Fixing the System Against Down Syndrome Prenatal Testing

2k
2k
18

The proposal last autumn to introduce the non-invasive prenatal test for Down syndrome, known as NIPT, on the UK’s National Health Service from 2018 has sparked a reaction within both the Down syndrome and the medical communities. Creators and many medics hail the test as offering women the chance to know with 99 percent certainty if their baby will be born with the genetic condition, while avoiding the previous invasive test. Reactions to the news have been both positive and negative, but also seem to be largely divided into two main groups: those with medical experience and those with personal experience of Down syndrome.

One of the allegedly major benefits of the NIPT is that mothers to be will know with almost 100 percent accuracy if their baby has Down syndrome, without the risks associated with the current amniocentesis test. Amniocentesis involves taking a sample of the amniotic fluid around the baby, not only is it less accurate, but it also carries a chance of inducing a miscarriage. The creators of NIPT argue that thanks to the availability of the new test, women will no longer have to take this risk. Yet, women were never forced to undergo this test, it has always been optional. However, the high numbers of women opting for it, despite the risk, demonstrates how a one percent chance of losing the baby is worth taking in order to be sure if the baby has Down syndrome.

Defenders of NIPT have argued there’s no evidence its introduction will lead to an increase in the termination of Down syndrome pregnancies, yet a large percentage of mothers whose babies are identified as having Down syndrome using the former prenatal test decided to terminate their pregnancy. In Iceland, where the test is already available, the termination rate is now 100 percent. There have been 3,213 abortions carried out on grounds of disability since 2015 alone, 689 of these were Down syndrome cases. Surely this is evidence enough that if more mothers are able to determine risk-free if their child has the condition, the number of babies born with Down syndrome each year most likely will begin to decline. The fact that 230 of these terminations were carried out after 24 weeks, the usual cut-off point for an abortion in the case of a non-disabled baby —  a 271 percent increase since 1995 — demonstrates the lack of equality disabled people have even before birth.

Leading part of the anti-NIPT campaign is the actor, comedian and mother of a boy with Down syndrome, Sally Phillips (best known as Tilly in BBC’s Miranda). She created the documentary “A World without Down’s syndrome?” which aired on BB2 last year in the hopes of offering people a new stance on Down syndrome and disability in general. The program has been highly praised, particularly by the Down syndrome community. But it has also received some criticism, namely for, “glorifying” disability or evoking guilt from mothers who had already aborted a baby with Down syndrome. One critic said that Philipps’ take on Down syndrome was overly positive and unrepresentative given that her son was “high-functioning.” Yet, why should that be an issue? We should not be determining whether we abort a baby based on their so-called “functioning level.” Once we start deciding who we do and do not want in our society, we begin to enter very difficult territory.

This is also a common issue with people on the autism spectrum, which I myself am on. Many scientists are desperate to find a “cure” for the condition, best referred to as a”‘neurotype,” while many people who are actually on the spectrum — including me — are against this. The common argument against this is that autistic people are “high functioning” and therefore not “in need” of this unfeasible “cure.” Yet, how can we ever decide which disabilities need “curing” and why is our society so obsessed with “curing” or eradicating difference? The voices of people actually affected by these issues are constantly ignored. People with Down syndrome and their families should be consulted on the NIPT test, and, interestingly, they are overwhelmingly against it.

It seems people are all too eager to dismiss campaigners against NIPT once they reveal they have a personal connection to the issue. This may happen now when I say that my aunt, who passed away at the end of last year, also had Down syndrome. Yet why do people perceive our views on this issue to be biased by our own experiences of someone with Down syndrome? If anything, we speak with greater authority on the issue because we know exactly how fulfilling a life with Down syndrome can be, and how much joy they can bring to their relatives. We have witnessed it ourselves first-hand.

The imminent introduction of NIPT on the NHS shows we still take issue with difference in our society, or why would we be so opposed to bringing babies with Down syndrome into the world? We will never be fully accepting of disabled people in our society until we accept the birth of disabled children. As the American disability activist Celeste Adams so aptly quoted in her TED talk, “Don’t fix us, fix the system.”

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Tatiana Dyuvbanova

2k
2k
18
JOIN THE CONVERSATION

The Future for My Son With Down Syndrome Is Full of Possibilities

2k
2k
0

A few days after our youngest son was born, he was diagnosed with Down syndrome. I did not handle his diagnosis well. I grieved the life I imagined for him and for us. I went through stages of denial, anger, bargaining, depression and acceptance. Then it felt like “rinse and repeat” through those emotions. It felt like a never ending cycle.

Eventually I asked myself, “Why is it when I imagine the future for my oldest son I look at all the possibilities, yet I don’t do that for my son with Down syndrome? Instead I fear what the future may hold for him? Is there any guarantee my oldest will be a healthy, happy, contributing member of society?” The answer to my last question was, of course not.

I assumed the best when I thought about my oldest’s future and worried and assumed the worst when I thought about my youngest’s future.

Worrying about one and not the other suddenly seemed pointless and unhelpful to me.

Both my children will lead different lives. They will each have different strengths and different challenges.

That one simple tweak to my assumptions broke the cycle I was on. It wasn’t that I stayed in “acceptance” mode. I simply realized there was nothing for me to grieve. The future for my son with Down syndrome is full of possibilities, just like his brother.

We want to hear your story. Become a Mighty contributor here.

2k
2k
0
TOPICS
,
JOIN THE CONVERSATION

When My Nonverbal Daughter With Down Syndrome Spoke Her First Sentence

3k
3k
10

Unexpected. Quick. Brief and succinct. Like wind in mid-summer. My 14-year-old daughter said her first sentence.

I’ve never heard her say “Mom,” “Dad,” or even her own beautiful name.

My 14-year old daughter Tayler has Down syndrome.  When she was born, she had to be resuscitated three times. Besides hypothyroidism, sleep difficulties, and hyperinsulemia, she is pretty healthy.

But she is unable to communicate and is considered nonverbal. Sign Language has not been an option for us because it requires fine motor skills she has difficulty with. She does make noises that sometimes get stares, and she has occasionally said “go” and “hey,” but never a full sentence.

Her amazing teachers told me Tayler has been trying to form words, but I wasn’t quite prepared for what happened after Sunday dinner. I just developed a meal of baked chicken coated with an unmentioned dressing. Nothing special. The cooked chicken rested quietly in a metal pan, with a simple salad alongside it. After dinner, my husband let the leftover chicken cool before returning it to its home in the refrigerator.

As I was leaving the room, I heard my husband say, “Tayler, what are you doing with that tray?”

Tayler lightly walked with both hands cupped on either side of the tray. I glanced quickly as she ended her stroll at our garbage can. She tilted the worn metal tray slightly and said, “Throw it away.”

She then handed the tray to my husband and casually walked away. My husband let out a huge, uproarious laugh. I simply stared in disbelief and shock. I never imagined chicken (that honestly wasn’t very great) would produce spontaneous speech.

The thoughts in my head included shock sprinkled with confusion, topped with a slight offense (the chicken wasn’t that bad). I felt complete and utter pride and joy.

She did have a point. This journey as a mom is full of unexpected surprises and turns.  But Tayler was correct — I needed to throw some things away. And maybe you should take my daughter’s advice too.

1. Throw away strict timelines.
Even if your child is “neurotypical,” sometimes growth is not linear. I believe change and progress will happen when it is meant to.

My goal was not to wait until the age of 14 for my daughter to say her first sentence. I felt sadness about her inability to speak, but it happened when she was ready. No words can describe the joy I felt when her first sentence flowed from her mouth. It was the realization that if she said one sentence, others would likely come.

2. Throw away self-doubt.
Tayler has had speech therapy for 14 years. But sometimes even when you do everything right, progress isn’t made. I noticed a certain maturity with my daughter this year. I’m unsure why this year in particular, but again progress is not always linear.  Sometimes stagnation can look like a mountain. Like Mount Everest. But even mountains can shift.

3. Throw away fear. Fear of disappointment. Fear of bad reports, especially the “no progress” type. The fear of what “might happen” or “what the end will be.” Even though removing fear is tough, I recognize it is unproductive.

I feared for my daughter’s future when she was born.  The older I get, the more I realize that the more I plan for her future, even financially, the better off she will be.

I’ll throw away fear, and replace it with action.

4. Throw away hurt and anger. At my daughter’s birth, I felt fear and hurt, and it festered. I felt as if life wasn’t fair. I would see other moms of children with Down syndrome and they were happy. I love Tayler with my entire being, but I was afraid and angry because I felt life might be hard for her. Her multiple hospitalizations and frequent doctor visits created a deep desperation to discover “why.”

I believe having Down syndrome is like a four-leaf clover. It is something that just happens. On the rough days, I’ll do my best to throw away the “Why can’t it be easier?” thoughts and remember that her differences are simply a part of her uniqueness and beauty.

5. Throw away random opinions. The stares sometimes bother me. What will people think if she has a meltdown? What will they say when she reaches out for a hug? What if she kisses them on the cheek? Will they feel weird? I’m throwing that fear of other opinions away.

Because the truth is, her hugs are precious. We have tried our best to teach socially appropriate behavior, but deep in her body exists a desire to hug and show others love, regardless of age, gender, or race.

So if that random stranger chooses to reject it, we shall shake the dust off of our feet and continue our beautiful journey.

I hope other parents will take Tayler’s advice. Even if life has thrown some seemingly insurmountable obstacles and you are faced with unexpected twists and turns, or even if you just made subpar chicken, you might want to take Tayler’s advice and throw a few things away.

We want to hear your story. Become a Mighty contributor here.

3k
3k
10
TOPICS
, , Contributor list
JOIN THE CONVERSATION

Learning to Let Go of My Child With Down Syndrome

3k
3k
2

I made a decision this week that I thought was surprisingly easy — I enrolled my just-turned 2-year-old son with Down syndrome in preschool.

After having a developmental surge in October, Anderson seems to have hit a plateau. He is able to walk, but is still working on gaining confidence. We’ve been on-board with the “surge-plateau” roller coaster. But now that he has less than a year before starting public school, everything seems more urgent to me.

When I saw Anderson copying his typically developing friend last week by taking some independent steps, a light bulb went off, lets start this inclusion process now. I went full steam ahead, sending emails, making phone calls and rearranging appointments.

I thought I was ready — more than ready. But when I unbuckled him from his infant car-seat and looked at his smiling, unsuspecting face, the tears started pouring. When I handed Anderson off to his teacher and saw him sitting on the floor, happy and playing with friends, it was a downright waterfall. As I sit here at a Starbucks, childless, I can’t stop crying.

But as torn as I feel right now, it’s not about me. It comes down to this: I’m raising him to leave me, like the rest of my children.

At times, this might look a little different for Anderson than for my other children. I know it means more appointments, and I suspect it will mean extra help and tutoring, and maybe even a firmer push at times. I believe this is one of those times.

I know he’s still a baby. Part of me questions spending time apart from him when this (mostly) sweet phase of life is so short. I may even have people thinking, “Slow down, Momma.” But I am not the kind of mom who slows down. I like to believe God gave me Anderson, in part, because he knew the kind of mom he needed.

So, I won’t let my tears cloud my vision. It’s time to trust my instinct. I’m letting go, because one day I want him to let go of me.

Follow this journey at News Anchor to Homemaker.

We want to hear your story. Become a Mighty contributor here.

3k
3k
2
TOPICS
,
JOIN THE CONVERSATION

The Excitement of Reaching Milestones for My Son With Down Syndrome

228
228
0

Cody is on the move. He’s bear crawling, pulling himself up onto things and moving all over the house. As can be common with Down syndrome, Cody hits his milestones later than a child without the extra chromosome. While other children the same age as Cody are quickly sitting up, crawling, walking, feeding themselves and starting to say words, Cody is not there yet.

When I was researching Down syndrome, other parents said that when your child reaches each of their milestones, it is a new level of excitement. They stressed the word “exciting” emphatically. They said it was a different level of excitement compared to typically developing children accomplishing their milestones. I remember when each of my twins started smiling, sitting, walking, talking. It was fun to watch them change and excel. Their growth happened so fast. They zoomed through each phase. The first 18 months seem quite a blur. I was curious on how different watching Cody’s growth would be. Would the delays be frustrating or would they be as exciting as these parents said they would be?

With a Down syndrome diagnosis, the “professional” focus seems to be on what a child will not do and there is a focus on the “negative.” It’s a good thing other parents of children with Down syndrome gave me this optimistic perspective, because they were right. Watching Cody reach a milestone is a whole different level of excitement. It’s a celebration of pure exhilaration that the whole family participates in. There is cheering and jumping around and shouting and rejoicing.

When you have to wait as you watch your child work so hard at something, you cannot help but be overjoyed when they  figure it out. Time may be be all they need, just a little extra time. And as a parent, it gives me the time to savor each phase. And the times when I wondered if my child would accomplish a certain milestone, just like that, he would. Once I saw a few milestones reached, I stopped keeping track of what he wasn’t doing yet. I knew it was going to happen, and I was able to enjoy the ride.

And the slower ride is actually kind of nice, because children grow up way too fast.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by: Ivanko_Brnjakovic

 

228
228
0
JOIN THE CONVERSATION

8 Things Down Syndrome Has Brought to Our Family

168
168
0

Down syndrome has brought amazing things to our family, making us better people and really happy.

These are eight things Down syndrome has brought into our family, and things it hasn’t.

1.  The ability to throw away the milestone chart.

The first thing Down syndrome gave to me as a Mum was the ability to throw away the milestone targets. To not feel the pressure that seems so prevalent in today’s parenting: that all children should be the fastest and highest achieving. It’s a huge relief to not be a part of the competition and to be able to enjoy the moments. And enjoy them we do!

What Down syndrome hasn’t brought to my life is jealousy of other “typical” children. I have friends who have children the same age as River and are miles ahead in development. In fact, I have friends who have children younger than River and are miles ahead of him. That’s just reality and it will most likely always be that way. I honestly don’t feel sad about it because I know River will lead a great life and achieve his own big things. I have no doubt about that. I wouldn’t want my friends to feel they couldn’t celebrate their children’s achievements with me, or felt they couldn’t brag about milestones their kids have reached. I want to enjoy their journey as much as I want them to enjoy ours. Our children are different and that’s OK. And it’s OK for me to celebrate River’s milestones later on. River may be different, but he isn’t less.

2. The gift of seeing people for who they are.

Having a child with a disability has taught me to really see people, to never overlook somebody because they have a disability. I’ve never been a person who would purposely treat someone badly because they’re different, and I’ve never really been uncomfortable around people who are different. But if I’m completely honest, before I had River, I’d never really thought about it. I’d never thought about, or fully understood the struggles people with disabilities face every day. I would never have intentionally been ignorant, but I guess I never really made an effort either. And also, I never really realized that every single person on this earth has something to offer and the potential to teach others. Down syndrome gave me that knowledge and I will never again overlook somebody because of physical or learning difficulties.

What Down syndrome didn’t do is make me see River as anything other than a little boy finding his way in the world. I don’t feel sad when he is with other children and I am faced with his differences and challenges, and I certainly don’t wish he could be more like them. All I see is River, my amazing little boy.

3. Strength.

Having River has unleashed a fierceness in me I never knew existed. I have a drive to do good. I’ve got a real ambition to raise awareness about Down syndrome, and to do my part towards squashing outdated and wrong perceptions. I want River’s life to show the world that being “different” can bring beauty to society.

What hasn’t happened is a need to hide away, feel embarrassed or on guard about people seeing my son. I’ve never once felt I can’t go somewhere and I’ve never dreaded people noticing River’s Down syndrome. I welcome questions. I want those questions and view them as an opportunity to educate. I don’t act any different to how I did with his older brother, other than feeling a need to teach people and help them open their eyes and minds through my son. We will never hide away from the world — we want to face it head on.

4. An amazing sibling.

I believe my first born son, Skyler, was an incredible child before River was born. I often say he was born with a gentle soul and I don’t believe there could have been a better brother for River. But I also believe River having Down syndrome will influence who Skyler becomes. I see him becoming someone who will be accepting of differences, less judgmental and who sees people for who they really are.

Down syndrome has not made me feel sorry for Skyler, or made me feel like as a sibling of a child with a disability he is missing out on a “normal” childhood. He is a really happy child and clearly adores his brother. We are a very close family, who laugh a lot, travel and have amazing experiences. Yes, I worry about Skyler having responsibilities regarding River when he is an adult, but I believe he will be up to the challenge. I truly believe he will benefit from having River as a brother just as much as River will benefit from having him.

5. The online Down syndrome community.

I am so grateful for the online Down syndrome community. These amazing group of parents was one of the best things that could have happened to me. Some of these parents are an inspiration and I can only hope I can offer a little something back along the way. Living overseas, in a place with no Down syndrome knowledge let alone a support group, could have been an incredibly lonely and isolating experience, but I have friends here and River gets to hang out with “typical” children where he is accepted for who he is. I honestly don’t feel excluded in any way, but life is different for us. I only know one other lady who has a daughter with Down syndrome and she is 22. I don’t know anyone with young children. Finding online groups has been a godsend to me, and meeting some amazing people has made our journey even more wonderful. There’s always someone to offer advice and support, and even though we are all different with different opinions, you can always find someone on the same page as you. I advise any parent who has a child with Down syndrome to get online, join support groups, and follow pages dedicated to people with Down syndrome. Seeing other people’s stories and seeing them do great things in the world brings me huge comfort and new confidence in our future.

What hasn’t happened is joining a group of parents who feel sorry for themselves. Out of all the people I have met, not one has ever felt sorry about having a child with Down syndrome. Of course there are bad days and we like to have a little moan, but no more so than any other parent group. Having a bad day and reaching out for support is not the same as regretting your situation. I’ve never met a more positive group of parents, and I personally believe having children with Down syndrome has taught these parents to love life a whole lot more.

6. A family unit.

Me and my husband Reagan have always been pretty tight, and even before River was born we had a happy family life. However since having River, it just seems so much stronger. It’s like he’s shown us how to really appreciate each other and see the beauty in our time together. We now realize what things are important, and what things don’t matter at all. Reagan and Skyler were my rock when we received River’s diagnosis, they kept my feet firmly in place and helped me see the positives. They reminded me he was still our River, and I will always be grateful to them for making the experience bearable. Actually, for making it beautiful. Reagan seemed to have accepted the diagnosis quickly, it didn’t seem to worry him in the slightest and I fell in love with him a whole lot more after seeing his love for his son.

Some statistics show there is a higher incidence of divorce among parents of children with disabilities. However, we didn’t find it such a struggle that it ripped us apart, and we didn’t resent each other. We talked to each other and shared our fears. We supported each other along the way. As a matter of fact, statistics also show when it comes to Down syndrome, the divorce rate is lower than average. Of course some marriages break up; it’s part of life.

7. The joy of celebrating the small things.

Having a child with Down syndrome has given us the gift of enjoying every moment and celebrating the smallest of things. River takes longer to reach his milestones and works hard to get there. He deserves for us to sit back and enjoy this, to congratulate him and celebrate every single little accomplishment. And we do! Me, Reagan and Skyler have been known to run around doing happy dances, all for something that to others may not seem to be a big deal. But for us, everything River does is a big deal, every little thing. And it doesn’t only go for River, I want Skyler to be happy, too, no matter what he accomplishes in life. River has taught us to slow down and not be in such a rush, to relax and enjoy family time instead of finding other things that need to be done. He has taught us to enjoy each other and not sweat the small things. It may sound totally cliché, but life really is too short and River has taught us to fill it with fun and laughter.

Having a child with Down syndrome has never once made me look at other families and wish we were more like them. Not once. I never look at families with “typical” children and wish that we didn’t have a child with a disability. River has created a special bond within our family and I don’t feel like we’re missing out on anything at all. To be honest, I’m more likely to think  others should try being more like us.

8. River.

Out of all the wonderful things Down syndrome has brought to our lives, nothing compares to River himself. Without Down syndrome there would be no him, and we like him a lot. He is feisty, determined, funny, mischievous, loving and completely gorgeous. We wouldn’t change a single thing about him, not one single chromosome. He has a twinkle in his eye and a smile that can light up a room. I believe my son is going to have a good life.

My son is happy and he is loved. At the end of the day, these are the only things that matter to me.

168
168
0
TOPICS
, , Contributor list
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.