Welcome to Our House - The Analogy ©

Having a baby is special. For some, it’s a lifelong dream, for others, a wonderful surprise. Either way, many of us have thought about taking this journey and whether it’s planned or a pleasant surprise, we all have preconceived ideas about what our child will look and be like. But what if it isn’t what we planned or expected? This is a short story I have written for parents who have or are expecting an exceptionally special child.

Welcome to our House – An analogy

After many months of dreaming, you finally decide it’s time. You are going to build that perfect house of your dreams. You have saved and saved, and now it’s time to put your plan into action. You find a wonderful, perfect piece of land in the city. It’s exactly what you are looking for – because it’s the plan that everyone talks about. You envision the all brick house sitting on luscious green grass, surrounded by a white picket fence. Inside is a marble foyer leading into a family room with beautiful oak hardwood floors. Granite lines the kitchen counter tops and there is an island sink in the middle. Upstairs has four perfect bedrooms and the master bedroom has an ensuite bathroom and an enormous walk-in closet, of course. It’s truly a dream come true, and it’s only a matter of time. You purchase the land and think to yourself, in nine short months, you will have it all.

But suddenly your agent calls to tell you, the land is not properly zoned, and the city has not approved it for building your perfect home. They have instead, given you land in the country, where an old country home sits. You are absolutely devastated, your dreams vanishing right before your eyes. You know you can’t back out now, you need a place to live, and despite it not being what you wanted, you know that somehow you will manage and that you can continue on.

You tell everyone what has happened, and everyone is disappointed, some even offering their condolences. You know that everyone else has a nice city home, and that was what you had planned, but you have to come to terms with the fact that you must learn to live in the country.

You go to see the property every month until closing and something funny happens. You start to fall in love with the place. The air is fresh, it’s peaceful and serene. There’s a pond on the land, and the house, though not a new all brick home, is quaint, and has lots of hidden potential. You soon realize it’s not a awful place, it’s just a different place. It’s slower paced than the city, less noisy and flamboyant, but it’s beautiful none the less. And in the process, you soon realize you may even get to meet some new and wonderful neighbours.

Its closing day and you suddenly find yourself full of anticipation, but you are still a little worried. After all, it isn’t what you had originally hoped for, and the house may need some repairs. But you are determined to accept it, and tackle everything one step at a time. You open the front door, and suddenly you are thrilled with what you see. The house is lovely, and has lots of character. The rooms are smaller but it’s decorated with beautiful attention and detail. The kitchen has marble instead of granite, and the bathroom has a soaker tub instead of a Jacuzzi. There isn’t a walk-in closet in sight, but the rooms all come with an indescribable view. Somehow, you just know that it was always meant to be and that this is now home.

This is my analogy of what it will be like for people who discover that they will be caring for a baby with Down syndrome. For us, it is not a terrible place to be, it is a journey full of surprises, milestones and discovery like any other child. And as the story suggests, sometimes it’s only a matter of ‘point of view’, and surprisingly, once you have been there, you don’t want to be anywhere else. The journey, like all others doesn’t come without some bumps in the road, but once you find your way, it’s all about the place you discovered, in most cases - quite by random chance
Author: Sandi Graham-McWade, Copyright
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Down syndrome - The Diagnosis

IF you have just discovered you are having (or had) a baby with Down syndrome....  

Please read this.

When I learned that my baby was going to have Down syndrome, I felt like the world had closed in on me.  After about two hours of crying and wondering, I knew that I needed to know more before I could do anything else.  I needed support, and I needed information.  Which ever way you get support, (Spouse, Family, Counsellor, Internet, Friends) know that it is important and quite normal to want answers or just someone to lean on.
Right now the first thing that is happening to you is you might be thinking and feeling a number of things.  I have made a short list of some of the more common things people feel when they get that diagnosis and it isn't limited to only Mom who might ask these questions.  Dad or spouse will probably have the same concerns but maybe not know how to address it.  Take a look at this list.  Below the list I have prepared some answers or ideas that might help to resolve some of these feelings and concerns.  I hope that my information gives you something I wasn't able to find at the time I had my diagnosis.  And commonly, because the statistic for termination is so high, I have addressed this too.  What ever your plans are, please take the time to read this before you make any rash decisions.  I guarantee much of what you think you know about Down syndrome isn't right or accurate.  I found out this myself even after years of helping the Special Olympics and Torch Run throughout my Policing career.

Here is the list:

Why?  Why did this happen to me?
What did I do wrong?
Did I cause this?
This is a really bad situation....
Will the baby live or have serious health problems?
I am not good enough to be a parent to a child with a disability....
Should I have an abortion/terminate my pregnancy?
I can't believe this is happening to us... things like this don't happen to me.
I don't know any thing about Down syndrome....
Is my (will my) child be "retarded"?
Will people treat me differently?
Will they treat my child differently?
I have other "normal" children, why would I have one with Down syndrome?
This is my first baby, will I have more with problems?
What do I do now, what happens next?
My life has changed forever hasn't it?
How do I care for this baby?
This will be a life time burden....
Can I afford a child like this?

Quite frankly, the list of questions and concerns is long, and there are probably so many more.  First off, YOU are normal to think any or all of these things and ones that aren't here.  YOU are NOT a bad person to feel this way.  If you did not think or feel any of these, that is "normal" too.  There is something we call "grieving the loss of the normal child".  In essence, we feel this way because in our eyes, having a child with any sort of disability isn't what we would consider "normal".  Having this "grieving period" is also very normal, and can last a moment, days, weeks or even years.  Some people find that they never actually get over this feeling.  The important thing to always remember is that you should never feel guilty for having these feelings or for not knowing the answers.  No one came programed to know everything about everything, just as no one would ever expect you to know how to be a parent.  There are some things in life we can only know by doing it.  No amount of reading will ever prepare you for the real thing, and this is no different.  But the good news here is, doing the research and reading about the real facts, will educate you and teach you something that you probably never knew, but had ideas that were likely not the right ones.  Give yourself the chance to find out the things that are possible to learn about before you decide what to do next.

My goal/The Goal:
I am here to shed some light and also try to answer some of these questions and concerns.  My information is personal.  It is from years of research and experience.  It is because I am involved in many areas which deal with Down syndrome.  It is because I am a parent guide who provides support to families who have just received a diagnosis of Down syndrome (designated by the genetics department at one of our hospitals).  It is because I am a mother of a child who has Down syndrome.  My promise to you is to show you the reality, tell you what we know and provide you with honest information.  I will not sugar coat the information, but I will not be negative.  
The reason why I do this:  
Some people ask me why I am an advocate.  Why do I do so much regarding Down syndrome?  I chose this life, knowing full well when I was pregnant that I was going to have a baby who had Down syndrome.  I learned about our son's diagnosis prenatally by Amniocentesis.  Though I chose to have my baby and I might have known the cold facts, there were things I didn't know, but I was prepared to learn and experience.  One thing I was not prepared for was the unconditional love I would get from my son.  Some people call me strong.  Others say I am a superhero.  I am neither of these things.  I am a plain old mom, who just happened to know before hand what was coming.  I felt many of those questions above and probably some others.  I was sad, had tears and I grieved.  But once I was ready, and accepted the fact that it was true, I decided to move ahead and prepare for my life with our son.  If I had to sum up in one sentence what I learned I would tell you this:  I learned that our son was just like any other baby.  He did all the same baby like things, and I love him the same way I would any other child.  There were some unique challenges, that I suppose anyone could have had regardless of the Down syndrome but just the same, we always overcame them.  There will probably be more challenges, just like any other child brings to their family, and we will tackle them with love, just as any other parent would with any other child.

Some facts I didn't know before hand:
  • Over 90% of people who learn that they are carrying a baby with a genetic abnormality such as Down syndrome, choose to terminate their pregnancy.
  •  There are families who specifically want babies who have Down syndrome, and the waiting lists are long.
  • Some (not all) babies who have Down syndrome have developmental delays.  Most are mild to moderate, and some (fewer) are severe.
  • People who have Down syndrome (babies, children and adults) are NOT perpetually happy as is often thought or described by stereotypes.  Everyone is unique and all have feelings; happy, sad or mad.
  • Early Intervention (therapies designed to assist with development) are helpful and do allow and help children with Down syndrome to meet their milestones.
  • Not all children who have Down syndrome have the same facial features or characteristics.  Each looks and acts unique and while there are often similarities in features, children with Down syndrome look like their parents and siblings just as any other child would.
  • The information out there today regarding Down syndrome tends to be negative, outdated and incorrect.  Much newer and more positive information is now becoming available as more people see that children with Down syndrome are much more alike then different.
  • Many doctors still do not know the newer information.  Much of the text that was taught to doctors in the past, reflect the older outdated information.  And many doctors today still assume you will terminate and often set up termination appointments which is probably why the statistic is so high.
  • Many family doctors are not taught to counsel families who receive prenatal diagnoses or provide negative information which results in many families making the decision to terminate.
  • Many adults with Down syndrome are living independent lives.  They finish school and college, have jobs, get married and some have children of their own.
  • 80% of all cases of Down syndrome happen to mothers under the age of 30 (reason explained below).

SOME ANSWERS TO THE QUESTIONS ABOVE:
  •  Why?  Why did this happen to me?
Often when we first learn about Down syndrome (or Ds for short) we wonder why it had to happen.  The truth of the matter is, 95% of the time it is a random occurrence that happens at conception.  (On a few occasions it is an inherited gene but that happens only 2-3% of the time.)  While the risk of Ds increases with the mothers age, because more of the worlds population have children between the ages of 20-30, more cases of Down syndrome fall into that age group.  The short answer of why is because it was a random event.  There really isn't a reason unless it happened because of an inherited gene and even then, the convergence of three chromosomes is still a random occurrence.  I used to personally feel that "negative things always seem to happen to me" and since the birth of my son I have realized that this occurrence is a positive.  I now think and know we are the lucky "random" one.  If you ask someone who has a child with Down syndrome why did this happen, they will probably tell you, it's because you were lucky.  And often I tell people this, Hunter (our son) was a gift I never even knew I had wanted, and I am so lucky that I have him.
  • What did I do wrong? / Did I cause this?
There is nothing you can do to cause Down syndrome to happen.  You didn't do anything wrong, or take something you shouldn't have or miss taking something you should have.  There is no medical way to make it occur, and no medical way to prevent it from happening.  When conception occurs, and a gene fails to provide only one copy of the 21st chromosome (either mother or father) one parent "sends" both copies of the 21st chromosome and when paired up with the other parents chromosome it becomes a trio instead of the pair it should have been.  There is no way to know which parent provided the "sticky" extra copy 21st chromosome which made the Trisomy.  But either way, it is no one's fault.  Sometimes the "instructions" to the chromosomes just don't happen the way they are supposed to and therefore the baby ends up with three copies of that 21st chromosome.  Having that extra copy of the 21st chromosome is what is responsible for Ds being what it is.  No one is to blame.
  • This is a really bad situation....
I guess this one thought was one I had after the "why me?" question.  This is a thought that I had before I even spent any time reading and learning about Down syndrome.  This is the thought that any person who isn't educated about Ds would have, and it's a normal typical reaction.  I often rationalize it this way.  Just like anything new and scary, people are consumed with worry.  We are all afraid of the unknown.  Fear is about the unknown.  Now that I know about "Down syndrome", I am no longer afraid of "Down syndrome".  I have fears, fears about things that are related to my child.  Normal everyday kinds of fears.  Will I be a good mother?  Will my child grow up to be a good person?  Will my child get hurt?  Will my child fall ill sometime?  But I don't fear what I used to when I first found out about Ds.  The key to lessening the fears, is to educate and understand.  Being prepared is also the key.  I suppose it's easy to say, you should think that this is a bad situation, but you would have to ask yourself, what do you mean by that statement.  What makes you think it is a bad situation?  Is it the worry about having a child that has "special needs"?  Is it the worry that you can't do the right things?  Is it the worry that you don't think you can do it?  The answer to all of those worries is you can.  Mom's have done it before us, and they will continue to do it after us.  I have said to many people in the past, in the face of adversity, we become stronger than we ever thought possible.  It is true, what doesn't kill you makes you stronger, but sometimes that saying is of little comfort when it's in the process of happening.  The short answer to this concern is, if you are interested to know what it's really like, read some blogs about families who have a child with Down syndrome.  Read the more current books about Ds.  Speak to someone who has a child with Ds.  When you read blogs or speak to a parent you wont get a statistical book, or cold hearted facts, you will get the real live unedited version.  And if you ask me or one of Hunter's family members, we will tell you, it is a wonderful situation.
  • Will the baby live or have serious health problems?
There are a lot of doctors who might tell you, having a baby with Down syndrome or carrying a baby in pregnancy could end up miscarrying.  This is not a lie.  It does happen.  And I realize it happens a lot more than people realize.  I think, because people who lose their babies do not opt to (or can't) have the pathology done, they never knew if the baby had Ds.  While the possibility of loss exists, it isn't an extraordinarily high statistic.  Most mom's carry their baby to full term and without complications.  It seems that some babies with Down syndrome want to meet their families earlier than expected though, as I have read many blogs where their babies were premature.  There are health problems that are associated with Down syndrome meaning that it tends to be more common or happen more often to people who have Down syndrome.  Some of the more usual health concerns are heart conditions (most often these are minor and do not require surgery but there are some that do not resolve on their own and do require commonly performed heart surgery.) diabetes, thyroid issues, hearing (smaller ear canals or hearing aids), vision (near sightedness), stomach issues such as reflux, and some others that are less common but are known to happen.  Some disorders that happen are not caused by Down syndrome, and are not common but seem to be more prevalent in people who have Ds like Hirschsprungs Disease and Leukemia.  Some of these health concerns sound very scary, but I suppose the reality is, these issues happen to all sorts of people, not just people with a chromosomal abnormality.  And just as any type of illness or disease happen to others, it happens in just the same way with Ds.  There are many people with Ds who don't have any health concerns, and there are some who have a lot of medical problems.  It is important to know that there are some concerns that people with Ds are predisposed to, but the care or treatment of these concerns are the same as anyone else who may have to deal with them.  I was lucky that our son did not have any serious health concerns at birth except for a hole in his heart that has spontaneously closed on its own.  He had never been ill, and had only had one minor cold in his first year of life.  I guess in comparison, we had been (and continue to be) lucky because our son's peers have had some serious colds, flus and allergies during the same time period.  To summarize, if your family is predisposed to a disease or illness, you would have to be concerned for you children for the same reason.  With Down syndrome, it is important to know that there are illnesses that exist and it is important to be cognisant of the symptoms should your child have become diagnosed with one.
  • I am not good enough to be a parent to a child with a disability....
No one person is a superhero.  No one ever is prepared to be a parent, there is no manual.  I have mentioned before that some people call me a super mom, or a special person.  I am neither of these.  I am a normal person who has normal everyday problems and concerns about life.  Even the "worst" person out there can be a good parent.  When we first plan to have a family or child, we don't do it thinking we will be perfect.  We learn as we go, everything is trial and error for the most part.  It doesn't take a special person to love someone, and it doesn't take a special person to love their child.  Disability or not, your child is your child.  Being a good parent is about caring for your child, providing for your child, and providing the necessities of life.  These are all things we do for any child, disability or not.  If a person isn't willing to do these things for any child, then I would say they couldn't be a good parent to that child.  I would say on a personal level, taking care of Hunter has been like taking care of any other child.  I guess in one way, I am lucky I have no other comparisons - he is my first child.  I don't care for him any differently than I do my step kids, or the other kids in my family.  I make sure I do the things I should.  In his first year, the only thing that was additional in the perspective of care was his early intervention meetings and some doctors appointments.  But other than that, there wasn't anything unusual with his care.  He sleeps, eats, poops and pees like any other baby.  He cries when he's cranky from being tired, he laughs when we tickle him.  He wants to explore and try new things out as he discovers them.  If these are things you do with your children, or would do - you are good enough!  If your baby was sick, or your child had diabetes, you would care for them.  A child with Down syndrome is no different in that aspect.  They require the same love as any other child would.  So, the answer to this is, if you were prepared to care and parent a "typical" child, you will do just fine.
  • Should I have an abortion/terminate my pregnancy?
I have always been a fan of "freedom of choice".  There are many reasons why medical terminations are performed.  But, while I would never judge someone else who makes the decision to terminate, I would hope that they make the effort to learn and educate themselves before they make a decision regarding termination.   No one person can answer this question for you.  Terminating a pregnancy is a personal and very emotional choice.  No one has all the answers or can predict the future.  The thing is, I do believe that most people who terminate a pregnancy that involves Down syndrome do so because they do not REALLY know what it is all about, or what life is like with a child who has Down syndrome.  There are cases where parents are not even aware that their child has any syndrome at all, because the child is truly what they consider "normal".  I wonder, if they had known that their child had Ds, what they would have done.  And if you had asked them after they learned about the child having Ds, if now they don't want their child, I am willing to bet that they would tell you "of course they want their child".  There are places all over the world where prenatal testing is just not available, and they have their children as women did all throughout life.  They do not know about Down syndrome.  They may wonder why their child has low muscle tone, or if their child was delayed they might have chalked it up to something else.  There are typical children all over the world who have serious learning delays or other learning disorders more severe then some children who have Down syndrome, but the parents would never have had or considered a termination if you asked them:  "would you have terminated your pregnancy if you knew that your normal child would end up being a 'slow learner' early in life?"or "would you give away your child if he or she had to have an amputation of a limb and subsequently couldn't walk properly?".  If you ask a parent who learned about their baby having Down syndrome after birth, weeks or months after birth if they would like to give up their child, what do you suspect they would say?  They would likely be horrified that someone asked.  They had accepted their child into their lives and hearts as their baby, and while this new label is probably frightening, they have already somewhat learned that their baby is just a baby, as any other.  I could probably write for ever on this topic, but my thoughts on this very important question is this:  If you are considering termination, please research all you can about Down syndrome BEFORE you choose to terminate.  Also, know what your reasons are why you want to, (most often the reason is - "I think the baby/child will be too intellectually disabled"  - and truthfully this is simply not the case.) and know if that particular reason is valid.  In the end, you need to be okay with your decision.  Don't do it because someone tells you, you should - It does happen.  People think that they are offering you good advice.  This is what I was told to initially by both sets of our parents who also did not know the facts.  Now they would never dream of a termination because they know the facts, the real facts.
  • I don't know any thing about Down syndrome....
There are many many resources available that talk about Down sydnrome.  The thing you have to be careful of is the old outdated negative information.  It is not accurate.  The best information about Down syndrome is from a family who has a baby/child/adult with Ds.  The next best information is through blogs.  I have a list of a few wonderful blogs out there that give you frank, real day to day and life information.  The best books about Down syndrome are listed here in my blog, down the right column under Must have books about Down syndrome.  While most times I suggest people talk to medical professionals, I have to say most of them out there are ignorant to the real facts about Down syndrome, and this is not because they choose to be, it's simply because of the old information that they were taught, which didn't favour Down syndrome in a good light.  My blog has information about Down syndrome just below my title at the top of the blog page.  The "bible" of Down syndrome information is a book called, Babies with Down syndrome 0-5 years, written by Susan Skallerup 3rd edition.  It is a wonderful book that I received from my genetics department through an anonymous donation.  Someone else out there wanted people to know the "real" facts about Ds.  I am so glad I read that book.  It educated me and gave me answers to all my questions and resolved a lot of my worries.
  • Is my (will my) child be "retarded"?
First, I need to clarify something before I go on.  The "R" word.  (Retarded).  This word is no longer used, and good riddance.  It is an incorrect and outdated term that is unacceptable these days in most places.  The medical word was the first place to use the term, and is the last place still using it.  In fact, a movement in he U.S. American senate recently banned the word from all medical literature, text and information.  Canada had removed this term a while back, but it is a slow change.  The correct word is Cognitive delay, Intellectual delay or Developmental Delay.  Down syndrome in the past was known to be the cause of intellectual delays.  The reality is, the development of children with Down syndrome is sometimes slower, but as far as intelligence, it is obvious that with inclusion into regular classrooms and Early Intervention, children are able to keep up intellectually with their peers.  Often parents describe it this way, "my child takes a bit extra time learning some things, but when s/he gets it, s/he can do whatever it is the same way as her siblings."  Some people call it slow learning, others say their child just needs the repetition to learn.  Because there are so many ways to improve the learning abilities and skills, often as a result their learning is just fine.  Just like all learning disabilities have degrees of seriousness, so does the learning aspect of Down syndrome.  it is important to rationalize this also, in life we don't ever know if something could happen to us or someone we are related to which could cause things like "brain damage" maybe resulting in a problem with the ability to learn things.  But we would persevere regardless.  I also firmly believe, the more love, care and time we spend encouraging and teaching a child who has any developmental delay, the results are exceptional.  The proof is this:  In the past, children who had disabilities or syndromes were segregated.  Because of this, and their abilities neglected, they weren't given the chance to excel.  How smart do you think you might have been, locked away in an institution, and ignored?  You wouldn't have done too well.  This is were the old information about intellectual ability comes from.  They had no other reference regarding their ability to learn, or how smart they would have been.  In history like that, it isn't too hard to see why no one who had Down syndrome attended school let alone finished it.  Today, people who have Down syndrome achieve their high school diplomas and some  go on to complete college and get a diploma.  They marry and live independently.  This isn't a fluke.  It's just they way it is when society accepts that people who have Ds aren't any different then they are.  The problem for some people with Ds who have trouble with speech, is that they are regarded differently because society has an assumption that anyone who doesn't sound clear, has a mental defect.  The reality is, this just isn't the case.
  • Will people treat me differently? / Will they treat my child differently?
The reality is unfortunately, society still has preconceived perceptions.  Do you treat people differently?  Do you have different ideas about anyone who has a disability?  Often regardless if we mean to or not, we do until we are involved in something where it becomes part of our lives.  I find that people who are parents of children with Down syndrome become advocates for Down syndrome whether they plan to or not.  They do it because they want whats best for their child, as any parent would.  This often involves making sure that no one treats them differently.  While we can't always protect our children from all cruel people, and they do exist, we learn how to deal with objectively.  I suspect that people might treat you with kid gloves at first, they won't know what to say or how to say things to you.  That will change.  When they realize that your baby is no different than any other baby, the stereotypes fall away.  Maybe the truth is, if people can't accept your child for some reason, you wont associate with them.  It is unlikely though that will happen.  We have never lost a friend or family member because our son has Down syndrome.  We have instead made a bunch of new friends.  We certainly have many new and interesting things we do because we are a family.  The label of Down syndrome does not follow us.  We only bring it up because we choose to teach and advocate.  It isn't something that is part of our lives like a ball and chain.  It is something that we talk about proudly because we are proud.  I think because we are so positive about Down syndrome, others take our lead.  I know that if we were sad and couldn't come to terms with Down syndrome, it would probably loom over our heads and people would whisper, "poor family".  But they don't because we don't feel that way.  We know what our son is capable of, and that is everything and anything he wants.  We clap every time he does something new, and we praise him just as we would any other child.  When he does something he isn't supposed to, we react the same as we would with our other children.  Nothing changes because of Down syndrome.  The only thing we do is make sure that our child gets everything he needs to excel.  And truly that is no different that what you would expect a parent to do for any other child.  If he needs extra attention to learn something, he will get it.  And if that means that he needs a remedial class, he will have it.  I don't find that a stretch from a typically developing child.  When I was a teenager, I struggled in high school with math, and my parents got me a tutor.  There isn't much that is different there in terms of needing extra special help.  The thing is, I still find it funny that people assume it's a special need when it is for a child with Down syndrome as opposed to a typical child!  That is just a result of old stereotypes.
  • I have other "normal" children, why would I have one with Down syndrome? / This is my first baby, will I have more with problems?
The answer to this question is sort of answered in a previous question.  The short answer for this question is:  Because most often Down syndrome is random (95% of the time), it means that it matters not if you have typical children or not, or before or after.  Your child who has Down syndrome is a result of a random convergence.  It doesn't mean you will have another child who has Ds, and your risk for Ds is always initially assessed by the mothers maternal age.  If you have a baby with Ds, some doctors say that for future pregnancies your risk will remain at 1% there after to have other children with Down syndrome.  Others say your risk is whatever the Genetic chart deems your risk to be for your age.  Which would mean if you had a child with Down sydnrome when you were 20, your risk at 35 would be 1 in 385.  If you have a genetic translocation (ie. Robersonian Translocation) of Down syndrome, you have a different risk factor.  Medically it is explained this way:  "In theory, there is a 25% chance that the gametes (eggs or sperm) that the mom or dad produces - will have a normal chromosome complement, a 25% chance that the egg or sperm will have the balanced translocation (like the parent) and a 50% chance that the egg or sperm would produce an unbalanced chromosome complement."  In order to know for sure if you will have the increased possibility of having another child with Down syndrome, you would have to have a genetics analysis on yourself (a karyotype) or your baby with Ds to see if their Down syndrome is the random (nondisjunction) or Translocation (Robersonian Translocation) Down syndrome.
  • What do I do now, what happens next?
    My life has changed forever hasn't it?
    How do I care for this baby?
    This will be a life time burden....
    Can I afford a child like this?
 I grouped these last few questions all together because they seem to all relate to the future.  The future is always unknown but one thing that is for sure is everything changes.  When I asked some of these questions to my genetics counsellor, she told me this.  "Go home and prepare for your baby".  I asked her what special things I needed to do.  She plainly said, "nothing".  I was really confused.  I had made the decision to take this Down syndrome thing head on, and I had thought there was going to be so much to do.  There was nothing to do.  I wanted her to tell me that I had to organize, that I had to see special doctors, something - anything.  But the truth was, I didn't need to do any of these things.  In the end, I begged my OB/GYN to refer me to a high risk doctor, and I asked her to send me for high level ultrasounds every four weeks.  I guess, most of the doctors thought I was crazy or obsessing.  And maybe I was for a bit.  It didn't seem "normal" to me to just sit back and not do anything "medical" for the next six months.  You can ask for these things, and likely your doctor will agree, because they don't have tons of experience dealing with a pregnancy that also is UNcomplicated with Down syndrome.  Often to the medical world, out side of the specialist who deal with Ds, Down syndrome is a unknown, and therefore could be treated as high risk.  Ultimately, unless there are other risks in your pregnancy, the is no new additional risk.  More often than not, going for repetitive ultrasounds, will only serve to heighten your worry.  You may start to obsess about things that normally if you couldn't have these numerous ultrasounds (after diagnosis) you wouldn't be able to do.  Understandably, if you are in the early testing stages of prenatal testing, you might have more ultrasounds then a regular pregnancy would.  In most "typical" pregnancies, a mom is lucky if she gets three ultrasounds though her entire pregnancy unless she opts to have and pay for 3D/4D ultrasounds.  I had countless ultrasounds.  I was worried about my developing son's anatomy.  And at the end and at birth, there were no health issues found.  

Does your life change forever?  Of course it does - you have a baby.  No ones life ever stays the same when they have a baby, or even have another baby.  Every time you add a life to your family, your life will change.  If you are like me, the honest reality is, your life will change for the better because of Down syndrome.  I have been humbled by this syndrome.  I am a much more sensitive person, (even though I was a pretty educated and sensitive person before my son was born) and I have changed a few things in my life.  Primarily, my language has changed.  I don't think of the word "normal" the same way any longer.  I have learned that to use the word "normal" is very subjective.  Whether or not it bothers me, I now realize it bothers others.  Who is to say that some child is "normal" and others are not.  I have learned that the better way to address this is to use the word "typical".  I know that my son is "normal" to both my husband and I as well as my family.  I now educate people who use the word "retard/retarded".  When people used to say this word before, and on occasion I used it never meaning it negatively, but either way, the word is a negative one, and I know that some day, someone may use that word and it will probably hurt my son's feelings.  I will not be a hypocrite when that time comes.  The other things that have changed for me, are the realization of what is truly important.

How do you care for this baby?  If I told you to care for your baby who has Down syndrome the same way you would care for any other child, would you believe me?  The only exception to this is if your baby has some other complication for example being premature.  And like any other baby that is premature, there is always a chance that their lungs are not fully developed or mature enough.  If this is your reality, your baby will be treated the same as if it were any other baby.  Remember, most new parents who learn about their baby having Down syndrome after birth have no idea until they are told it is a possibility.  For some, it could be days later, weeks or even months later.  The care of their newborn was no different.  An interesting point for me to pass onto you is that when my son was born, four doctors (the OB who delivered him, the attending neonatologist from the NICU, the pediatrician and the other attending surgeon) who were told in advance that our son had Down syndrome, told us that he did not.  They argued with me, even disregarded and did not believed the medical paperwork from my Amniocentesis.  They even told me I needed to have his karyotype re-done again, to have his chromosomes analyzed now that he had been born.  Foolishly I did, knowing full well that my results were right.  And as angry as I was that I put our newborn through a blood test, the good thing about having it done after his birth (in hindsight), did confirm his Trisomy21, but it also told us that his Down syndrome was not the Robersonian Translocation, and that it wasn't a Mosaic form either.  It was the regular nondisjunction Trisomy21.  Some babies with Down syndrome do have poor muscle tone called hypotonia.  Most times the hypotonia is not so severe that the baby can not nurse.  But there have been some cases where nursing was difficult and some of those babies did much better with bottle feedings.  Either way, so long as your baby gains weight, either method is fine.  In serious cases, (not the normal situation) some babies have been fed with a NG (nasogastric or feeding) tube.  Often typical babies who have surgeries at birth, or very premature babies are given NG tubes to feed them.  This may sound scary but any baby can have this need.  Often in the NICU (Neonatal Intensive Care Unit) NG tubes are a normal piece of medical equipment used on baby - Down syndrome or not.  If this happens to your newborn, the hospital is very good at explaining everything about it, and in some situations even showing you (if you want your baby home with you sooner) how to use it so that your newborn can come home earlier.  Again, these are the more non-typical situations that occur.

Will this be a life time burden?  I am not sure how to answer this.  The reason I say that is because I have never thought of any child, disability or not, a burden.  Since the care of your baby and child in almost all cases, is like any other child, the only way I can really answer this is No.  The first thing that comes to mind for me to answer this question is to explain something that I often hear from my family and friends.  Because we advocate for and about Down syndrome, everyone that we know and meet know that our son has Down syndrome.  We don't tell them because we want special attention or pity, we tell them because we want them to realize that our son is just like any other boy.  And when people find out, they are dumbfounded.  (Not in a negative way.)  They just can't believe that he has Down syndrome.  We hear things like, "it must be mild" and "he must be a super genius then" or "maybe he's one of the luckier ones".  Frankly the comments are all different but the all imply the same thing.  How could our son, who does everything, and doesn't seem to be challenged in anyway, have Down syndrome?  I guess I have to laugh.  It isn't that they are being nice, and it isn't that they don't live with us and just don't know him (two of the comments come from my parents who lives with us) the fact is, that is just the way it is.  "Normal".  I always explain to people who suggest or think that our son is out of the ordinary, that this is what Down syndrome is.  We didn't do anything extra, we didn't pay for super training, we just love him and encourage him the way parents are supposed to.  Perhaps they see that it takes our son a bit longer to master somethings like walking maybe in comparison to some other child and think it is because of his muscle tone.  And yet, there are others who tell us that our son crawled and pulled himself up long before their child did.  I tell them in truth, that our son has always met his milestones on time (according to charts for typically developing children) and I am sure there will be things that may take him longer.  It's important not to compare.  The fact is, there are babies (typical) who don't walk until they are close to 20 months or more like one of my cousins.  And as an interesting note about him, He is a doctor.  So that tells you that delays with development are "normal" and affect babies and children no matter what their chromosomal arrangement is.  Every child is unique.  Every child does things when they are ready to, Down syndrome or not.   
There isn't much in the way of additional things that you have to do to care for some one with Down sydnrome.  Short of having any complications or medical issues that could happen to baby, life is as it would be with a "typical" child.  In the early years (depending on the services your country or state provides) you will/may have some Early Intervention therapies designed to assist your baby/child with development.  Because muscles can be affected by hypotonia, there are physical therapists who will give you and your baby/child specific exercises to help strengthen and teach.  Because hearing can be affected, speech therapists can help work with a child to promote better speech if it is affected as a result.  In many places, these therapies are conducted in home.  I did not know this when I was pregnant.  I had assumed that I would be taking my son to these therapies.  There is always the option that if you have the resources you can have your child go to additional therapies that are available.  It is completely up to you.  Which, then runs into the last question in my list,
Can I afford a child like this?  How often are we told, having a baby costs a lot of money.  Using a baby calculator on a website, with all the bells and whistles I got a subtotal of $13,825.00 for the first year.  That sounds absolutely ridiculous but, when adding up all the things that you need to buy if you don't have a baby shower or items given to you from your family or friends, it can certainly cost that much.  It also includes day care for six months.  From formula and diapers to baby furniture the costs go up and up.  Luckily, much of that total is one time expenses that do not have to be repeated yearly.  The important thing to note is, I have not purchased things that I would not have bought for any other baby.  Everything I bought for our son, are things that you would purchase regardless of the Down syndrome.  I have bought things that I thought would help him with his dexterity or motor skills, but these toys are toys parents generally buy to get their children motivated to do the same.  The sides of boxes of learning toys made under the name "Baby Einstein" or "Infantino" are all designed to promote early learning.  No where on those boxes does it suggest that they were designed for babies or children with Intellectual delays.  The point is, educational toys are out there regardless of age, gender or ability/disability.  Everyone wants their child to be smarter, better, more educated.  It is no different when you have a baby with Ds.  If you think that you shouldn't or wont buy these types of items because your baby wont or can't use them, think again.  My son has used everything from his Jumperoo, and Exersaucer to his stacking cups and roll-alongs.  He also plays with cardboard boxes like all children.  

Short Summary:
When you look at my son, who do you see?  Do you see my son first or do you see the Down syndrome first?  That is the question you will have to ask yourself when you think of your baby.  In the beginning it is hard to separate the difference, because you know it's there.  It may feel like it will always be there, and that you and your child will always be "affected" by the label.  You might feel haunted by it or you may be just fine with it.  It is an emotional transition that at some point you will make.  You might make it right away, or it may take nearly a lifetime.  And there are times where it might resurface because of something that is said or done and those are typical hurdles.  But when you make that transition, you might not even realize it.  But at some point you will stop referring to your baby/child as having Down syndrome and he or she will just be your child "so and so".  That is the day of acceptance.  And the times after that when you do tell people, it will be because you want to do what I am doing here.  Educating others or Advocating for Down syndrome.

If you have any other questions or concerns, I have a "Questions" page (located below the title banner called "Do you have questions about down syndrome?  Click here to ask" for those who wish to ask about other things.  No question is silly or not important enough to ask.  Every question will be treated with respect.  Rude or negative comments will not be tolerated.  The questions page also allows anyone to post a question through my personal email should there be something that you would rather not post openly.

Sincerely,
Sandi, mommy to Hunter and loving wife to John.
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