Why I Told My Son About His Brother's Down Syndrome Diagnosis

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Within the Down syndrome online community I’ve heard the question, “How and when should I tell my children their sibling has Down syndrome?” There isn’t a right or wrong answer, but I am proud of the way we have handled this situation for our family.

We’re a pretty open book in our house, we talk about anything and everything. It has always been important to me my children feel they can ask me anything. I want me or my husband to be who they turn to when they need advice or guidance. So when we suspected River had Down syndrome, it never even crossed my mind maybe we shouldn’t tell his brother Skyler, who was then 3 1/2 years old. Skyler is part of our team, which meant we were in this together. The serious medical conversations or worries we had happened when he was in bed.

When we sat in the doctor’s surgery and River was diagnosed at 6 months old, Skyler was right there by our side. It might surprise people because he was so young, but we didn’t see receiving the diagnosis as a terrible occasion. I’d suspected River had Down syndrome for a while and we were at peace with it. Also, we felt Skyler could understand — to an extent — what was going on.

When we explained to Skyler his brother, River, had Down syndrome and what the diagnosis meant, it was surprisingly easy. Children seem to be amazingly accepting; for Skyler, his brother having Down syndrome was not much different from the fact he also had brown eyes. It just didn’t seem to matter. We explained Down syndrome in age-appropriate ways; we talked about differences, and that River would probably learn things a bit slower than other children. I then told Skyler how important his job was as River’s big brother, how he could help him and teach him, support him and cheer him on. These are all things I watch him do; he is a wonderful big brother and I couldn’t have asked for more.

Skyler is now 5 years old and it appears Down syndrome is still not a big deal to him, “Mum, River having Down syndrome is not a big deal. But if he’d been born a girl, now that would have been a problem!” He openly asks questions and loves to talk about River and what he is achieving. He also loves hearing about other children with Down syndrome and seeing pictures online. I wonder if it’s when we start to become adults that our attitudes change. I wonder if this is when we start to focus on differences, when we become prejudiced and keep our eyes closed to anyone who might be different. Children seem to care more about someone being their family or their friends. In my opinion, when children notice differences they don’t seem to hold them as important. To me, the innocence of children is quite remarkable. I hope by being open and honest with Skyler from the beginning, he’ll carry those qualities with him as he becomes a man.

Some people might not want to mention Down syndrome until their children are older because they don’t want them to see their sibling as “different.” They want the siblings to see their brother or sister and not the diagnosis. That’s OK. For me, personally, I wanted Skyler to know about Down syndrome because it is part of who River is.

I’ve never heard Skyler refer to his brother by the diagnosis, not once. To him, River is just River.

If I had not told Skyler his brother had Down syndrome, I think he would have worked it out for himself. That is something I didn’t want to happen, along with him hearing it from someone else at school or overhearing a conversation. Kids are more aware than we give them credit for, and I wanted to be the person who had this discussion with my son.

I think it would have been difficult if we were not open about River’s diagnosis. I’m so proud of who my son is, proud he has Down syndrome and I don’t see it as a negative. This is why we talk about it in our everyday life, because it is a part of our everyday life.

I think Skyler has benefited from having River as a brother even though he is only 5 years old. I imagine he will be an amazing grown-up. He is kind, patient, loving and accepting. He really does have a big heart. He is River’s biggest supporter, always the one cheering the loudest. River loves him so much. They have a bond I hope will always be there.

I don’t believe Skyler knowing his brother has Down syndrome has had negative implications. I imagine it is our children who are going to make this world a more accepting place, a place where being different is beautiful and not something negative. Hopefully, a place where being different isn’t a big deal. In my opinion it is through our children that we can create an inclusive society where everyone is exactly who they were meant to be, exactly who they want to be.

I would encourage you to talk to your children. Have open and honest discussions and allow them to ask questions without any judgment. Teach them differences are nothing to be afraid of, and nobody is superior to anyone else due to ability, race, religion or sexuality. And I believe this is equally valid for parents who don’t have children with disabilities — talk to your children. Allow them to participate in situations where they get to hang out with people who are different from them. Teach them about equality and acceptance. Change can happen if we all do our part.

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Why I Treasure the 'Messy Days' as Mother of a Child With Down Syndrome

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These are the messy years of motherhood for me.

Strips of paper with scribbles on them are strewn about the house. So are wet socks, dirty diapers, overly-loved books, and LEGOs.

My three vivacious children create such a constant eruption of clatter that the neighbor often comments on the chaos.

These may also be some of the most magical years of motherhood.

My type-A personality and independent spirit sometimes prevents me from fully embracing the mess that is motherhood. Still, I’m starting to realize my magical days may be numbered.

Our son, Troy, has Down syndrome.

We talk about Down syndrome often in passing, but it enjoys a backseat to the wildness of having three kids under 5 years old.

Troy’s typical twin brother, Hunter, seems immune to the term. Our baby girl, Cora, blissfully loves and hates Troy in any given moment throughout the day.

We live in a bubble. A safe and simple safe-space.

In our day-to-day life, no one seems to care about Down syndrome.

We love Troy; he loves us. It’s that simple.

But children grow, and life gets complicated. Down syndrome morphs into school placement, IEPs, LRE, FAPE, inclusion or exclusion. Kids question. Teachers negotiate. Parents complain. Our family bubble takes on a slow leak.

So this Mother’s Day I wish to cherish and immortalize these days.

I wish to remember these days as I fight to have Troy included in school, community, and work. The simple, messy days where everyone is ignorant to the brutal world that sometimes overtakes unique families like ours.

These are the days!

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Thinkstock photo by Yaruta.

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Fixing the System Against Down Syndrome Prenatal Testing

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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.”

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Thinkstock image by Tatiana Dyuvbanova

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

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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.

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When My Nonverbal Daughter With Down Syndrome Spoke Her First Sentence

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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.

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Learning to Let Go of My Child With Down Syndrome

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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.

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