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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  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.

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Gary Direnfeld, MSW, RSW
(905) 628-4847  

gary@yoursocialworker.com

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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.

 

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