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8
heart-felt replies... Down Syndrome
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The following stories are in response to my article, October 26, regarding a
mother, pregnant with a child with Down syndrome. Thank you for your kind
stories of inspiration.
Gary Direnfeld.
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Dear Gary, every Down story is different. I am a respite care provider and can
sum it up like this:
This mom and her family will discover that there is a love inside them that
exists that they do not know about yet. A family's love for a down child is so
intense, and so strong and so protective that it is overwhelming.
Yes - there will be hard work, challenges and frustrations but the family with a
child with D.S. is blessed.
A child with Down syndrome has a special smile, a special personality and a
simple joy for life that puts a different perspective on your place in the
world.
God bless this woman and her family.
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Hi Gary. I just read your article in the Spectator today. I would like to say to
the lady pregnant with the Down Syndrome baby, take as long as you need to make
a decision. Get as much information as possible. Talking to other parents that
have been in your situation can be very helpful.
I have 3 children. My second daughter has Downs. I did not have any tests
done, so did not find out until she was born. For me, the tests wouldn't
have made any difference. I would have only worried more throughout my
pregnancy. But, we each have to do what is right for ourselves.
It was a great shock to me and my husband. But, after recovering from the
shock only one thing mattered. She is our daughter and we love her. There
were a lot of struggles and there are still a lot of challenges. There are
health concerns, developmental concerns along with the normal concerns
when you have children. We have been blessed with wonderful people in our
lives.
The therapist she has had have been terrific. With the help of all of our
therapists, we taught her sign language. It was so amazing to be see this
little girl able to communicate through sign. She started talking just when she
entered J.K. She is quite a chatter box. She did not walk until 2 ½
years old. Now, she can at 6 years old, run very quickly. She also
really loves to dance. She attend a regular dance class every Saturday.
She has quite a temper at times, and thoroughly enjoys messing. But,
she is cute even then. She was great addition to our family. I can not
imagine life without her. I believe she has enriched not only our lives, but the
lives of almost every one she meets. If I could go back in time I
would not change anything.
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Your article regarding the Mom being told that her baby will have Down Syndrome
really hit home for me.
I too was an older and pregnant mom-to-be but declined to have an amniocentesis
because we felt it was not necessary. You can imagine our pain and sorrow
after delivering our daughter and hearing the words from the doctor "Are
you familiar with Down Syndrome?" Our world as we knew it was
over!!! At least that's how it felt for a while. All I could
think about was the phrase (which I now find extremely offensive) mentally
retarded! Our beautiful little girl, not only had Down Syndrome, but a
heart defect which would require open heart surgery. The first year of her
life was filled with specialists, hospital stays and lots of tears. We
almost lost her three times. I didn't even want to think about having a
second child.
Now, fast forward fourteen years later, she is a beautiful, fun, lovable young
lady who lights up room whenever she enters it. She just began her first
year of high school, which she loves, and her independence is just shining
through. She is a high functioning, well adjusted child with special
needs.
Let's face it, having children is challenging, but having a child which special
needs is even more challenging. We treat our daughter like any other
normal child. We never look at her differently than our other daughter.
Yes, we ended up having another child four years after our first and they
are extremely close and caring to one another.
Now is the time for that Mom to surround herself with lots of information.
I only wish I had known before hand. It would have allowed me and my
family to prepare for our child. The Down Syndrome Association of Hamilton
as well as the Infant Parent program at Chedoke Hospital was very supportive.
We live in a society where we what everything to be perfect, including ourselves
and our children. Life is not perfect. That's OKAY because we
couldn't imagine our lives without her!!!
We are truly blessed!!
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Please tell your reader that in 1985 our first child was born with Down
Syndrome. I cried non stop for the first 4 months and my husband told me that he
wasn't sure if he wanted to keep the baby. It felt like a disaster.
But it didn't take long before our initial shock wore off. Our child was
amazing. My husband and son became inseparable.
Years later my husband told me he felt ashamed that he had ever thought about
giving up his child. He was the first to acknowledge that having our son has
significantly enriched the quality of his life. Our girls (who came later) both
acknowledge how they see life differently because of their brother, and how
their drive to contribute to the world is
directly connected to the strength they witnessed and experienced in their
brother.
My son had many difficulties, including health problems, but the joy and
inspiration he brought to everyone around him was remarkable.
The reader's child will be different, but those differences do not mean
"less than". In many ways the differences will translate into extra
special. As my son would say, tell them to "be brave". Our son was a
treasure and theirs will be too.
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I have been working with Down syndrome and other developmentally delayed adults
for several years now, and have learned much about unconditional love and
acceptance from them. There are many levels of ability and stages in their
development, and each one is different as is every person.
I would like to encourage this soon-to-be mom, that like every mom, her heart
will grow in leaps and bounds to a measure she cannot even imagine, as she
watches her child meet every milestone. I would also like to reassure her that
she will not face the challenges alone, but with the amazing support of the Down
Syndrome Association of Hamilton and Community Living Hamilton, which in this
area are amazing.
I would also like to recommend watching a video of Robert Pio Hajjar, a very
special Down Syndrome young man who is making a difference and giving a voice to
Down syndrome people . Founder of www.IDEAL-WAY.ca,
you can see a video clip of him on youtube . It's called "Motivational
Speaker Robert Pio Hajjar, born with Down Syndrome, Founder of IDEAL-WAY.ca
charity.
Take whatever you care to from my e-mail, if it will be helpful. Having a baby
is always a mixture of joy and fear. Having a baby with special needs must be
exponentially even more terrifying. I wish her much joy and comfort in the fact
that she is not alone.
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Thank you so much for representing us so well! I had two people call me to let
me know there was a terrific piece about Down syndrome in the paper yesterday. I
came home to find three copies cut out and in my mailbox.
I/we especially appreciate the direction to the Down Syndrome Association of
Hamilton. Due to confidentiality regulations, we have no way to contact new
families; we have to wait until they're ready to talk to us. And no matter how
well the family copes with their new normal, there are still supports we can
offer them. The more we can reach out to families, the better for their
children. www.dsah.ca
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I was totally moved and inspired by your article. Thank-you!!
My wife and I had decided to test for various disabilities when pregnant with
our third child. The test came back negative. We were relieved and enjoyed
the remainder of our pregnancy.
The day that our son was born came mixed feelings, that of joy and shock. You
see, our son had Down Syndrome.
We went through a period, immediately after he was born, of denial. There
was no way our little boy had Down Syndrome. The journey was long and full
of many tears, however, once we overcame our own personal feelings, we
discovered the person that our son was becoming. He was a very easy baby to love
and to be loved.
Then our world turned upside down, we found out that our little boy had
leukemia. Suddenly, the fact that he had Down Syndrome didn't matter. We
were trying to save his life.
Again, we were discovering that this little boy, was strong willed and happy
through all that he went through.
September 2009, after two years and thirty-two days of treatment, we left the
hospital with our son. We had discovered that through it all, he was a
beacon of light who touched many people, with his strength and unceasing smile.
He is our little ANGEL.
Our son can't walk yet and has a limited vocabulary, however, for all that he
lacks he makes up in personality. I often say to my wife, "I would
have three more children with Down Syndrome, if God would allow it."
For all of those parents that are about to experience a child with Down
Syndrome, it's not what you think or what people will tell, because these
children will touch a part of you that your other children simply can't reach.
My wife and I would be more than happy to sit down with people that are and will
be experiencing a child with Down Syndrome.
Thanks again for your article.
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I am replying to your recent article regarding a women finding out her baby will
have Down Syndrome. I too am an "older" mother (a ripe old 37).
We opted for the integrated prenatal screen which came back negative for
Down Syndrome and Spina Bifida. Being individuals working in research
based professions - both of us in health care - we thought we would want to be
prepared for a child with a disability. No such luck because our daughter
came as a complete surprise after the results of our IPS.
Of course it is devastating when you first get the news. It's feels like a
huge gaping hole in your heart that sucks everything out of you. Then you
feel numb. It takes time to process and readjust your thinking. You
need to educate yourself and talk to other parents who have raised children with
Down Syndrome. It took me a couple days to feel okay. I figured I
had to get on with it. Our daughter was a baby first. She was the
same baby she was before we found out, and she needed her parents.
Our daughter is now 15 months old. She seems to be the happiest baby there
ever was. She brings joy to our lives, and seems to bring joy to anyone
who meets her. We love her more than we ever could have imagined and we
agree we wouldn't trade her for anything in the world. Being a Mom has
been such a fun and positive experience. Sure there are differences, but
every child and every parent faces obstacles. We feel so blessed to have
her in our lives.
-----
Gary
Direnfeld, MSW, RSW
(905) 628-4847
gary@yoursocialworker.com
www.yoursocialworker.com
Gary Direnfeld is a social worker in private practice. Courts in Ontario,
Canada, consider Gary an expert on child development, parent-child
relations, marital and family therapy, custody and access recommendations,
social work and an expert for the purpose of giving a critique on a
Section 112 (social work) report.
Call
Gary for your next conference and for expert opinion on family matters.
Services include counselling, mediation, assessment, assessment critiques
and workshops.
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information on Direnfeld's book, Raising Kids Without Raising Cane,
click
here.
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