My Best YES. I Chose Down Syndrome Because…

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The simplest of phrases or statements are some of the most elaborate because the rationale behind them is extensive. My best “YES” is no different. My rationale in choosing Down Syndrome is extensive, elaborate, and beautiful. Because Down Syndrome is beautiful and it always has been. But, I had to seek this truth out and look within myself. Sometimes seeking the truth and self-reflection is far more fearsome than the decisions we make because knowledge implores us to examine and change ourselves for the better. However, change and how it betters ourselves is only as valuable as the knowledge we seek therefore, the knowledge we seek must be well-rounded. Meaning, we must be able to examine within ourselves not only the positive things about ourselves that we like, but things that once were positive but now have become negative, in light of this well-rounded knowledge. Grappling with how you feel after this change is heart-retching because not only does it transform us but we have to sort out our guilt for how we thought or acted in the past.

Before I had my son who has Down Syndrome, I would like to say that I knew and understood what unconditional love is. I would have described it as love for yourself and your children no matter what they do or who they become.

When my son with Down Syndrome was born, a new world to what unconditional love opened up to me. One that on some level, I must have known existed. One that I think I had, but had not really sat down to ponder or verbally acknowledge it aloud. Through my son, I had such an enormous amount of unconditional love for him, like I did for my other children. However, there was something else there too. An indescribable love for him and the lives of others whom he touched. A love for other children who are just like him, a child with Down Syndrome. Then a love for people of all ages with Down Syndrome. Then a love for children with disabilities. Then a love for people with disabilities. I learned unconditional love is a love for community and society as a whole.

For you see, we can live through life classifying people on a spectrum or in a group, and say you are a person with condition A or a person with condition B. However, the truth of the matter is that these persons with conditions cannot be placed in a box to define who and what they can achieve. Often people will have condition A and B with a little C, but A is more pronounced than B and C, so we will just say this person predominantly embodies condition A . However complex, the truth is that there not exists a condition where a person fits neatly into one box. Had I not had my child with Down Syndrome, I don’t think I could have truly experienced what having love for a community and society as a whole is. I have learned a lot through loving him.

Reflecting back on my experience of finding out that my child has Down Syndrome, it was one of the hardest things I went through. For you see, at the time I had three children who depended on me greatly. One of my children had challenging behaviours because he found learning to be difficult. It was and is a battle that I deal with to this day. I went through a lot of pain with the fuel of love that only a mother has, to ensure that my child received the care and acceptance that everyone deserves.

When I found out my fourth child has Down Syndrome, I had many rushing thoughts and I was scared. I was scared because I had the needs of my prior children to consider in addition to my own. I went through many emotions: fear of the unknown, anger as to why this “happened” to my child, and sadness because unlike my other children, this baby would not experience the joy of having their own babies. Everything that I had dreamed of for my other children would not be possible for this child. He could have some of the dreams but not all of it.

If there ever was a situation to be had where you meet your values and ethics head-on, this was it. I had to examine the values and ethics that I practice. Which ones are most important to me? Why are they important? Are they valid rational reasons? Just like theory is to practice, hypothesizing how you would react and what you would do in a situation where your child is diagnosed with Down Syndrome is completely different compared with what you actually do in reality.

Prior to having children and being a Nurse, I had worked with children who had a variety of special needs. So, I had some familiarity of what to expect. But in this situation, I had fear. Fear that my child with Down Syndrome would be more behaviorally difficult to manage. Fear that I would not be able to provide everything that they need emotionally and physically. Fear of people I knew and did not know, treating me or my child poorly or alienating me or pitying me.

I had anger. Is there a God? Why would God remove functioning characteristics from my child? Why did my child had to suffer?

I had sadness. My baby can’t have babies of their own. They won’t experience raising their own family. My baby will suffer. My baby will have a difficult life.

These thoughts ruminate in the minds of anyone that receives any prenatal diagnosis that isn’t “typically developing” or “developing as expected”. To have these thoughts are normal in this kind of situation. To have these thoughts are human. Feeling guilty about having these thoughts are also to be expected.

I believe in order to get answers to your questions, it is best to retrieve responses from the best resources available demonstrated by the highest quality of evidence. I met with many health professionals because I wanted to hear what I had read directly from “the horse’s mouth”. I learned that individuals with Down Syndrome often need more stimulation because they are quite content to sit in one spot, watching the world around them. I also learned, I entered a world of risks and was presented with an array of percentages, that could sometimes resemble the risks and odds in gambling. I realized after many conversations of numbers and risks that I needed to take a step back from the medical perspective and seek out a variety of perspectives.

I needed to seek out the lived experiences of others who had children with Down Syndrome. My questions could be best answered by parents who already have “walked in my shoes”. Most of the answers to my questions were not readily available at my clinic and ultrasound appointments. Questions such as what is life like for someone with Down Syndrome is best answered by a person who lives with someone who has Down Syndrome, not by someone who has read about it. You have to seek out this information, not only the one that is laid out in front of you. This information is largely subjective and could be viewed as the health professional influencing your decision. The tragedy of this, is not giving information about the lived experiences of others in regards to Down Syndrome unintentionally may influence the decision of someone to say NO when they may have otherwise have said YES, had they had more information.

Once I sought out information from parents who have a child with Down Syndrome, I learned that I am more than capable to have such a child.

I learned that I have much strength in me to care for another child with challenges.

I learned I cannot live my life in fear of what other people think of me. I have my own truth and I have to live it.

I learned that conception is a random occurrence where there are prescribed instructions but that they do not always follow a particular sequence. Thus, God did not single me out to have a child with Down Syndrome anymore than God did not single me out to have three healthy pregnancies prior and to never have experienced the grief and sadness of a miscarriage. Special children are not born to special parents. Special children are born to parents who see themselves as capable of doing so. It may come as a surprise to some that there are many capable parents waiting to adopt a child with Down Syndrome. I know, because it was a surprise to me when I was told by a pediatric physician.

I learned that people do not suffer from Down Syndrome anymore than I may suffer from having fine hair.

I learned that people with Down Syndrome have lived to and beyond 60 years of age and live quite independent lives. The notion that my child would suffer as having to live dependently was countered by many living examples of independent individuals with Down Syndrome.

I learned Down Syndrome is not life-threatening. In many ways, I’d come to know Down Syndrome as life-enhancing.

I learned that if my sole reason for not having this child is because they themselves cannot have children or could not do some things exactly like my other children or would do the same things as my other children but on a delayed timeline; then my reason to not proceed was not valid. There are countless individuals who choose not to have children or do certain things differently, and they do not suffer daily because of it.

The more I learned from everyone, the more I refined my values and ethics and was able to set them apart from others simply because I was more knowledgeable.

What are my values and ethics? I did not discuss them because they are mine, not yours. They are mine to keep and mine to share with whoever asks me, should I decide to. Your choice is not rooted in my choice. My choosing Down Syndrome is rooted in facts and grounded by my beliefs. Most importantly, beliefs I practiced and acted on. It is a choice I welcomed irrespective of the outcome of being positive or negative. I made a choice where I knew I could like the rest of my life without regret. I replaced my fear with inquisitiveness, my anger with faith, and my sadness with acceptance. Choosing to have any child really is a leap of faith no matter if your child has any perceived complications or not. No one can predict the future. A healthy child born may not have a bright future and may live a miserable, sad, and lonely life despite having very caring and loving parents. A child may be born with a disability and may have a bright future full of love, happiness, and connect positively with many people. (A truth and reality I have learned and witnessed working as a Nurse).

My son with Down Syndrome was and is the best YES, I ever made.

For there to be more YES’ made in this world, we need more people to interact and communicate with members of their community who are disabled, physically and cognitively. This is how value, kindness, and empathy is built. This is how inclusion is created and built. Inclusion matters.

Disclaimer: All the information found on this website is just that, for informational purposes only.  Nothing on this site is meant to replace the services or advice from any regulated health care body or provider in your province/state/Country. You should not rely on this website as replacement for health services or care. You should instead contact your nearest and available licensed physician or health care provider for all matters pertaining to your health and well-being. This website is not intended to create a nurse-patient relationship and any questions or concerns should be addressed by your licensed physician or health care provider. You agree that you shall not make any health or medical related decisions based in whole or in part of anything contained on this website. 

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The Challenges and Joys of Raising a Child with Down Syndrome and Cerebral Palsy

FacebooktwitterredditpinterestlinkedinmailHaving a child born with disabilities can be very unnerving for parents. There are definite challenges and obstacles to overcome that parents of children without disabilities don’t face, but there are joys too. Every child is special, but those with one or both of two common disabilities—Down Syndrome and Cerebral Palsy—face unique challenges.

 

What is Cerebral Palsy?

 

Cerebral palsy is the most common physical disability of childhood and it is caused by brain damage that usually occurs in the womb, during childbirth, within the first 28 days of a child’s life, or within the first year of a child’s life. The brain damage, which may result from number of factors, causes disabilities largely in a child’s muscles and in how he or she moves. It may cause stiff muscles, spastic muscles, increased or decreased muscle tone, and varying degrees of difficulty walking. Cerebral palsy is lifelong, but not progressive. It can be treated but not cured and the amount of disability it causes varies greatly from one child to the next.

 

Some Challenges of Cerebral Palsy are Similar to Those of Down Syndrome

It is possible that a child will be born with both of these conditions, with the extra chromosome that causes Down Syndrome and with accidental brain damage that causes Cerebral Palsy. For parents this means additional challenges, but many of them are similar so it is not as difficult as it may seem at first.

 

For instance, both conditions require lifelong treatments, so parents need to be prepared to make a long-term plan for care that is updated year after year. Both conditions also cause some degree of physical disability and delays in development, so learning how to use assistive equipment and going through physical therapy will help with both conditions.

 

Down syndrome causes intellectual disability, but Cerebral Palsy may cause this as well. A child with Cerebral Palsy may also struggle with learning disabilities or behavioral disorders that make learning more difficult. For both conditions, parents need plan for early educational interventions that will make it easier for their child to learn and be successful in school.

 

A child with either or both conditions is also likely to face social challenges. It can be difficult to fit in with peers when a child looks and acts differently. Parents can face this challenge head-on by getting their child involved in social activities early, helping them to learn social skills and make friends. Early recreational activities also help with socialization and boost self-confidence.

 

Each Condition Has Unique Challenges

 

While there are many similarities and overlapping challenges, a child with one condition or the other will also have unique issues. Down syndrome, for instance, may cause certain health problems, like heart conditions, eye conditions, ear infections, and sleep apnea. A child may have one or more of these conditions.

 

Cerebral Palsy is particularly challenging in that it can cause a huge range of complications and is less predictable. Possible complications include vision loss, hearing loss, seizures, difficulty swallowing, inability to walk, joint pain, gastrointestinal issues, and much more. A big challenge of Cerebral Palsy is identifying and addressing each complication.

 

Another unique aspect of Cerebral Palsy is that it may be difficult to determine the exact contributing cause. Most common causes are congenital, meaning it occurs before or during birth. Acquired Cerebral Palsy is less common and may be caused by an infection or brain injury during birth. If this is the case, it usually presents itself within the first 28 days of life. It may be possible that a medical mistake occurred. This medical negligence adds an extra layer of frustration for parents, who then must decide, if applicable, if it is worthwhile to spend time and money in a legal fight or dispute against the responsible medical professional.

Having a child born with one or both of these conditions presents parents with a lot of challenges, but there are also great joys in seeing a child grow and develop to overcome them. To watch a child succeed and live a happy life in spite of disabilities is a great reward.

*Co-written by an anonymous volunteer blogger

Disclaimer: All the information found on this website is just that, for informational purposes only.  Nothing on this site is meant to replace the services or advice from any regulated health care body or provider in your province/state/Country. You should not rely on this website as replacement for health services or care. You should instead contact your nearest and available licensed physician or health care provider for all matters pertaining to your health and well-being. This website is not intended to create a nurse-patient relationship and any questions or concerns should be addressed by your licensed physician or health care provider. You agree that you shall not make any health or medical related decisions based in whole or in part of anything contained on this website. 

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Clinical Manifestations of Down Syndrome Series: Head

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Features of the Head As Seen in Down Syndrome

There are certain features of the head that are seen in people that have Down Syndrome. These features vary in people with Down Syndrome. Some people with Down Syndrome will have all of these features and some will have a few of these features.

Having these features does not mean that someone has Down Syndrome. These features can be present in other medical conditions that are not related to Down Syndrome.

However, if a medical professional sees these features in combination, they may suspect a diagnosis of Down Syndrome.

The objective of this series is to bring awareness that many of the features seen in Down Syndrome, are also seen in individuals without Down Syndrome. These features on their own or as a whole do not define individuals who have them, irrespective of whether you have Down Syndrome or not. What makes these features significant is that they are different from the general population, that’s all. How individuals are treated with these features are more of a perspective problem of society than an individual problem.

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Clinical Manifestations of Down Syndrome Series: Introduction

Citation of picture in a textbook showing text "Down Syndrome".

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If one was to conduct an internet search to find out what are the clinical manifestations of Down Syndrome, it would turn up many sites describing the physical features of Down Syndrome. Typically, you would see the features that are characteristic of a diagnosis of Down Syndrome.

People assume that just because a person is physically different than the typical or normal person, that the difference seen, is abnormal in nature. Further, that this abnormal feature in nature must be incompatible with life or cause difficulty in life. So much so, that when individuals hear that their child has a diagnosis of Down Syndrome, little thought is given to what does that difference actually mean because people are still grasping with the diagnosis itself.

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Social Media Hashtags for #DownSyndrome

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During pregnancy, when I found out that my child would have Down Syndrome, it was unexpected to say the least. A way I tend to cope with things that are out of my control is to research a lot about it. So, that is what I did. I took to the internet and tried to find all the credible resources I could, that would tell me all about the medical issues and what life would be with a child who has Down Syndrome. I could not find much. I found a few videos and some articles and that’s it.

At the time, I did not know about website design or how to use social media. The only social media I used at the time was Facebook and the use of hastags was a strange concept to me.  I look back, and I wish I knew more about social media and the use of hastags. Maybe then I would have found all the inspiring, empowering, lovely photos of other families with children who have Down Syndrome. Further, what I would have found was hope and see that everything was going to be okay. Continue reading “Social Media Hashtags for #DownSyndrome”Facebooktwitterredditpinterestlinkedinmail

Bystanders Are Key To You Surviving a Heart Attack

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CPR MUST Start Before the Ambulance Arrives

If you are out shopping, dining, touring, visiting, walking, or simply leisurely enjoying yourself in public, you are likely going to cross paths of many strangers. Strangers that you normally wouldn’t give any attention to or care about. Your main goal is to go out and have fun. However, if you suddenly find yourself having chest pains and collapse because you are having a heart attack, your very survival depends on those very strangers that you passed.

A heart attack is when the flow of blood to a section to the heart becomes blocked and the heart can’t get oxygen. If blood flow is not restored quickly, that section of the heart begins to die. The level of damage depends on how long blood supply is cut off. The result can be mild damage, or it could lead to severe, lifelong problems.-Heart & Stroke Foundation

Resuscitation and survival depends on starting cardiopulmonary resusciatation (CPR) immediately without delay

The Rule of 3

3 Weeks

The length of time adults can survive without food

3 Days

The length of time adults can survive without water

3 Minutes

The length of time adults can survive without oxygen

  • Fact: Ambulances take longer than 3 minutes to arrive at the scene. In Edmonton AB, the response time is 13-18 minutes
  • Fact: Cardiopulmonary Resuscitation (CPR) must be started right away
  • Fact: If CPR is started right away, your chance of surviving doubles and may even triple
  • Your chance of surviving without bystanders intervening is 3%

Death is almost certain without bystanders intervening and giving CPR.

Any CPR is better than no CPR. Chest compressions and allowing the chest to recoil between each compression is crucial. If you have to choose one, choose compressions over giving breaths

  • Fear of Injurying the person.
  • Concern for providing poor or incorrect CPR.
  • Inability or lack of knowledge of how to perform CPR.
  • Legal liability.
  • Risk of infectious disease transmission.

Reality

Public Automated External Defrbrillators (AEDs) electronically tells the Bystander what to do and how to perform CPR

Have no fear if you have never taken a CPR course or don't even know the first step of CPR. All you need to do is find the AED where you are, open it, and press the power-on button. Then sit back, listen, and follow the instructions.

Adult Cardiopulmonary Resuscitation (CPR) in a nutshell

  1. Press firmly down in the center of the chest.
  2. Allow the chest to fully recoil.
  3. Repeat steps 1-2, until the ambulance arrives
  4. Aim for approximately 100-120 compressions per minute. An easy way to remember is to compress to the tempo of the song “Stayin’ Alive” by the Bee Gees.
  5. Compress to 1/3 the depth of the chest or 5 cm. Remember: If the chest pops, don’t stop. “If you hit the spine, that’s not so fine.”-Jason from Saving Grace Medical Academy Ltd.

Disclaimer: All the information found on this website is just that, for informational purposes only.  Nothing on this site is meant to replace the services or advice from any regulated health care body or provider in your province/state/Country. You should not rely on this website as replacement for health services or care. You should instead contact your nearest and available licensed physician or health care provider for all matters pertaining to your health and well-being. This website is not intended to create a nurse-patient relationship and any questions or concerns should be addressed by your licensed physician or health care provider. You agree that you shall not make any health or medical related decisions based in whole or in part of anything contained on this website.

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Patient-Centered Care Part 2 of 2: Being Your Own Health Care Manager

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Patient-Centered Care Part 2 of 2: Being Your Own Health Care Manager

“How can I be the best Health Care Manager for myself?”

The online world of the internet presents many opportunities to engage with information in such a way that has never been done before. Anyone with internet access can research information, find solutions to problems, assess various situations from the experience of other users, seek out persons whose interests align with theirs, etcetera. The internet is such a vast place of information, that if you are not an expert on a particular subject, the information available can be overwhelming. More so, it can be difficult at times to tease what information is relevant, valuable, trustworthy, replicable, realistic, valid, unbiased, reputable, and evidence-based. Continue reading “Patient-Centered Care Part 2 of 2: Being Your Own Health Care Manager”Facebooktwitterredditpinterestlinkedinmail

Canada’s 150th Birthday!

FacebooktwitterredditpinterestlinkedinmailCELEBRATE CANADA’S 150 WITH CANADIANS WITH DOWN SYNDROME


Happy 150th birthday, Canada!

To celebrate, The Canadian Down Syndrome Society wants Canadians to share photos and videos that depict the country’s diverse Down syndrome community, with answers to the the question – What Does Your Canada Include?

Inspired by Rick Mercer’s video “My Canada includes an extra chromosome,” share what makes Canada’s Down syndrome community great by sending The Canadian Down Syndrome Society photos and videos of you in your community with signs that answer the question.

The Canadian Down Syndrome Society will share all of these photos on their website in time for Canada Day! 

Down Right Cute has created a template for you to write your unique phrase.

Cannot come up with an idea? You are welcome to use one of ours!

Down Right Cute would like to thank the Canadian Down Syndrome Society for sharing my idea with all of Canada!

Rules:

-You must be Canadian to participate

-You must include the words “My Canada includes…

-The photo(s) and/or video(s) must be your own – please do not submit copyrighted photographs.

Please submit photos and videos to: http://cdss.ca/my-canada-150/

Deadline: June 23, 2017.

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Patient-Centered Care Part 1 of 2: Patients Are Their Own Health Care Manager

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Patient-Centered Care Part 1 of 2: Patients Are Their Own Health Care Manager

Patient Rights and Managing Your Care: Preventing “Bandage Solutions” by “Taking the Wheel”

When one is seeking services in the health care system, it can be overwhelming if you do not understand what is happening in your body; knowing and understanding your diagnosis; what tests may be performed, why and what they mean; and what kind of treatment you are getting, for what reason and how it is supposed to help you. It can be even more overwhelming when you are in charge of looking after someone else’s health and it is your responsibility to make the best-informed decision that you possibly can with the information you have at hand, provided that you understand all the information that is given to you. Continue reading “Patient-Centered Care Part 1 of 2: Patients Are Their Own Health Care Manager”Facebooktwitterredditpinterestlinkedinmail

Birth, Breastfeeding, and Mothering Stories: From a Mother With 4 Children

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Mothering Is A Never-Ending Process of Learning About Yourself

I have always been interested in mothering. I knew from very little that of all the things I could possibly be when I grow up, I would at least have to be a mother. I had a passion for caring for others and loved babies. Any new cousin I would see, I would immediately await to hold them because even at that precious age of 8, I knew that babies were not only cute. They were in need of care, love, and attention. Continue reading “Birth, Breastfeeding, and Mothering Stories: From a Mother With 4 Children”Facebooktwitterredditpinterestlinkedinmail