interview a mother to hear what life is like.  

The mother responded so beautifully, that I wanted to share it with you.  

It gave me a lot of strength and I am in awe of this amazing woman!

All names have been changed to protect the privacy of this family.  

Thank you so much for sharing!

Here are my daughter's questions followed by the answers:

How did it feel when you found out you had a child with DS?

 We did not know that Chaim (name changed) would be born with Down Syndrome.  Although there are many tests that could be done while a woman is pregnant, we opted not to have them done.  The only reason they are done is to give the parents a chance to decide if they want to abort the baby....and that is not an option.  So we did not know until after he was born and there was suddenly a whole crowd of doctors in the delivery room that there was an issue.  The doctors came into the recovery room and broke the news to us that the baby had Down Syndrome and a heart defect.

So...how did it feel hearing the news?  
At first I was numb, not quite sure what the Dr. had said. Of course, having had a C-section and still being under the influence of anesthesia probably had a lot to do with that.  When I did have time to digest what they had said and what it meant, I was OK with the fact that the baby had Down Syndrome.  Yes it would be challenging to raise this child, but tell me what child does not come with a set of challenges.  Even the "normal" ones give you a run for your money.  And then there are those that seem normal at birth and  later begin their struggle.  At least we knew from the start where we stood.  No, the DS did not bother me...but the heart issue was a different story.  After all I worked  in Open Heart Surgery for many years, and I had not met a Pediatric Cardiothoracic Surgeon that I liked or trusted (and I knew quite a few).  So that's where I was so scared (internally.  Had to keep a strong facade for the other kids).  But I always told my kids that HASHEM does not give us a challenge we cannot handle and I truly believe that.  (Sometimes I think He has too much confidence in me, but who am I to judge).  So I had to tell myself the same thing and face the challenge.  I kept hearing the words of a BAKERS DOZEN book that I had read to my kids as a bedtime story.  They had a child with special challenges and they went to their Rabbi for advice.  He asked them if they thought HASHEM makes mistakes.  They looked at him baffled and he again asked "Do you believe that HASHEM makes mistakes?"  "No, of course not"  Your child is not a mistake.  HASHEM gave her the challenges she has in order to make her into the best person she can be.  These challenges are just one of the many means of getting there and achieving what she must in life. (not an exact quote but you get the idea)  I took those words very much to heart.

Does he integrate with other children?

Chaim gets along very well with other kids.  He can not keep up to their level when it comes to sports or timed games, but he talks to them and plays games that require taking turns or imagination.  In school he is in a special needs class, but does mainstream with "typical" children for lunch, gym, and art.  He also joins a "typical" class for one period a week for center time.    Chaim is also growing up with a younger brother.  As with any siblings they are the best of friends and the worst of enemies.  But it is interesting to watch them grow and play.  We went to see a possible school for Chaim for next year (a yeshivah for boys with Down Syndrome) and the boys were playing together building with blocks.  This is not a typical thing for a child with Down Syndrome or for a 2 and a half year old.  They will play near other kids but not with them.  But the boys seem to understand each other and are growing together.  A big part of the problem when interacting with other kids is his speech.  He still mumbles his words at times and has a lot of difficulty finding the right words to use at times.  He will gesture a lot, but can't always find words.  He also has trouble retelling things that happened, although with his speech therapy is Baruch HASHEM getting much better.

Do you feel like there is more work with him then the other children?

No.  As I said before, all kids come with challenges.  And we have had our share Baruch HASHEM.  In a way, in the beginning it was easier because he had so many therapists coming that I had several breaks during the day.  And we were lucky.  There are so many other medical issues that a child with Down Syndrome can be born with and bli ayin hara we did not experience any, other than the cardiac issue....which was a "mild" case and was repaired at the age of 8 months.  Prior to the surgery he was weak and if it rained he slept all day (i guess there is less oxygen in the air when it is humid or rains and he felt it with his heart defect).  After the surgery and closure of the two holes he thrived Baruch HASHEM.

Can you tell me a nice story about him?

Like I said above, he is always appreciative of what he has and what people do for him, but he can be really really really stubborn at times too.  And then there are the times he just sits down and turns into a wet noodle ( he won't budge and you can't pick him up because he is so low tone that it is like trying to pick up a wet noodle.  he just slips right out of your hand)

He is very friendly and seems to be very popular.  No matter where we go someone is shouting out "Hey Chaim" or "Hi Kaim.   We went to a county fair and as we were leaving, in a crowd of people, there was another crowd of people coming in.  All of a sudden I hear this little voice shouting "Hey mommy, it's Kaim.  That's Kaim."  I look up and there is a little blond girl with blond hair talking to a dark skinned woman whose hair is in multicolored braids.  It seems she goes to the same public school as Chaim.  Another day we went to a CVS pharmacy that I don't usually go to.  When we get up to the cash register the cashier starts talking to Chaim and asks him what his name is.  He asks her "What's your name?"  She says "What's your name?"  This goes back and forth for a while.  Now mind you I have never met this woman before and I figure she is just talking to a kid and being friendly.  After several more rounds of "What's your name?" she looks at him and asks....."Is your name Kaim?"   WHOA.  Wait just one minute.  So I say to her "and who are you? Do you know him from somewhere?" and she says.."Oh, this is just my summer job.  I work in the cafeteria at the public school that he goes to"  ( just goes to show that you always have to behave since you never know who is watching).  Then we went to a new public school this year to see if Chaim will go there next year and the person showing us around kept introducing us to the teachers and staff as Kaim's  family...."You know the Mayor"  It seems she met him and is sure he will come and run the school for them next year.

How has it changed your life in a positive way?

Wow, tough questions. Chaim teaches me to see the good in everything and to appreciate what I have.  He is very perceptive and notices the littlest changes in things.  If I move a nail in the wall he will know.  And he always makes sure to say Thank you.  "Mom, did you do ---------?  Oh, Thank you soooo much." or "Mom, did you buy _______.  You did?  Oh, thank you sooooo much."    Always very appreciative and grateful.

One last thing.   While it is great that he is so friendly and so well known ( I am serious I can't go anywhere without someone knowing him.)  I recall a story his Physical Therapist once said.  She said she was at a lecture once and the person asked "What do you think the strong point of a child with Down Syndrome is?"  Everyone of course answered that they are so friendly.  The lecturer answered "NO.  This is their weak point.  They are so cute and friendly that they will smile and get you to do anything for them....at the expense of their learning how to do it or doing the exercise they need to do to tone up."

We have all been given strengths and weaknesses from HASHEM.  We can use our midot for good or chas v'shalom the opposite.  Will your anger cause you to lash out and destroy something or to fight back and make things right?  It is our choice.  HASHEM only gives us the challenges in life that we can handle.  They are given to us with love and to help us become the best people we can be.  Hatzlacha.

PESACH SHOPPING LIST

OK, I gave in.  Pesach is in the air...

Here is a shopping list to help you shop and check off the items that you need.

Thank you Annette Friedman for sharing this.

 Feel free to add or delete, depending on your families needs. There are 2 blank columns. One is to write the quantity of how many you will need and the other is to check it off when it is bought. Enjoy and don't work too hard :-). Ruchie
 

VAYAKHEL/ PEKUDEI

This week is Shabbat Para.

It is also Shabbat Mevarchim Rosh Chodesh Nissan which will be next Shabbat.

Chazak, Chazak Venischazake,

My mother baked a Parsha cake.

What is a Parsha cake you ask?

This sounds like it is a hard task.

It’s not too difficult you’ll see,

It’s fun for your whole family.

Friends and neighbors will be in awe,

It’s something that they never saw.

They’ll ask you when you learned to bake,

You’ll tell them it’s a “piece of cake”.

With activities you'll be able,

To learn Parsha at the Shabbat table.

Every week so much you will learn,

And all your neighbors will return.

Parsha activities are so unique,

You’ll be excited for next week…….

PARSHAT  VAYAKHEL

PARSHA POINTS:

·  At the beginning of the parasha, Bnei Yisrael are once again commanded to keep the mitzvah of Shabbat, and are forbidden to light fires on Shabbat.

·  In parashat Vaykhel, all the commandments about the Mishkan are executed. The Torah details the articles that were donated to the building of the Mishkan by Bnei Yisrael.

 

·  Betzalel ben Ori is made in charge of collecting and designing the vessels of the Mishkan and Ohaliav ben Achisamach is his assistant.

SHABBAT IMABBA:

Here is a great way for my father and I to learn a little bit of Parsha each week, even though we live far from each other.

( I like the play on words of Abba in the word Shabbat and bat (daughter...) and Imabba meaning "with Abba" and Ima Abba written together!  Thanks Abba and Ima :-)

 HAPPY BIRTHDAY TO MY WONDERFUL ABBA ad meah veesrim!  Thank you for learning with me every week!  That is why I continue this blog!  I love learning with you.

This week's  parshah of VAYAKHEL starts by saying: "And Moshe gathered together all the Community of Israel." (Exodus 35:1). According to Rashi, Moshe gathered all of the Community  the day following Yom Kippur, when Hashem had forgiven Bnei Yisrael for the sin of the golden calf.  He gathered everyone to charge them with the building of the Tabernacle.

This gathering consisted of all of Bnei Yisrael , the entire community. The Olelos Efraim sees a homiletical lesson in the assembly of the people on the day after Yom Kippur.
It is not enough to be forgiven on Yom Kippur itself, we must be able to carry this for the entire year.
The pasuk continues and says: "These are the things that Hashem commanded to do them".  Hashem commanded the Bnei Yisrael to have achdut amongst each other.  Wake up Bnei Yisrael- where is the Achdut???

Thought of the week:

The Torah tells us that every man and woman who wanted to contribute towards the building of the Mishkan, brought their contribution as an offering to Hashem. The Alshich notes that the Torah uses the word "every" to make an important point. The Torah wants to teach us that Hashem was equally pleased with the small contributions of the poor as he was pleased with the large contributions of the wealthy. To Hashem, the most important aspect of giving was not the amount, but rather the purity of the donator's intent.

There are many Jews who give tzedaka generously but who nonetheless feel that their mitzvah is not as significant to Hashem as the large donations of their wealthy neighbors. The Torah here teaches us that we can all equally rejoice in our mitzvah, because to Hashem, it is the intent rather than the amount that is important.

PLAYING WITH THE PARSHA:

·        This week the Parsha talks about Bnei Yisrael contributing their time and talents.  Discuss with your kids what they are talented in.  If your child is musical, maybe arrange going to a nursing home or hospital.  If they are good with kids they might be able to help out a mother in need.  Be creative with your kids.  Every child has strong qualities.

·        This weeks parsha talks about cooperation and working together.  The game Jenga is a lot of fun.  Jenga consists of 54 wooden rectangular pieces. You layer 3 rectangular pieces on the first row and then 3 more rectangular pieces in the opposite direction on top of that.  You continue until you finish using all the pieces.  Each player in turn pulls out a piece without knocking the tower over.  This focuses on concentration and working together.  Talk about cooperation.

·        Put a puzzle together.  Talk about how details are important and trying to fit everything together to get the whole picture.  Discuss this with this week’s parsha with building of the mishkan and everything had to be complete.

FOOD FOR THOUGHT:

Contributions:

What you will need:

1. All kinds of candy that you have in your house.

2. Serving plate with dividers.

· These candies represent all the contributions that the Bnei Yisrael contributed towards the mishkan.  I particularly love this dessert because this Parsha falls out between Purim and Pesach and is a great way to get rid of leftover candy!

PARSHAT PEKUDEI

PARSHA POINTS:

·  The parasha begins with an even more detailed description of the materials that dedicated to build it.

·  The garments of the Kohanim (bigdei Kehuna) are made: first the Ephod and the Choshen, then the shirts, hats, pants, belts and finally the tzitz.

·  When everything is done, the vessels are brought to Moshe. Hashem then commands Moshe to build the Mishkan, put all the vessels in their place and anoint them with the oil of anointment. Moshe finishes putting the Mishkan together on the first day of Nissan, in the second year of yetziat mitzrayim. After the Mishkan is done, the ananei hakavod (Hashem's glory) rest over the Mishkan.  

Thought of the week:

The Gemara in Brachot tells us that Torah is one of four activities that require chizuk. According to Rashi, this means that success in these activities requires a person to constantly channel all of his energy into them. This important message is reinforced by our minhag of saying Chazak Chazak Venitchazek when we finish reading each of the five Seforim in the Torah.

After completing a task, the natural tendency for a person is to want to move on to new frontiers and challenges. While it is important for a person to cover new ground in the Torah, it is also critical to review what was already learned. Regarding the learning of Torah, the Gemara in Chagiga teaches us that you can’t compare a person who learned something one hundred times to a person who learned it one hundred and one times. The Gemara in Sanhedrin teaches us that a person who learns and doesn’t review is like someone who plants but does not harvest. Each time we review something in the Torah, not only do we commit it more to memory, but we very often uncover something new and exciting that we never noticed before.

PLAYING WITH THE PARSHA:

·        You need a bar of chocolate, knife and forks, a dice, and a bag with items of clothing that the kohen needed to wear. The first person rolls the die followed by each person in turn. When someone rolls a six he then opens the bag of clothing are and starts putting them on. Once he is completely dressed he can then start trying to eat the bar of chocolate, with the knife and fork of course, cutting one square at a time. While this is happening, the next player continues rolling the die until someone else throws a six.  The person who is eating the chocolate has to stop and get undressed while the next person tries to get dressed and start eating the chocolate etc... The game obviously ends once the chocolate has been eaten.

·        Count out and fill a glass jar with gold, silver and copper candy. Each child should try to guess how many candies are in the jar. The child with the closest guess is the winner of the candy.

·        Go around and collect items on a tray. Lay them all out and pass the tray around. Remove the tray and have everyone list what was on tray. The one that lists the most objects is the winner. Discuss how Moshe had to inspect everything in the mishkan and make sure everything was all right.

In this week’s Parsha, Moshe asked the Bnei Yisrael to donate their time, their talents, and materials for the construction of the Mishkan. The Bnei Yisrael responded with a lot of enthusiasm.

Hashem created every one of His children with special talents. Every person is unique. Go around the Shabbat table and have everyone think about one of their talents and how they could help another person.  For example, if someone is musical, have them think about going to an old age home and performing there.

Then everyone should take a turn and say something good that they did for someone this past week.  It could be helping out a friend, your parents etc…

Our family does this activity every Shabbat.  We all try to think of how we could help people all through the week.  You should have as much enthusiasm helping one another as the Bnei Yisrael did!

PARSHA PUZZLE:

You cannot plow, reap, gather, knead,

Winnow, grind, sift or plant a seed.

Bad from good you can’t separate,

You cannot bake, so please just wait.

You can’t shear, bleach, comb, spin or dye,

You can’t sew, weave, tie or untie,

Thread a loom, arrange thread, prepare,

Remove material or tear.

Slaughter, skin, salt, smooth- almost done,

We learn all these from the mishkan.

Making ruled lines, cutting or a trap,

There will be so much time to take a nap.

One cannot build, carry or destroy,

Follow Mitzvot, you will have such joy.

Blow out a fire or ignite,

Melachot you should do them right.

You cannot add the final touch,

Can you guess???  You learned so much!!

FOOD FOR THOUGHT:

The Shechinah descended in a cloud:

What you will need:

 

1.   Chocolate cake

2.   Chocolate cream

3.   Rich’s whip

Use 3 separate bowls.

Chocolate Cake Recipe:

1 cup sugar

1 cups flour

1/3 cup cocoa

1/2 teaspoon salt

3/4 teaspoon baking powder

3/4 teaspoons baking soda

1/4 cup oil

1/2 cup non dairy creamer

1 teaspoon vanilla extract

1 large egg

1/2 cup of boiling water

Preheat oven to 350 degrees.

Combine all the ingredients together and beat with an electrical mixer.  Pour into a round 8 inch pan.

Bake for 40-50 minutes or until a toothpick comes out clean.

Chocolate cream:

100 grams margarine

¾ cup sugar

6 tbs. cocoa

2 Tbs. oil

1 Tbs. vanilla

Place all these ingredients in a bowl.  Mix in a mixer for about 1 minute.  Put in 2 eggs one at a time.

Rich’s whip:

Use 4 small containers of Rich’s whip or 2 large one.  Pour them into a bowl and mix  in a mixer until it becomes stiff- about 5 minutes.

· Place the cooled chocolate cake on the bottom of a trifle bowl.

·  Spread the chocolate cream on top.

· Whip the Rich’s whip and spread  it on top. 

This resembles the Shechina in a cloud. This is a “heavenly" dessert!

Enjoy!  Have a great Shabbat!

Looking forward to seeing you next week!

Ruchie

KI TISA

PARSHAT KI TISA

PARSHA POINTS:

·        The parsha begins by Hashem commanding Moshe about a few more things that will be needed in the Mishkan: the Kiyor (sink) which will be used to wash the Kohanim's hands and feet, incense, and oil of anointment.

·   In addition, Moshe instructs all of Bnei Yisrael to donate a half a shekel in order to complete the building of the Mishkan.

·   Next, the parasha tells us that Moshe received the Ten Commandments on stone tablets from Hashem and is planning to come down.

·   Bnei Yisrael had miscounted the 40 days and 40 nights that Moshe was supposed to be up with G-d, and when they see that he hasn't returned, they ask Aharon to build them an idol. Aharon tried to buy time and told them to come back the next day with gol

·   The next day, Aharon throws the gold in the fire and the idol is made. Moshe comes down when Bnei Yisrael are singing and dancing around the idol. When he sees this, he smashes the tablets to the ground which break them. Moshe destroyed the idol and commands the tribe of Leivi to kill any Jew caught worshipping the idol.

·   The next day, Moshe goes up to Hashem and begs him not to kill all of Am Yisrael. Moshe receives new tablets and Hashem forgives Bnei Yisrael.

Thought of the week:

Imagine how special and dear the Luchot were. How often do we receive something written and shaped by Hashem? It must have been very difficult for Moshe to break such a priceless gift!

The Sforno points out that when Moshe broke the Luchot. he did not break the Luchot when Hashem informed him about the Egel Hazahav. Moshe only broke the Luchot when he saw the Jews dancing joyously in front of the Egel Hazahav. The Sforno explains that Moshe had planned to go down, convince the Jews to do tshuva and then elevate them back to their spiritual level of Matan Torah. When Moshe saw that the Jews were sinning joyously, he realized that it would not be possible for the Jews to return to their previous spiritual level and they were not worthy to have the Luchot made by Hashem.

The Sforno teaches us the power that joy infuses into a person’s actions and why it is important to be oved Hashem besimcha. By joyously fulfilling the mitzvot, the Jewish people demonstrate that they recognize how lucky they feel to be Hashem’s nation. If a person was singled out by the prime minister or president for a specific task, that person would be proud and happy to have been chosen, even if the task was difficult. So too we should be proud to be Hashem’s chosen people and we should keep this in mind when we perform the mitzvot!

SHABBAT IMABBA:

Here is a great way for my father and I to learn a little bit of Parsha each week, even though we live far from each other.
( I like the play on words of Abba in the word Shabbat and bat (daughter...) and Imabba meaning "with Abba" and Ima Abba written together!  Thanks Abba and Ima :-)

 This week's parsha talks about machatzit hashekel.  If you look at the word מחצית, the middle letter is tzadi.  The 2 letters surrounding the tzadi are chet and yud- chai.  The 2 letters away from the tzadi are mem and taf- meit (dead).  If you come close to tzidkut or tzedaka- then chai you will live and also feel alive.  If you go further away- met- it is like you are dead.

In this parsha it says venatnu- and they gave.  This talks about tzedaka.  It is spelled the same both forwards and backwards.  If  you give charity, you are sure to get back a reward.

PLAYING WITH THE PARSHA:

·        This week’s parsha talks about the 39 melachot of Shabbat.  Before Shabbat write down the 39 melachot of Shabbat on pieces of paper.  Write down on another 39 pieces of paper a melacha connected to it.  For example:  We cannot plant flowers= zoreah (planting).  See how many melachot your kids could match.

·   Every person had to give a half a shekel no matter if he was rich or poor.   We learn that we should give tzedaka with happiness.  It does not matter how much you can give, as long as you do it with jow.  Involve your kids this week in giving tzedaka.  Whether it is making sure you give money in the tzedaka box or having the kids collect food for poor people and donate it to a needy charity.  The kids will feel the importance of giving to someone who is in need.

PARSHA PUZZLE:

Bnei Yisrael saw that Moshe was delayed,

They began to worry, they started to be afraid.

Who will be our leader?  Moshe isn’t here.

They ran to ask Aharon, they all started to fear.

Aharon wasn’t sure what to do with what he was told,

He told the Bnei Yisrael to bring him all the gold.

Aharon did not want to see the Bnei Yisrael fall,

He tried to take his time; he tried to have them stall.

Bnei Yisrael saw the image of a golden calf,

They started singing and dancing, with joy they all did laugh.

Hashem saw what was happening, he was very mad,

How could Bnei Yisrael not realize all the goodness that they had?

What did Hashem want to do to them and what did Moshe plead?

Look it up in your Chumash, go ahead and read.

This is a famous story, do you remember it?

What happened to Moshe when he brought down the luchot habrit?

FOOD FOR THOUGHT:

Broken Luchot:

What you will need:

·  Cake pan of the luchos (or a regular 9x13 pan and cut in the shape of luchos)

·   Frosting (optional)

·   Cut the cake in half

Peach Cake:

3	Eggs, well beaten
1 3/4	Cup Sugar
1 Cup	Cooking Oil
2 Cups	Flour
1 Tsp	Salt
1 Tsp	Cinnamon
2 Cups	Sliced Peaches [can use fresh or canned]
1/2 Cup	Chopped Walnuts
1 Tsp	Baking Soda
Mix thoroughly by hand.
Pour in greased and floured 13" x 9" pan or luchos pan.
Bake at 375 degrees for 50 minutes. When the cake has cooled you can frost it by whipping a pareve dessert whip.  You can add a drop of black food coloring to give it a grey effect. If you have chocolate molds of the alef beis, or luchos chocolate molds, you could make those and add it to your cake. Enjoy!  Have a great Shabbat! Ruchie