Since Paige was born, we've had the chance to do some really fun things, things we never would have had the opportunity to do if she had not been born with Special Needs.

In May of '97 Paige was in "Today's Parent" magazine, in a discussion about including children with disabilities in their publication. It seemed that the only time a child with a visible 'difference' was shown was when that particular difference was being discussed.

For example, there were never articles about every day things that had children in a wheelchair, or with Down Syndrome or Cerebral Palsy playing with other children. Our kids were shown only in articles specifically relating to their handicaps.

It seems like a small thing, but a leader in the parenting community such as this should take that crucial first step in integrating our children into our everyday world.

When they make these distinctions, they are telling others its o.k. to do so as well to see handicap before child, and that is never, never o.k.

In May '98, Paige was chosen by her hospital, CHEO, as the baby to represent the telethon for that weekend. It was such a fun time! We had a big interview and picture taking session, and Paige received full page newspaper ads in 3 different newspapers.

The articles were titled, "We believe every child is a reason to support CHEO, Paige Lapierre is one of our favorites."

There were posters up all over the hospital with her sweet smile on it, and she even made a commercial.

The commercial showed various children that were hospitalized at the time, and in the background, the song, "What a Wonderful World" was playing. On the very last clip of the commercial, a little girl about three years old was blowing bubbles, and one of the bubbles came up to the camera, and had the word 'hope' in it. When the bubble burst, it showed Paige's face.

It was so neat to have her be a little celebrity for a while.

Then, in September '98, we were asked to give a presentation to 200 first year med students about Down Syndrome, how it felt to receive the diagnosis, suggestions on how to make it easier on parents, etc.

Of course, Paige stole the show clapping her hands and waving at the crowd, babbling so loudly as I spoke.

I was so encouraged--the students were so eager, so full of questions, and very friendly. We ended up going way over our 2 hour class, and afterward, so many of them came and said hello to Paige, passed her around, and gave her lots of hugs and kisses.

Following is the outline I prepared for that presentation. Each student was given a copy of it to take with them. I hope they remember forever that Down Syndrome is much more than just a diagnosis on a piece of paper.

My Heart, My Soul, My Life,..My Darling Paige�Together, we have no limits.
--note I left on Paige's incubator while she was in NICU

• Diagnosis is the moment that stands still in time, for your whole life
• The parents may seem dumbfounded like they are not listening, but they will remember your words for the rest of their lives.
• I bet every parent you ever encounter with a Special Needs child can relay their whole story to you, word for word, how the doctor told them, their reactions, etc.
• Statistically, you will be telling parents of a newborn that you suspect Down Syndrome much more often than you will be telling them of a prenatal diagnosis of Down Syndrome.
• 93% of all people who learn about their unborn child having Down Syndrome, abort.
• I think the statistical percentage of parents who knew their child would have Down Syndrome before birth is something like 5-10%.
• When I got 'the news'it was 2 days before Christmas. I was at home, making Christmas cookies. Wayne was at the gym. My OB/Gyn called and said to me about 5 times, "Are you sitting down?" She kept apologizing, and when I heard the words "Its Down Syndrome" my heart just leapt! Yahoo!!! It WASN'T Trisomy 18.
• Almost immediately, even though I was quite far along in my pregnancy, the possibility of abortion was mentioned.
• I actually felt so bad for her that I went and bought her a card, apologizing for ruining her holiday.
• Later I felt overwhelmed, and the questions started. That's when it would have been nice to have someone to answer my questions.

• "How 'severe' is it?"
• Its o.k. to tell parents that you don't know. One analogy that my dr. used is this, "Just like any other child, you can't look at a newborn baby and predict what his or her future holds." There is no way that we would ever make that speculation or even probably think about it in an uneventful birth.
• "Should I send out birth announcements/fill a baby book?"
• Of course you should! This is the celebration of your child. You and your baby deserve to celebrate every bit as much as any other family. You will be as proud of this child as any other.
• "Will My Baby Know Me? Will she smile, laugh, walk talk, read, learn?"
• My initial knowledge of Down Syndrome was so limited that I wasn't sure my baby would ever 'recognize' me as her Mother. Of course, that is not a question now, because my baby puts her arms up and says my name. I had no idea what my baby would be able to do.

• I felt that telling our parents was one of the hardest things to do. I was so afraid to make them 'sad.'
• Both of our sets of parents were from a generation that would have been told to take the baby home (or institutionalize him or her) and not much else. Certainly they were told not to 'expect much.'
• �It helped to be 'armed' with information, the NDSS has some really, really nice brochures, some made especially for grandparents.
• �I found a 'little' information was good, but they did get overwhelmed quite easily. The best stuff was the pamphlets that they could read through.

• We told her that the baby had Down Syndrome, that meant that she would take a little bit longer to learn to do things, but that she would still learn.
• We played the 'different yet the same' game. When Paige was born, we showed her that Paige and Mommy had blue eyes, so we were the same, that Dakotah and Daddy had brown eyes, so they were the same, but that Dakotah's eyes were different than Paige's. We pointed out all kinds of different things and same things, and just added DS to the list.

• "I'm sorry" or any form of pity.
• Pity is not what new parents want or need. What they need is love and acceptance of their new baby. They need to be treated like new parents with a new little addition to their family.
• �"God Only Gives Special Babies to Special People."
• They probably don't feel very special right now. Also, some parents may be a little mad at God. And they may not feel up to the challenge of being so 'special.' They may be wishing that God didn't think they were so very special.
• "They Are Such Loving People"
• Saying this robs their child of his or her personality and perpetuates the myth that all people with Down Syndrome are the same.
• "We are running some tests. We'll let you know soon"
• Waiting is the hardest part of all...if you have results, tell them. Don't assume that you are comforting someone by saying, 'we'll see--tell them what you suspect.

• "Congratulations."
• They just had a baby! What better response to show that you love them and their baby than to say congratulations. It made us feel like 'normal' parents when someone said that to us.
• "He/She looks just like you."
• The baby probably does look like someone in the family. All of the baby's genes are from the family. Remind them of that, and show them what you see as similarities.
• "This is why we suspect Down Syndrome"
• Show them the things you 'see' about DS--brushfield spots, simian creases, almond shaped eyes--they will be looking for them, it helps to put them at ease by showing them.
• "Down Syndrome is a very small part of your child."
• Point out that it will feel like a very big part for a while, as they come to learn about Down Syndrome and accept it into their lives. But very quickly, it will be their baby first and DS will take its place where it belongs. Tell them that very soon it won't be the most interesting or curious thing about their child. That smiles and rolling over will.
• "Your child has a Syndrome, he/she is not a syndrome."
• This may sound really trivial, but there is a big difference. The child doesn't suddenly become a "Down Syndrome Baby," the baby is not "Downs". Always, always remember, baby first.
• "Your joys will be as great."
• Emphasize to them that their children will still meet developmental stages, even if they are a bit slower. They will smile and laugh and walk and do all the other things 'babies' do. The joy they will feel at their child's accomplishments will be exactly the same kind of joy they feel toward their other children.
• "Don't set limits or impose expectations."
• All children that we bring to our families will far exceed some expectations we have for them, and fall behind in others. Children with Down Syndrome are no different.
• "Don't try to predict your future."
• There have been tremendous advances for children with Down Syndrome in recent years. Heath care is much more stringent. Proper nutrition is an important part of our children's lives.
• Early Intervention Programs are more readily available. The importance of integration at a young age is realized.
• "Don't Read Too Far Ahead"
• Much of the information you will find about people with Down Syndrome that are 30 or 40 years old may very well be quite different than the information that we will find on our children when they are 30 or 40.
• Remind them that 30 or 40 years ago, parents were given very little information on how to help their children reach their maximum potential.

• Offer support. Let them know there are resources (other than themselves) out there that can help them.
• Give them information on sources (parent paks, etc. ask them if they want to talk to other parents in your practice) Parent paks are available through the Down Syndrome Society--keep some on hand.
• Keep a copy of Healthcare Guidelines for children with Down Syndrome available for yourselves, and them. It is available through the NDSS or through the internet.
• Give them some idea what 'extras' they can expect, in terms of healthcare. Explain that their baby's heart will have to be check, that hearing will be evaluated more often, etc. Go through the Guidelines with them, if they choose. Explaining it will make it much less intimidating.
• Don't overdo the gloom and doom. I read so much about how 'sickly' children with Down Syndrome are, and at 17 months, Paige has not even had a cold, never a runny nose, nothing. All of her health problems have been directly related to her TEF.
• Let them know, either directly, or by a consult, what is available for them in terms of early intervention�infant stimulation, physio, occupational therapies etc.
• Most of all, let them know that they are not alone in this diagnosis--that there are other families and how they can hook up with someone else who is just a few steps ahead of them.
• Be compassionate. Realize how overwhelmed the parents are feeling at all of the information you are giving them. Explain that they don't have to 'know it all' immediately.

• Husbands and wives tend to take it very differently.
• One tends to be the researcher, learning everything there possibly is to know, while the other takes the more laid back approach.
• Often, each will feel like the other is reacting in a 'wrong' way. The more 'aggressive' partner will assume the other doesn't care enough. The other will assume that his or her partner is overreacting.
• The surprise is not how different she is, but how much the same she is.
• Paige is very much like Dakotah was as a baby. She looks a great deal like her. I often get comments that she looks 'just like her mother.'
• Paige loves to play and be a part of our family. Like all babies, she splashes in the tub and laughs right out loud. She babbles and says Momma and Dadda already.
• Her achievements are just as wonderful, and as much of a cause for celebration as Dakotah's are.
• Our family is 'normal', like every other family in our neighborhood. We still do all the same things we did before Down Syndrome became a part of our lives.
• Life lessons are not always the lessons we teach, but sometimes the ones we learn.
• Paige teaches us lessons every single day. About patience, and unconditional love, and compassion, in ways we would have never dreamed possible.
• She has taught me the meaning of one day at a time, and sometimes, one hour at a time. The days when she was so ill were devastatingly difficult, but all of the other days have been so incredibly wonderful, each bringing a new discovery.
• She has opened my heart up to a whole new world, one that includes people I love with all my heart, parents of other children with Special Needs.
• She has taught us great compassion. Her 4 year old sister 'gets it', when so many people in the world don't.
• Paige brings us many extras.
• We have learned how to turn 'playtime' into Infant Stimulation Time, how to focus our fun to help Paige.
• We know more about Physio Therapy and Occupational Therapy and Speech Therapy, than we ever thought we would.
• I have learned some Sign Language to facilitate Total Communication.
• I have learned how to juggle doctor's appointments and therapy sessions into our regular every day lives.
• All of these 'extras' are one I gladly have, in exchange for offering Paige the things she needs to soar above the stars. It is no more or no less than I would do for any of my children.
• Paige is greatness. Her greatness may come in different forms than most, but it is greatness all the same.
• Greatness is not measured in a paycheck, or a title. It is measured by things such as capacity to love, or to make a difference in the world.
• Paige will make a difference. Together, we will change how people view Down Syndrome.
• I believe in Paige, believe that she will lead a happy, full life.

When Paige was born, I felt as if someone had turned a light on for me, had shown me what my destiny in life was. It was an incredibly uplifting, spiritual experience. I felt my heart soar, saw her soul before me.

Please, when you give someone the diagnosis of Down Syndrome, remember more than the karaotype of Trisomy 21. Remember this little girl with hair the color of spun gold, and eyes the color of your favorite pair of faded blue jeans. Remember this sweet little smile.

Remember my words, the sound of joy in my voice as I tell you about her.

Please don't forget Paige.

And someday, when you are faced with telling someone that their baby has Down Syndrome, start with, "Let me tell you a story about a little girl named Paige"

"Wherever you go, whatever you do, take time to make a difference in the life of a child"

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