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Thursday, March 22, 2012


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. 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 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.

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