It is Down syndrome awareness month and I have to tell you, sometimes I wish that I could be a little less aware of Down syndrome. Some days I don't feel like being an advocate, or a mama bear or a warrior mom. Some days I just want to be a regular old mom.
This weekend is my birthday and I will be spending it at a leadership workshop on how to advocate for people with disabilities.
The next weekend I'll be at the Buddy walk, listening to speeches about Down syndrome and walking with my son Benny.
Personally I would rather people forget that Benny has Down syndrome at all. I wish they could just see him for who he is - a bright and bubbly preschooler.
But even though I'm tired of talking about Down syndrome I keep on doing it. I keep on writing blog posts and sharing in real life and on social media because every day I see how much prejudice there still is against people with Down syndrome.
Disabilities are the last acceptable prejudice and I want to change that in my lifetime. For Benny. And for all of the many people who have disabilities. And so I keep soldiering on this uphill battle, thankful to all who came before me and paved the way for me and my family.
Recently I encountered this prejudice while looking into kindergartens with my friend who has a typical son the same age as Benny. The experience was heartbreaking.
A woman giving a tour at one middle of the road charter school was stumped when my friend asked what kind of services they had for students with special needs. She had just finished waxing poetic about the self-contained classroom for gifted and talented students (GATE) but stuttered "special needs?" and looked completely perplexed as to why we would ask about something so obviously horrifying. (Nevermind that services for gifted students are also under the umbrella of special education.)
"My son has Down syndrome" I explained.
"Oh, we've never had any students with Down syndrome. I don't know what we would be able to provide for a student with Down syndrome." she said looking absolutely petrified at the thought of my son and his potential extra needs coming to her school.
Defensively I told her that I had visited our designated school and that it was far superior to this one, to which she looked relieved and told me that I should "just keep him there".
The next day my friend called me ecstatic about a public Montessori school he had just toured. I listened excitedly as he talked about the open classrooms with multiple grades, the project based learning, the GATE certified teachers in every classroom and the violin training every student receives. Then he mentioned that he had asked and the school didn't have any resources for kids with special needs like Benny.
I got off the phone and cried. I wanted to be happy for my friend, I really did, but in that moment all I could feel was heartbreak that my son wasn't welcome at that school.
And that is what discrimination looks like. These publicly funded schools are actually required by law to provide a free appropriate public education to all students regardless of their extra needs, but they don't want to. So instead they discourage parents of children with disabilities from enrolling their children, despite decades of research that shows undeniably that an inclusion model that provides appropriate accommodations is far superior for every student in the classroom.
Last night the fact that my son is being denied the same opportunities for kindergarten as his peers made me cry.
But tomorrow I will not cry. Tomorrow I will arm myself with an idea. The IDEA specifically, the Individuals with Disabilities Education Act. And I am going to go to the district office and I am going to give them a piece of my mind.
This is what happens to parents of kids who have Down syndrome. You get tired of talking about it. You get tired of bringing everyone's awareness to it. You wish everyone would be less aware of it. But then somebody discriminates against your kid because of it, and they awaken the advocate, the mama bear and the warrior parent inside of you. Soon they will hear your roar and they will know no mercy.
Tomorrow we will be wearing our crazy socks (and shoes) for World Down Syndrome Day to represent the joy that people who are a little bit different bring into our lives. This will be the third World Down Syndrome Day we've celebrated since having our son Benny, and I have to say that in his three short years he's already busted a lot of the stereotypes I had about trisomy 21.
One of the concerns that every parent has for their child is whether or not they will be able to have a career when they grow up. In America the unemployment statistics for people with developmental disabilities is unfortunately very high.
But Benny has already had his first paid job! When he was just two years old Benny landed a modeling gig with Target. He already has his very own bank account.
We had heard that it's rare for people with Down syndrome to be able to drive. This was something my husband was especially concerned about. Watching Benny drive his power wheels around we are pretty certain that he will be able to drive a real car around someday if he wants to.
Another worry has been whether or not Benny will be able to make and keep friends. So far he has proven to be very outgoing, and every day when I pick him up from school his friends say bye to him and give him hugs.
He has also made several friends outside of school who really enjoy his company. Although Benny has limited speech, he is very expressive and imaginative in his play. In most ways he is a pretty typical boy - he and his friends love to play with trains and cars and action figures.
He also loves to play with toy guns, and will pretend to shoot his friends, and very dramatically fall down after getting shot himself. Unfortunately this is starting to get him in trouble at school, so I'm working on redirecting this behavior, although I secretly love that he is such a little stuntman!
Recently we decided that it was time to talk to one of his friends about the fact that Benny has down syndrome.
Because his friend is only four we kept the information very simple, and just explained that Benny has special needs because he has Down syndrome, which means he was born with an extra chromosome. That this little difference means that sometimes it takes him longer to figure out how to do things, and sometimes it's harder for him to understand or communicate. His friend listened to our explanation, said "ok", and moved on to play with his train tracks.
The two have been playing together for over a year now and I had been nervous about how this conversation might go. I feel very lucky that this little boy has such a big, sweet heart that he completely accepted this new information about his friend, and has continued to ask to have playdates with Benny even after finding out about his Down syndrome.
This is the kind of response that I was hoping for, and that I wish everyone would have when they meet someone with Down syndrome. "It's just a little difference, no big deal, let's hang out!"
It’s easy to look at the violence this past weekend at the white supremacist rally and think “those people are evil, they are nothing like me, and I could never do something like that”.
But if we are going to evolve past racism we have to put down our self-righteousness and look deep into our own souls. The first step to overcoming a problem is to admit that it exists.
I’m a racist. You’re a racist. We’re all born racists.
There is an evolutionary aspect to racism. People who are very different from people like us represent a possible danger to our way of being.
Sometimes this fear is unwarranted. Sometimes someone from a different race can come into our lives and teach us a better way of being.
And sometimes they want to control us, take everything we have or even try to wipe us out completely, like the Europeans did when they arrived on this continent.
The ability to quickly assess and pass judgment on our fellow humans has a distinct evolutionary advantage, so it’s no wonder that we have to fight our natural instincts in order to be kind and tolerant of one another.
Personally, from an early age I was taught that tolerance, peace and love were good, and that racism, violence and hatred were bad, so this is how I tend to operate in the world.
When I think about the Grand Dragon of the KKK saying that he’s “glad that girl died” during the Charlottesville rally, it is pretty incomprehensible to me. It makes me want to deny my own basic humanity, to push away the fact that if I were raised differently I might be capable of acting in such a way.
As easy as it is to condemn racism, if we want to eliminate it we must first embrace it. The truth is we have to be taught to be tolerant, not the other way around.
To put an end to this type of racism, violence and hatred we must find a way to teach tolerance, peace and love on a grand scale. But first we have to acknowledge the root cause of the problem, which is our inherent fear of differences.
Nowhere in our society is our fear of difference more apparent than in the way that we approach people with disabilities.
As a parent of a child with down syndrome, my heart was hit hard this week by a CBS news report that “Iceland Is On Pace To Virtually Eliminate Down syndrome Through Abortion”.
While I had already known about the statistic that Iceland has a near 100% termination rate of fetuses that test positive for trisomy 21, watching the news report made that statistic much more real for me.
When we talk about race we are generally talking about classifying people by a set of common characteristics that they’ve inherited through their genes. People with Down syndrome have a set of common characteristics caused by their extra chromosome that others in society use to identify them.
I would argue then, that Down syndrome is a race, and that the massive efforts by governments around the world to eliminate this chromosomal abnormality is institutionalized racism. Others would say that it is simply eugenics, whether you classify Down syndrome as a race or not. Either way, it is a moral quandary that we as a society need to examine.
Before I had a child with Down syndrome the article on Iceland probably wouldn’t have even caught my attention. I certainly wouldn’t have drawn a comparison between the blatant racism of the KKK and that of governments around the world attempting to eradicate chromosomal abnormalities. “Families have the right to be informed and make that choice” I might have said.
But then, before I had Benny I didn’t know anyone with Down syndrome, or any other chromosomal abnormality. In fact, I distinctly remember that while I was pregnant with my older son the thought of him having a disability or deformity was one of my greatest fears, right up there with the idea of having twins.
People with chromosomal abnormalities have the toughest lot in discrimination, because it starts with their own families. While people of a different race are usually born into families of the same race, people with developmental disabilities usually are born into families who do not have any. If they are lucky enough to be born at all, their families must overcome their own innate fear of difference in order to love and accept them.
As someone who has been through this process I can tell you that it isn’t easy. In order to make the decision to keep my pregnancy, I first had to overcome a tremendous amount of fear. Fear of the unknown. Fear of hardship. Fear of challenges. Fear of being different.
To make this more difficult, the doctors and genetic counselors who discussed our diagnosis with us were extremely negative about the future we were deliberating on.
My son just turned three, and some of those negative predictions have come true. He does have more medical problems that my other son ever had. He does have some developmental delays. These things are true.
But it’s also true that in the process of learning to accept his differences, we have gained something invaluable as a family. By pushing through all of that fear and coming to a place of tolerance, peace and love, we are better people.
And that is what we gain as a society when we push back our fear of differences. We become better people.
But first we have to know that we’re there. We have to see the fear, feel it, acknowledge it and then we can finally move past it.
So this is where it’s up to you. You cannot change anyone, but you can influence them by shining a light for them in the way that you act in the world.
The first step is to admit the problem. You are a little bit afraid of people who are different than you. That’s okay, we all are. Today I challenge you to challenge yourself to identify the people who scare you the most. Dig deep. Do you avert your eyes when you see someone drooling in a wheelchair? Do you make assumptions about the person behind the cash register at the gas station? When you hear a certain kind of accent does it change your impression of that person’s intelligence?
Identify and examine this with brutal honesty. What is it about “those” people that scare you? Once you have been honest with yourself about your own fears, go forth and work on overcoming them. Smile and say hello to the person drooling in the wheelchair. Ask that person behind the cash register how their day is going. The next time you hear that accent, instead of assuming low intelligence, try engaging them in a discussion about the meaning of life.
This is how it begins, one person, one conversation at a time. Thank you for taking part in the changing of our societal fabric. It’s not easy, but most things that are worthwhile are difficult. Challenge yourself today. We can make the world more tolerant, peaceful and loving. It starts with you and ripples out.
In our achievement driven world having a child with Down syndrome has been a huge eye opener for me. I didn't think much about the nature of disabilities before I had Benny, but now that I know him I want everyone else to know that disabilities bring something valuable to our world.
Every child brings their own unique set of attributes into the world and Benny is no different. His beautiful smile and exuberant nature lights up our lives. He has a knack for cheering people up. He has a profound appreciation for good music, friends and family. These are not the achievements that pediatricians check off on developmental questionnaire boxes, but the best things in life cannot be measured.
Recently I watched the TedX talk Socially Constructing Down Syndrome by fellow rockin mom Cara Jacocks. Towards the end of her talk she mentions the many accomplishments of adults with Down syndrome who have achieved what we consider stereotypical success in our society - high profile jobs as actors, models, athletes, entrepreneurs, etc.
While these successes are exciting, and as a mom I always love sharing the accomplishments of others with Down syndrome, I worry that highlighting these rare high achievers may do more harm than good towards changing the underlying prejudice that is so harmful to our families.
If we really want to change the conversation around disabilities we need to talk about what those disabilities bring to the world, not what people with disabilities are "able" to do despite their disabilities.
Many people with Down syndrome will not become high career achievers. In fact, the statistics on employment for people with intellectual developmental disabilities is abysmally low. Many of us who have children with Down syndrome know that there is a high possibility that they may need care for their entire lives. But that does not mean that their lives are not worth living.
If we really want to change the conversation around disabilities we need to talk about what those disabilities bring to the world, not what people with disabilities are "able" to do despite their disabilities.
While working on an episode of my podcast T21Action last year I had an eye opening discussion with Sandra McElwee, author, activist and mother of Sean from the reality show Born this Way. One of the books she has written about Sean talks about the importance of inclusion in education. When I asked her why inclusion was important, she surprised me by saying that inclusion is better for every child in a classroom, including the highly gifted children.
Statistically, every student in a classroom benefits from having children with disabilities present. All of the students benefit not just socially, emotionally, and academically but they even score higher on intelligence tests.
Apparently learning together with people with disabilities actually makes you smarter.
This kind of blew my mind. I asked Sandra how sharing the classroom with a student who has disabilities could actually improve IQ scores of neuro-typical students because it seemed too incredible to be true. She said that we learn best when we teach others, and that it's also a confidence booster, both of which can increase intelligence test scores.
We live in such a high achievement world, and I’ve seen so many parents fighting to get their children into the “best” schools, which are so often ones that cater to students who are gifted high achievers and exclude different learners who may not test as well.
Apparently learning together with people with disabilities actually makes you smarter.
If including students with disabilities raises the abilities of every single student in the room, than our current model is incredibly damaging to every child.
This follows into the adult world, where the statistics on the workplace match those in the classroom. Workplaces that include people with disabilities report more productivity, job satisfaction and retention of workers. In other words, people work harder, are happier, and more likely to continue working for that employer for longer.
With statistics like that companies should be clamoring to hire people with disabilities! Instead, as I mentioned previously, people with disabilities, especially intellectual ones, have the highest rate of unemployment in the United States.
This needs to change, and it starts with a paradigm shift about ability.
These statistics prove that it is not the rare high achievements of people with disabilities that bring value to our world. It is the disability itself that makes our lives better.
How is this possible? We have been brought up to believe that the worst thing in the world is to not have the same abilities as everyone else. We have government programs designed to prevent people with disabilities from being born at all, because our fear of them is so great.
What if people with disabilities aren’t a burden to society at all? What if they bring something critical to our world? This is an important question to ask ourselves, as early prenatal testing has already begun the process of eliminating people with disabilities from society not just from exclusion but from having never been born at all.
As a mother I still prefer to highlight my son’s capabilities, and I still worry about what he may never be capable of. I have a long way to go before I rid myself of the societal conditioning that makes it so hard to embrace disability.
The truth is, this is what makes it so hard to embrace all of myself as well. I am not capable of everything. I criticize myself for not being more organized, for being so terrible at math, for my inability to properly aim or catch a ball in any sport.
The truth is we all have disabilities in one way or another, and we all spend too much time trying to compensate for them. Separating ourselves from people with disabilities keeps us from seeing the beauty in ourselves and our own challenges and areas of weakness.
Today I challenge myself to accept and love the parts of myself that struggle, and to find pride in the things I cannot do.
We cannot control or change anyone but ourselves, but I hope that in working on my own acceptance of disabilities that I inspire others to do the same. Let’s embrace our disabilities, celebrate our differences, and let go of our assumptions about what creates worth. By doing so you may find, as I did, that the world is a much better place than you ever imagined.
Not every doctor sees Down syndrome as a treatable condition. Many will dismiss symptoms that would be alarming in a typical child because it's "just part of the Down syndrome".
Thankfully there are some doctors who realize that Down syndrome is treatable. We are lucky enough to have our son Benny in the care of one such doctor, the wonderful Dr. Erica Peirson.
Since working with her to correct Benny's hypothyroidism we have seen him go from an infant with incredibly low muscle tone, near constant tongue thrusting and poor health to a strong little boy whose trisomy 21 isn't having such a huge impact on him anymore.
Despite these obvious signs of congenital hypothyroidism as a newborn, Benny would still not have been diagnosed to this day if it weren't for Dr. Peirson.
All of his other doctors would only look at his TSH and T4 levels, which were only slightly off. Dr Peirson looked at all of Benny's thyroid levels and discovered that his reverse T3 was off the charts. This meant that Benny wasn't absorbing the T3 into his cells. He was suffering from hypothyroidism just as much as if his T4 or TSH were high.
I am so grateful that we discovered this fairly early on. My only wish is that we had found out even earlier. Untreated congenital hypothyroidism causes irreversible brain damage, and the longer you wait to treat it the worse it is.
Unfortunately, many babies born with Down syndrome will suffer this avoidable brain damage because so many medical professionals will dismiss their obvious hypothyroid issues as being caused by their extra chromosome and fail to run all of the labwork necessary to identify and treat the issue.
After witnessing the incredible transformation in my son and realizing how many babies born with Down syndrome are not benefiting from this information, I asked Dr Peirson if she would talk to me about these thyroid specific issues related to Down syndrome on our T21 Action podcast.
The result is this truly amazing interview that I am so very proud of. I hope that you will listen to and share this podcast with anyone you think might benefit.
This simple, natural fortification method for a high calorie infant formula helped my son Benny stay healthy and gain weight before his open heart surgery at four months old.
Because my son had congenital heart failure due to his complete av canal defect he stopped gaining weight when he was about 6 weeks old. This was a terrifying time for us. We were unable to find a bottle he would take, and I was reluctant to give up breastfeeding, so I knew I had to find a solution that would allow us to continue breastfeeding while helping him gain the weight that he needed.
Since he was burning more calories just with the effort it took to breathe, he needed a higher calorie milk. In order to keep him at the breast, I nursed him every 2 hours for 20 minutes while using a Supplemental Nursing System (SNS) filled with high calorie milk. We started at 24 calories and eventually increased to 26.
Eventually we were able to get him to take a bottle by using a preemie nipple on a Dr. Brown bottle. In between nursing he was given as much as he could drink of an 8 ounce bottle of fortified milk. Often I could not pump enough milk in addition to what I was breastfeeding, so we supplemented with the goats milk formula listed in the table above.
Using maple syrup to fortify breastmilk and the goats milk recipe was recommended to me by a highly respected Naturopath who specializes in the treatment of children with Down syndrome. She had used this with her own son who has Down syndrome as well as with other patients. At first I was hesitant to use maple syrup, but she pointed out that in comparison to the ingredients in commercially made formula, organic natural maple syrup is much easier for a young baby to digest.
This turned out to be very true. My son became constipated and uncomfortable when we tried using any kind of commercial formula, which backfired on his weight gain since he wouldn't want to eat when he was constipated. With the maple syrup and goat milks formula my son had no health problems caused by the fortification.
I also worked with a doctor who specializes in high risk infant feeding, and that is how we came up with the system of feeding him every 2 hours for only 20 minutes at the breast with fortified milk in the SNS, and fortified bottles in between.
It was a lot of work, but I'm so glad that we did it. My son was a healthy 11 pounds when he had his surgery at 4 months. The surgery went beautifully and he returned to exclusive breastfeeding as soon as he was off the ventilator after surgery. His entire hospital stay for the surgery was only 5 days and we have had a beautiful breastfeeding relationship ever since.
If you think that this might work for you, please talk to your doctor first. My cardiologist made the calorie recommendations and was on board with everything that we did to help my son gain weight. This was critical going into surgery.
I hope my story can help other parents and medical professionals who are looking for alternative ways to fortify babies milk in order to help them gain weight. Please feel free to comment here if you have questions or would like to share your own method for helping babies gain weight.
Here are some pictures of our journey. As you can see, we started off in a very scary place, and ended up in a very happy one.
March 21st is coming up which is a big day in the world of Down syndrome. The numbers 3-21 take on a different meaning when you have a child with Down syndrome, also known as Trisomy 21.
Today the site "A Day in the Life of Down syndrome" is looking for day in the life stories. I know how important this is because when we got our prenatal diagnosis it was other parents stories that helped me to have the courage and faith to continue with the pregnancy.
This was especially helpful for me because the way that our diagnosis was delivered was incredibly negative. Having access to another perspective was key to our making the best decision for our family.
To get an idea of how our diagnosis was delivered, I would like you to imagine for a moment that you are pregnant and you've come in for an ultrasound.
The ultrasound tech can't tell you anything, so you wait for the obstetrician. She comes in with a serious look on her face.
"I'm sorry to tell you, but it is highly likely that you're having a boy. We could do an amniocentesis to find out for sure, but given the results of your blood test and this ultrasound, I'm 99.9% sure that you're having a boy."
She goes on to say, "Boys have a higher risk of cognitive and behavioral problems like autism and ADHD, as well as a higher incidence of serious health problems like cancer and diseases of the heart, lungs and nervous system. They also have a lower life expectancy. I can't tell you how severe your baby will suffer from being a boy, but these are the statistics." She goes on to tell you that in the state of Colorado you have two weeks to legally terminate the pregnancy.
Now these statistics are true, boys do have a higher rate of cognitive, behavioral and health problems than girls, and women tend to live much longer than men, but if this was the way parents were informed about their child's simple chromosomal difference, there would be a lot fewer boys in the world.
Replace the word "boy" with the word "baby with Down syndrome", and you have a pretty good idea of how we were informed of our diagnosis.
It is no wonder that so many parents who receive a prenatal diagnosis of Down syndrome choose to terminate. The rates are between 60-90% depending on country and reporting agency. This is heartbreaking when you consider that the differences between people who have Down syndrome and those that don't are no greater than the differences between girls and boys.
A few weeks ago a post circulated of one such story, a woman who ended her much wanted pregnancy after receiving a diagnosis of Down syndrome.
Reading her story made me so grateful to all of the parents who shared their stories of the absolute joy and delight they experience every day raising their children with Down syndrome. It was reading these stories that meant the difference between her story and my own.
So this is why I've decided to participate in the Day in the Life of a person with Down syndrome. You can find my Day in the Life post here, along with many others, or just continue reading it here:
My story is very similar to that of most parents of young babies, a combination of exhaustion and joy.
Nearly every day Benny wakes up with an enormous smile. His smile lights his entire face up, and fills the room with joy.
This morning was not one of those days. Benny is seven months old, and this morning he had a wet diaper and a stuffy nose. My husband took him into the living room so I could sleep in for a few more hours. (And yes, I do know how lucky I am)
After my husband left for work and returned Benny to me I nursed and cuddled with him until the handyman arrived and rang the doorbell. My older son, home with strep throat, jumped into the room with a baseball bat to defend our home from the intruder.
After talking him into putting the bat aside, I answered the door and set Benny down on his play-mat in the living room so that I could talk to the handyman.
When I returned he had rolled over onto his stomach and was happily scooting around on his belly like a lizard.
He is always quite proud of himself when he manages to get anywhere like this. Getting to this point has taken some hard work, and we are pretty proud of him too.
I picked him up and sat down with a few books. The first book had little flaps hiding various body parts like toes under boots. Benny is still getting the hang of using his hands, but he was able to open and shut a few flaps, possibly even on purpose.
Next we read a book about bears. We are teaching Benny to sign, so I practiced all the signs I know as I read the book to him.
Later on I sat him in his high chair and fed him some smooshed up peas and avocado. It was his first time tasting peas and he was a fan.
Eventually he had a nap while I played with my older son who had way too much energy for a sick 11 year old.
Juggling both boys was tiring, and by the end of the day I was grateful to have the chance to sit down and write this post.
It's true that Benny is different than his brother was as a baby. Some of that is due to his Down syndrome, but the majority of the differences I notice are because Benny has a much sunnier disposition.
Despite Down syndrome and undergoing heart surgery at four months, Benny is pretty close to on par with his typical peers. This is largely in part to Early Intervention services that we've been receiving since he was three weeks old. Every week his Occupational Therapist, Sara, comes and works with him.
He adores her, and works hard to impress her. While she is working with him she is also teaching us what to work on in the week between her visits.
When he was a newborn she showed us how to hold his limbs close to his body, and help his head rest in a midline position. This helped combat his hypotonia, also known as low muscle tone. Each week built on another skill that we had practiced the last week, until it all fit together and suddenly he was rolling over, sitting up, reaching for toys...doing all the hard work of babyhood just like other babies his age.
Soon we will be meeting with a speech therapist. I am looking forward to it. Even though he is still in the babbling stage, after seeing the power of working with an Occupational Therapist very early on, I am eager to get as much help with speech as possible.
In addition to these services, I am constantly monitoring the internet for new ways to help Benny. There is so much new research happening, it's really exciting. Already the life expectancy of people with Down syndrome has gone from 11 years to 60, and every day I hear stories of the amazing things adults with Down syndrome are accomplishing now. With modern medicine and our improved understanding of the condition, this is only going to get better.
I've found a great deal of research that indicates specific vitamins and supplements help with trouble areas common to Down syndrome. I started taking some of these prenatally and continue to take them now while I'm still breastfeeding. In addition we are also working with a naturopathic doctor who specializes in Down syndrome. She looked at Benny's thyroid levels and prescribed appropriate medication to help remediate some issues that had come up.
I believe that staying on top of this has helped Benny greatly. And it's not much more than I did with my older son. I enjoy researching and have always wanted to do everything I can as a parent. The biggest difference with Benny is not the therapy or the supplements, it's that I have more support.
And not just support from Early Intervention - the Down syndrome community is amazing. I have yet to meet a parent of a child with Down syndrome that is not an inherently good person. And in talking to other parents it seems that it is almost always the child with Down syndrome that is the easier child.
Yesterday a friend of mine stopped by with her two little sons who had fallen asleep in the car. The weather was beautiful so we drug out two lawn chairs and sat next to her car in my front yard. Benny played with toys on a blanket in the grass and we chatted about various things. Eventually the conversation turned to how funny it is that Down syndrome has turned out to be no big deal.
I am still early on in my journey, but I can tell you that so far I am very, very happy. My husband and I often spend ridiculous amounts of time just enjoying how wonderful our baby is. He delights us with his loving energy that radiates out of him. It is almost impossible to be in a bad mood with Benny in the room.
I know from experience that not all babies are like this. My older son was a lovely baby, but he was not the positive ray of sunshine that Benny is.
I know that we will continue to have our challenges, just like all parents do. I am sure there may be times that I curse that extra chromosome, but I will never regret my boy that has it. He is the sunlight that illuminates our days, and I cannot imagine life without him.
Having a baby who needs oxygen really sucks for many reasons. First of all, the baby hates it because it's so uncomfortable with a hard thing in their nose and tape all over their face and a tube tugging all the time. But much worse is the fact that your adorable baby now has something covering their cute little face...something that makes them look like they're sick. So instead of people saying "What a cute baby" they ask "What's wrong with your baby?" and that just sucks.
When Benny first got prescribed oxygen I really freaked out. At first I just despaired that there was no way we could do this. Then I pulled myself out of it and tried every different method of keeping the cannula on his face that I could find - paper tape, tender grips, cannulas that claimed they were softer on a babies face...none of them worked very well. Benny hated it, I hated it, our whole family hated it.
Finally I reached out to everyone I knew who had ever had a baby on oxygen. Since we live more than a mile above sea level, that’s actually a lot more people than you might think. I got a lot of advice.
One mom shared that to keep from tripping over the long oxygen tubes running from the concentrator in an upstairs bedroom to her living room she used cable concealers and multiple tubes.
We were very excited about this idea, and my husband immediately ran out to a home improvement store and bought a kit.
Another method someone showed me for dealing with the great oxygen tube tangle problem is to use a pacifier clip to hold the oxygen tube at a loop at your belt buckle like this:
Soon after these great discoveries, a very experienced Oxygen Mom came over and showed me all of her tricks. She showed me how to cut up pieces of Tegaderm Film and apply it at the temples and behind the ears to keep the nasal cannula in place. This was much easier on his skin than the "Tender Grips" bandages, which ripped his skin off when removed, making him scream in pain and leaving bright red painful circles on his sensitive newborn skin.
She also showed me how to snake the tubing down his outfit so that it wouldn’t get caught and accidentally strangle him.
She told me that I could request small tanks and a backpack from the oxygen supply company, which allowed us to be much more mobile. (Surprisingly the oxygen supply company hadn’t bothered to tell us or supply us with one until we requested it. They had only given us giant tanks to lug around) With the little tanks we felt liberated. We were even able to use slings and front carriers and go for walks.
An emergency hospital stay led to some further insights on how to make Benny's oxygen use more comfortable.
While we were there a nurse told us about a nasal gel we could put on his nose to keep it from getting too dried out. We also discovered that having a humidifier on his oxygen line really helped with his comfort.
We asked if we could take home the bottle they had used in the hospital to add to his line at home. Unfortunately, Benny was nearly drowned when my husband accidentally tipped the water over into his oxygen line.
After that we decided to take it off until we could get a proper system. During the drowning incident we also decided to come up with a better system for keeping his nasal cannula on. My sister Josephine was visiting, and helped me to modify some of his knit hats so that we could tie the tubes up over his ears and then cinch it under his chin. This had the effect of keeping the nasal cannula in place and the hat on at the same time. It was also easy to remove, so that if there were ever another incident where we needed to remove the cannula quickly we could.
The first hat that I modified I simply cut a couple of holes on either side of the hat and used pipe cleaners to hold the tubes in place. It worked really well and also looked really cute, but I was afraid that the pipe cleaners might accidentally poke his head if I used them at night.
I happen to live by a yarn shop, and Josephine stopped by to see if she could find a good material to use. The shop owner helped her select a yarn that was not too stretchy, so that it would stay in place well, and a yarn needle.
Sewing the yarn onto the hats is really simple and only takes about a minute to do once you have a yarn needle and yarn. We shot a little video to show how, but the files corrupted somehow, so I’ll have to reshoot it and post it later. In the meantime, here are some pictures with directions on how to create your own cannula holding hat:
Soon after we created the modified hat system, Benny had to take another emergency trip to the hospital. Everyone commented on how cute and functional his hat was!
We also made another discovery. He happened to be wearing a pair of snap down footy pajamas the day he needed to go the hospital. We discovered that in the snappy pjs, he was able to remain clothed despite having tons of wires and tubes running all over him for monitoring. This discovery came in handy later when he had heart surgery. We stocked up on snap and button down pajamas beforehand, as well as leg warmers. It's silly little things like this that can make a hospital stay so much more comfortable.
Knit hats get loose after a day or two of wear, so if you try the hat system I recommend either making many knit hats and washing them often, or using a sun hat. If you are not the DIY type, there is a company that sells hats, o2kidslids.com. We bought a hat from there as well, and it worked great other than that I hadn’t ordered the right size, so it was a bit big on Benny.
With all of these tricks, I quickly became a pro at keeping Benny oxygenated in style and comfort. Still, it was a big relief when he finally started keeping his levels up on his own. How easy life seemed without all of the tubes and tanks and machines that came with the oxygen.
Recently we got a call that Benny’s sleep study had shown his oxygen saturations levels dropping below 90 over half of the time. Our doctor recommended putting him back on oxygen full time for a month.
I was devastated. We had all enjoyed the freedom without oxygen and the idea of having to do it all again seemed like torture.
Today is the first day I’m going to leave my house with Benny since having to put him back on oxygen. I am bracing myself for it as I had really been enjoying just having a baby. A cute, healthy-looking baby. A baby whose health condition I didn’t have to explain if I didn’t feel like it. A baby who came just with a diaper bag and a car seat, not all of the normal baby stuff plus a backpack, tanks, tubes and all the various oxygen tank accessories.
This was one of the hardest blog posts I’ve written because I really wanted to be cheerful and upbeat about having a baby on oxygen, but I don’t feel that way. Having any kind of baby is hard. Having a sick baby just sucks. It doesn’t mean I love Benny any less because he has health problems, it just means that sometimes I have days where I just don’t want to go outside. I don’t want to explain to the kind, curious strangers that no, my baby wasn’t a preemie, that he has Down syndrome and is recovering from a heart defect and that’s why he’s on oxygen.
But he does and they will, and maybe my going outside with my baby and his oxygen tank will help somebody else feel like it’s okay too. Maybe my writing this post will help other parents who are going through this to know that they’re not alone, and that it is doable even if it does suck.
I hope so. Please let me know if you have any suggestions for parents who have a baby on oxygen that I didn't include here, and if you know parents who could use this information do share this with them. Thank you!
Today is the first day of Down Syndrome Awareness Month, a fact I would not have been aware of last October. It's only been six months since Down syndrome shot its way into my consciousness.
The day after I got the phone call that my prenatal Panorama test results had come back positive for Down syndrome I gave a friend a ride to the airport bus. When I told her the news and mentioned the possibility of termination she said "that would be the compassionate thing to do".
A sentiment echoed recently by author Richard Dawkins' insensitive tweet in response to a woman who expressed her "ethical dilemma" if she were to become pregnant with a baby with Down's syndrome. "Abort it and try again." he wrote, "It would be immoral to bring it into the world if you have the choice."
It's easy to make statements like this when you have less than a 1% chance of ever actually having to make that decision. When it's a live baby kicking inside of you it's a different situation.
Getting a prenatal Down syndrome diagnosis threw me into a moral quandary that I wasn't prepared for. On the one hand, this meant that our child would have at least some degree of intellectual disability. On the other hand, it also meant that our child would most likely grow up to be happy; in a recent survey of 284 people with Down syndrome, 99% reported they were happy with their lives, 97% liked who they are, and 96% liked how they look.
I'm not sure what the statistics are for the "typical" population, but my hunch would be that the numbers would be almost reversed. Most of the people I know would not say that they are happy with their lives, or that they like who they are or how they look.
Which begs the question, is it more important for our children to be smart or for them to be happy?
Which led me to an even deeper question. Why do we have children at all? They certainly do not make our lives easier.
These questions sat heavy on my mind as my husband and I debated our situation. Religion makes questions like these easier. Since neither of us is religious, we were pretty much on our own.
One Sunday morning I woke up early and in the quiet of the morning decided it was time for some spiritual questing. I got dressed and made my way to the Unity Spiritual Center near my house.
The sermon that morning seemed particularly relevant to me. I blinked back tears throughout the service. After it was over I made my way downstairs to find out more about the church. A woman introduced herself and we began chatting. I asked her what she did and she told me that she was a woman's health consultant and used to be a midwife.
Suddenly I found myself weeping in her arms as I told her through sobs that I was pregnant and the baby had Down syndrome and a heart defect. She soothed me and told me that it would be okay.
She told me that she had only delivered one baby with Down syndrome when she was a midwife. She said that the love in the room when the baby was born was stronger than anything she'd ever felt before. She felt that the reason so many babies with Down syndrome had these heart "defects" was because their hearts were so big and full of love. "If love was revered as much as everything else, people with Down syndrome would be held in the highest regard." she said.
It was at that moment that I realized that I was going to keep this baby no matter what. I had already felt that amazing love she was talking about.
And why shouldn't love and happiness be held in the highest regard? What else is there?
A peace settled over me that day, and continued through my pregnancy. I felt as though my baby was reassuring me that everything really was going to be okay. My baby had a complete av canal defect, which meant that instead of four chambers he only had one. One great, big, open heart. And that great, big, open heart was sending me wonderful, pure love that enveloped me.
Unfortunately, my husband couldn't feel the love coming from the baby the way that I did. He struggled with his fears and worried his way through the entire pregnancy.
The moment our son was born it all changed. The love Benjamin brought with him burst into the room and filled my husband's heart.
It is a strange journey we've had these past few months since he's been born. With the trouble he's had breathing on his own and the heart surgery looming in his near future we live in almost constant terror of losing him.
And we still worry about what his future will hold. Despite the uncertainty about what having Down syndrome will really mean for him as he grows up, we have already become Down syndrome activists.
This past Sunday we woke up early, packed extra oxygen and drove down to Denver for the Step Up For Down Syndrome Walk. I was both excited and terrified as to what we might find there.
Right now Benny is just a baby. He may be a little more floppy and spend more time in the hospital than other babies, but for the most part he's just like most other babies. I knew that seeing older kids and adults with Down syndrome was going to give us a glimpse at what his future might be like, and that could be hard.
When we got there I was surprised by how many people there were, and how few of them had Down syndrome. We made our way to the stage near the starting line, and I was just thinking that this was easier than I had imagined when the announcer called forward a young man to sing the Star Spangled Banner.
His voice was strong and unmistakably belonged to a person with Down syndrome. The crowd cheered him on even as he struggled with some of the words. A mixture of tremendous joy and sorrow filled me at his imperfect delivery. I tried to hold back the tears, but couldn't stop myself from pressing my face into my husband's shoulder and bawling.
True love means accepting things as they are, but that is not always easy. Our society values intellectual ability and verbal capacity above big heartedness and joyfulness. Many people think that it is kinder or more considerate to end a life rather than bring a child with Down syndrome into the world.
As a mother I want to protect my son from that world. I want to prove them all wrong, stick a finger in Richard Dawkins' fat, stupid face. But I don't know what the future will bring. I don't know that my son will overcome all of the prejudices against him. I don't know what level of ability or disability he might have.
All I know is that for me, I've answered the question of whether it is more important for our children to be smart or to be happy. It is more important for them to be loved. And I do love my son, whether or not he's smart or happy. And that is why I have children. To teach me that kind of love. And if Richard Dawkins thinks that's immoral that's just fine with me, because he obviously doesn't know much about love.
I took Anatomy in high school, but I guess I wasn't paying much attention when we learned about the heart. No matter how many doctors I talk to, I can't seem to get a good grasp on my baby's heart defect and pulmonary hypertension.
Yesterday my mother-in-law sent a letter to my older son explaining why his brother needs the constant low-flow oxygen he has recently been prescribed. It is the best description I've ever read:
Hi again Caspian!
I wanted to tell you a story about why your brother needs oxygen, and what the doctors will be fixing in his heart when he gets a little bigger....
Think of Benny's heart and lungs as a little house, with a furnace to keep it warm. It's cold outside, and Benny's little house has a door, and a window, and that furnace. Because it's cold outside, Benny likes, and needs, to have a warm little house.
Benny has to go outside frequently to get supplies--food, air, and wood for his furnace. Every time he goes outside, he opens the door and then closes it behind him, so the house won't get cold.
But Benny's door doesn't close quite right. The door to YOUR house opens only one way on its hinge, and it closes tight when it closes. Then to open it, it takes some effort.... you have to turn the knob, and pull it open. And when the wind is blowing hard outside against it, even in a storm, the door doesn't blow open on its own. It's SHUT, and shut tight.
But Benny's door to his house is more of a swinging door. It sometimes moves BOTH ways, and if there's a big wind outside, the pressure can blow it open and let the cold air in, even though Benny wants his house to stay tight and cozy warm. Sometimes that door is just not tight.
Also, Benny's window doesn't quite close. The glass doesn't go all the way down to the bottom--there's a few inches that are always open. The window wasn't measured absolutely correctly when it was made. So cold air is always coming into Benny's little house.
That makes the furnace work overtime, and harder than it should.
In the real world, Benny now has oxygen--which you can think of acting in Benny's little imaginary heart and lung house as being an extra heater. It takes some of the burden off his furnace in keeping his house warm. It also acts sort of as super fuel for his furnace itself, and protects it from getting overworked.
When Benny has his surgery, the doctors will do two things:
1. They will create a bottom to Benny's constantly open window. They'll put another piece of good, strong glass in that window, and then it will shut tight--not letting in any more cold air all the time. When the window has to open, it will open. When it has to shut, it will thus be able to shut. No more always a little open, letting in cold air.
2. They will fix Benny's door. No more swinging open with big winds outside. They will fix it so that it will only open ONE way, and when it closes it will shut tight. When the door has to open to get supplies, it will open, and then shut tight afterwards....not only to not let in cold air constantly, but also to not let those supplies roll away by accident.
So then, instead of Benny's little house being cold all the time-- because cold air is always coming in from the window and door that don't shut tight-- thus making his little furnace work so hard, and constantly, to help keep the house warm----with a repaired door and window, his furnace can work normally, like it should, and not so hard all the time. Also, Benny's house will be warmer and more comfortable. Everything will be easier, and more comfortable for Benny, once that door and window are fixed.
So until then, the oxygen will help his little furnace--take some of the burden off it by acting as super fuel for it, and also by acting as an extra heater.
It isn't heat, though, that's the issue--it's oxygen. Benny's heart and lungs need some help right now to circulate oxygen to his body. Our hearts actually have (what you could call) windows and doors between its chambers (the four "rooms" inside our hearts). They have to open one way, and one way ONLY,and they have to shut tight, and not open up backwards with pressure against them. Those doors and windows are called heart valves.
So the doctors will fix up Benny's heart, so that his heart home will stay nice and cozy warm, and his real body will be able to obtain and distribute oxygen well. Then when he gets older, and learns from you and your parents how to run around and ride a bike and swim, his body will have the energy and oxygen to do all that. The doctors know all about how to fix things. Benny just needs to get a little bigger first, before the surgery, and the oxygen he's using now will keep things going okay until that time.
You of course can't explain all this to Benny, but when you talk to him,you can tell him that even though sometimes having to have oxygen is blech, it's really helping, and it will be okay. He'll always have someone nearby to take care of him and keep him company.
So, big brother--I hope school is fun--your clubs, your friends, your teachers. Send us an Email and tell us when you get a chance.
Grandma and Grandpa
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!