Look who’s sittin pretty!
Statistically speaking; 90% of all people who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancy. While I consider myself pro-choice. I firmly believe that Down syndrome is not a reason for abortion. Some of the worst articles and writings out there talk about how the only people in this day and age that would give birth to a child with Down syndrome are religious masochist. I can promise you I am not.
The reasoning behind this seems to be that a child with Down syndrome will only suffer in life. Bear in mind this view can only be based on the historical context and precedent of placing children with Down syndrome in institutions away from their families, communities and appropriate medical care. This is not what life looks like now. Right now the biggest hurdle a person and family touched by Ds will face in life is overcoming the ignorance and hatred of strangers. I wouldn’t even call this a challenge- a challenge is something every single human being on this planet works with to learn to do any single task. It is a challenge for any new baby to learn to sit, to roll, to walk and to talk. As parents and teachers we get to know our children and their learning style and we apply that knowledge to help each and every one of our children be as successful as they possibly can be. We champion our children. And I can promise you your child with Down syndrome will be no different in that regard.
Yes there will be doctor appointments and therapies. That is most likely a given. But it is a given opportunity. We are so fortunate that in this day and age that technology and advances in science and medicine can help us all live better lives. There are people who will help you figure out what to do to help your child succeed. How can that possibly be a bad thing?
When our oldest daughter Zuzu was in her first year we had doctor appointment after doctor appointment. We spend the second six months of her life with every other week visits to the pediatrician to follow up on her ear infections and the subsequent follies that follow a dose of antibiotics in a young system. It was a hard year for all of us. But the fact that we were frequent visitors to her caring doctor certainly never gave me pause as to her worth as a human being. Our Zuzu is a spirited child. We are constantly trying to figure out what is the kindest way to explain the world and societies expectations that she not yell and throw her food during a meal out at a restaurant. The best way for her to learn this? By going out to eat and practicing it. The fact that we have to explain things to our 3 year old has never given me pause as to her worth as a human being.
Will the way we have to explain things and teach our Quail be different then how we explain things and teach things to our Zuzu? Yes- most likely. Is it because she has Down syndrome? I don’t know. Maybe, maybe not. Maybe it is because she is a unique human being, with needs that are different then her sisters. Are my needs different then my own sisters? Absolutely. Does that make me less of a human being? Absolutely not.
I read medical records for a living. I read those of children and adults alike. I see that a large population of our world faces challenges in their health and well being. How often is that because these people have Down syndrome? Not very. People all around us have heart, back, psychological, IQ, behavioral, breathing and digestive issues. The majority of the time they do not have Down syndrome. Yet no one questions the value of these individual’s worth in society.
Nowadays a typical person that has Down syndrome is likely to be affected by a group of specific medical issues. But they are just that- medical issues. They can be medically managed.
Thyroid disorder? Control it with diet, exercise and thyroid medication. Does the general population also face this issue? Absolutely.
Vision difficulties? Control it with glasses, vision therapy or laser surgery. Does the general population also face this issue? Absolutely.
Hearing difficulties? Control it with hearing aides, regular check ups and treatment of fluid in the ears and ear infections. Does the general population also face this issue? Absolutely.
Learning difficulties? Control it with a good diet, exposure to a stimulating environment, frequent opportunities for learning and early intervention which is a county enacted; government sponsored program. Does the general population also face this issue? Absolutely. Let me just say that you would be surprised to find out the actual IQ of most people you interact with on a daily basis.
Heart issues? Regular check ups, medication and treatment from a pediatric cardiologist. Does the general population face this issue? Absolutely.
It is impossible to know prenatally what the future of any child will be. We hope that our children will not struggle in life. We hope that they will be healthy, happy and successful in life. What is the definition of a successful life? Well that varies by person. Some people find meaning in making millions of dollars. Some people find meaning in being famous. Some people find meaning in helping others. Will your child find meaning in one of these? There is no way to know prenatally.
Will your child face challenges in life? Yes, we all do. Are there people out there to help you figure out how to best support your child with or without Down syndrome? Yes, we all will.
Will your child suffer because they may need therapy to achieve their developmental milestones? Well take a look at the pictures above. This is the Quail doing her physical therapy at home. If this looks like suffering to someone- well then I’m sorry for them and the life they lead.
Will your child with Down syndrome achieve their developmental milestones? Yes. Yes they will. Will it be later than the average child? Maybe. Is there a way to know that prenatally? No. No there is not. The books you read give you an average of when a child will achieve a particular milestone. That means some will do it earlier and some will do it later. Will your child with Down syndrome find happiness in their life? Maybe. Will your child without Down syndrome find happiness in their life? Maybe. We certainly hope so for all of our children. Will your child with Down syndrome never live on their own? I don’t know- maybe, maybe not. The world of opportunities open to a person with a disability is changing every day. Will your child without Down syndrome ever live on their own? I don’t know- maybe, maybe not. It is impossible to know this prenatally as well.
If you are bothered that the government may help provide services to ensure the future of your child. Well let me say there are plenty of services that the government provides that I would prefer they ask me my opinion on how that money is spent as well. Do I think that the government spending money on the future of all children is important? Yes, yes I do and that is one of the main reasons I pay my taxes. Are there people out there that don’t have Down syndrome and still relay on government funding? Well if you drive on public roads, if you use the government courts, if you park on a public street, if you use electricity, if you take a FDA approved medication, if you go or went to public school, if you enjoy a publicly regulated sewage system, if you enjoy the freedom to speak your mind and live your life. Then yes- the government is spending money on you as well.
Will my child that has Down syndrome need government assistance when she grows up in order to live? I don’t know. Am I doing all I can to make her a strong, capable independent person? Yes, yes I am. Is my child that doesn’t have Down syndrome going to be in need of government assistance when she grows up in order to live? I don’t know. Am I doing all I can to make her a strong, capable independent person? Yes, yes I am. Am I going to be in need of government assistance someday myself- either due to retirement or a future injury? I certainly hope not. But its impossible to know. Am I doing all I can to make myself a strong, capable independent person throughout my life? Yes. Yes, I am.
Will your child with Down syndrome know you? Yes. Absolutely yes.
Will your child with Down syndrome learn and grow? Yes. Absolutely yes.
Will there be joy in your life with a child with Down syndrome. Yes. Absolutely yes.
Now if you’ll excuse me- I need to go help my 3 year old who does not have Down syndrome poop in the potty. She is in the process of being potty-trained. In the meantime- my 7.5 month old, who does happen to have Down syndrome is busy feeding herself her morning bottle.
The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The “s” in syndrome is not capitalized (syndrome).
An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.
Encourage people to use people-first language. “The person with Down syndrome”, not “the Down syndrome person.” A person with Down syndrome is not “a Downs”.
Words can create barriers. Recognize that a child is “a child with Down syndrome,” or that an adult is “an adult with Down syndrome.” Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.
It is important to use the correct terminology. A person “has” Down syndrome, rather than “suffers from,” “is a victim of,” “is diseased with” or “afflicted by.”
Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that “all people with Down syndrome are the same.”
Here are some basic guidelines for using People First Language:
1. Put people first, not their disability* A “person with a disability”, not a “disabled person”* A “child with autism”, not an “autistic child”
2. Use emotionally neutral expressions* A person “with” cerebral palsy, not “afflicted with” cerebral palsy* An individual who had a stroke, not a stroke “victim”* A person “has” Down syndrome, not “suffers from” Down syndrome
3. Emphasize abilities, not limitations* A person “uses a wheelchair”, not “wheelchair-bound”* A child “receives special education services”, not “in special ed”
4. Adopt preferred language* A “cognitive disability” or “intellectual disability” is preferred over “mentally retarded”* “Typically developing” or “typical” is preferred over “normal”* “Accessible” parking space or hotel room is preferred over “handicapped”
Guidelines from the National Down Syndrome Congress