Speaking Up About Prenatal Testing as Someone With Down Syndrome

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Hiya, I am Heidi Crowter. I am 21 years old and I was born with an extra chromosome!

In England, we’ve had a good stable government over the years, but now something seems terribly wrong to me. Our government has decided to roll out non-invasive prenatal testing (NIPT) on the National Health Service beginning in 2018. So as someone with Down syndrome, I didn’t want to sit at home and think about it on my own. No, I decided to go public and speak out.

In April of 2016 I did my first speech outside parliament which went viral. Then in June, on Brexit day, I went to London to do a video for the BBC to talk about the stereotypes of people with Down syndrome — which again went viral. This got picked up by Vic Minett who talked to me on BBC Radio CWR about the testing. Then in October last year I went back to London to do more protesting.

Sally Phillips (2nd best actress ever in my opinion) did a very light-hearted, upsetting , heart-wrenching documentary called, “A World Without Down’s Syndrome?” It was very sad for me. But despite the sadness, I had the confidence to get back up again and I was once again invited to speak about it on Radio CWR with Vic Minett.

In February of this year I went to Oxford to speak more about my life with Down syndrome, which is when I starting mingling with the stars! One of them is Sally Phillips and she is one of the most amazing people I have ever met. In March of this year I went back to London to do more advocacy. It was challenging as I got to speak with the people who are doing the testing. I asked them a question, “What is so offensive about Down syndrome, and have you considered how this makes me feel?”

As I was asking this question, I felt I had no strength to carry on. I broke down in tears as the need to justify my existence got to me. Tears were trickling down my face until I read these words in the Bible, “I praise you because I am fearfully and wonderfully made.”

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Alzheimer's Disease, the Silent Threat to My Son's Future With Down Syndrome

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Indulging in pizza with our family on a Friday night was pretty ordinary. Sharing with our then 20, 18, 15 and 10 year-olds that in six months they would have a new baby to welcome home — not so ordinary.

That very special night was full of excitement, disbelief, and joy for the gift of new life. Weeks later we came to learn our gift of a little boy also had Down syndrome. As a family, we spent many months trying to do our best to understand what it meant and wrap our heads around something we knew so little about. What we did not know for a few more years was the early- adult cognitive decline that can be associated with Down syndrome. Knowing this did not sit well with us.

Intellectual disability is one of many issues facing people with Down syndrome. Yet, as daunting and difficult as this can be to navigate through at times, it is merely one aspect. There is another force coming full speed ahead — straight at our son’s future — and it is Alzheimer’s disease. Many people with Down syndrome will develop the brain pathological changes of Alzheimer’s disease, but at a much earlier age.

Cognitive impairment in Down syndrome was once thought impossible to treat and too late to address. That is no longer the case. The purpose of cognition-funded research is to allow for those with Down syndrome to participate more successfully in school and to prevent the early onset of Alzheimer’s disease. This is a hope I have for my child with Down syndrome.

The science that once offered no answers has made breakthroughs and tremendous progress in a greater understanding of Down syndrome. Unprecedented human clinical trials are currently underway across the nation testing compounds to enhance cognitive function and researchers are racing against the clock to prevent the early onset of Alzheimer’s disease.

There is nothing I would like more than to allow myself the luxury to sit back and enjoy my child reaching his fullest potential in life, whatever that may be. Unfortunately I awake daily from this dream as it comes to an abrupt, sobering halt because reality rears its ugly head..

Only a mere $80 per person annually is allocated by the NIH for Down syndrome research and there are over 400,000 Americans with Down syndrome alone. This research is grossly underfunded.

• We rely heavily on private funding at this time and with the lack of awareness for this research — both in the general public and Down syndrome community — we seem to be leaving science on the table.

• In order to attain and secure the researchers, there must be the funds available to see their efforts through to completion. Otherwise, their precious time, passion and life commitment is for naught, and there are other projects for them to pursue. But not for us.

Like many parents, I have pursued paths I believed to be the best to ensure the brightest and healthiest future possible for my child. For me, this path included raising awareness as a volunteer for the LuMind Foundation. LuMind Foundation’s mission aligns with my deepest desire and dreams for my child’s future because these dreams do not include unnecessary limitations or Alzheimer’s disease.

I now know there is science out there that could make a difference in the life of my son both as he grows and develops into a young man, and in his adulthood. It is truly empowering, and hopeful, to realize our efforts today can make a difference in our children’s tomorrows.

There are few guarantees in many aspects of life, or science. But there are 400,000 individuals in the United States and 6 million worldwide with Down syndrome who I believe deserve to dream of a future filled with more possibilities. This dream for my son’s future sits squarely on my family’s shoulders and warrants our action to ensure that every avenue and every possibility is exhausted for a little boy who completes our family. Then, we might be able to sit comfortably with “what will be, will be.”

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My Advice About Milestones as a Mother of a Child With Down Syndrome

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Is he smiling yet?

Is he sleeping through the night yet?

Is he crawling yet?

Is he walking yet?

Is he talking yet?

Is he writing, counting to 100, reciting the alphabet, reading, standing on his head while riding a bike yet?

Little boy with Down syndrome playing with a yellow pirate wheel in a playset

Parenting, to me, seems to have turned into one big competition over whose child is the fastest at achieving things. I find it so demoralizing. I just want to be with my child and watch him grow. In my opinion, there is too much pressure on parents, and it can potentially take away the enjoyment of what I consider to be the best job in the world.

It’s wonderful to be proud of our children, and every parent has the right to brag about their achievements. But why compare? Our little humans are unique; they have their own talents, interests and personalities, and it’s OK for them to do things in their own time. Milestones shouldn’t be ignored, but I don’t believe they should be obsessed over or turned into a competition. It’s exhausting to worry that much. I want to follow my instincts and enjoy my babies when they’re little.

I want to see my children, really see them. I don’t want to base everything on a book, the internet or whatever everyone else’s child is doing. Even “experts” don’t know my children. But I do, and I refuse to compare them to their friends; they’re themselves and will do things whenever they are ready.

As adults, we need to believe that just because our children learn something a bit later, it’s not a result of our parenting. We’re not better parents if our kids walk or talk early, and we’re not worse if our children take their time. Have you ever met anyone as an adult and asked them at what age they learned to write their name? Or at what age they first fed themselves? In the grand scheme of things it isn’t important. The reality is all children will mature and develop at their own rates, and just because a child does something earlier it doesn’t mean they will achieve more later in life. I believe it’s the understanding, guidance, patience and love of their parents that will ensure they reach their full potential, not pressure and force. Pressure can hold children back, and make them feel they’re not good enough.

As a parent of a child with a disability, the best thing I ever did for myself and my son was to throw away the milestone charts. Neither of us needed that pressure, and it’s been wonderful to enjoy the moments when they happen. And they will happen, many of them already have, and many of them will when the time is right. The best bit of advice I can give to any new parent of a child with Down syndrome is to do the same.

I’ve learned that comparing my son to “typical” children is the worst thing I can do for my sanity. I understand many of us cling to the hope that our children can keep up with their peers and achieve the same things, but whether we want to admit it or not, our children will have delays. I’m not saying they can’t achieve things, I believe with my whole heart that my son, River, will achieve a lot in his life, but it may not be at the same time as everyone else. I’m sure there are things he will pick up easily, and things that will take time and perseverance, and even things we have to accept he won’t be able to do. I just want to enjoy every single achievement as it happens and not worry about the rest.

And why put myself through the added pressure of comparing my son with others who have Down syndrome? As an advocate, I’m always saying it’s OK to be unique, that as a society we need to accept differences and treat people equally. So why would I compare River to anybody else and wonder why he isn’t achieving the same things yet? He is River, and he can take his time and do things when he feels ready. I have total faith in him and his abilities, and I know if I offer him the right tools and believe in him, he’s going to do just fine. It’s not important to me that he does things before or on the same timeline as anyone else.

When River was born he seemed really strong despite having hypertonia, which is common in people with Down syndrome. He lifted his head off my chest and looked me in the eyes when he was only a few days old, and he rolled from back to side in his first weeks. I wonder if his strength threw people off and therefore he was not diagnosed until he was 6 months old. As River got older, his development slowed down and the gap between him and his peers became more noticeable. It was then I realized that me comparing him to other “typical” children and hoping he would develop the same way was doing him a huge disservice. He isn’t the same; he is different. And instead of trying to make him the same, and show the world he is the same as other children, I should be showing the world he is different and that’s OK. I want to show society that children with Down syndrome are different, and it’s beautiful and acceptable and nothing to be ashamed or afraid of.

As a parent, I need to take a step back and realize what’s really important — that my children are happy. If I believe in my children and encourage them, they will achieve everything they are meant to achieve. They will be good at some things and not at others, just like all people. Some things will come easy to them and some things will take hard work, just like all people. I’ve learned that by worrying about the things my children can’t do yet, I miss out on all the amazing things they are doing right now.

So my advice is to forget the milestones and love the moments.

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Finding 'Love in Every Stitch' Parenting My Child With Down Syndrome

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I am knitting. There. I’ve admitted it. After all these years, I am learning to knit. And I am loving it.

I’ve never been a fan, it’s fair to say. There were better things to do with my time; not that I had the time to do better things. I felt superior. That knitting was beneath me. Fanciful yet dull. Not cultured enough. I suppose I even looked down on those who spent time and money on this hobby. Believing them and their creations to be less than. Preferring shop-bought perfection over (what I saw as) imperfect and clumsy-looking. Frills and frou frou.

I was the same with houses. Give me a modern, easy to maintain, some say characterless, property over an older one with its quirky features and creaky floorboards any day.

I didn’t see the joy. The love in every stitch. The story in every room. All I knew was prejudice – towards knitting and crafting. Towards joy. Until last week.

In a few short months I have been truly humbled by some new friends. Their love and joy for this most ancient of crafts has made me realize how much I have been missing. I am coming to regard hand-crafted items I once would have been disdainful of as things of beauty. Things that have the power to make my heart sing, even. Love in every stitch.

So last week, I began to learn to knit. It did not start well. The woman in the shop asked me if I had chosen the right size needles. Did they have the right number on them? She obviously saw my hesitation and suggested I could go back and change them if they were the wrong ones.
I just nodded. I hadn’t the faintest idea what she meant. Her next question stumped me completely.

“What are you knitting? What’s it going to be?” Again, I had no idea. But in a moment, across the counter, I knew it didn’t matter. I knew that whatever I knitted would be beautiful. Unique. A one-off. It mattered not what it was, or how long it would take to finish – if ever. It was mine.

I paid, stuffed the needles and a ball of wool into my bag and left the store. Excited.

There’s a verse in the Bible I have always loved. “You knit me together in my mother’s womb… I am fearfully and wonderfully made.” — Psalm 139.

When my baby was born with Down syndrome, I had many other prejudices that needed taking down. Prejudices about people with Down syndrome. Ideas that they were somehow less than other people. I craved the “perfection” I saw in babies without an extra chromosome. I asked why my baby had been given the “wrong number.” I wondered what she would become. How would she turn out?

Others asked this question too. Some asked it before she was born. They said I could forget about her and try again. Hopefully get one with the right number. For all my prejudices about people with Down syndrome, this suggestion was abhorrent to me.

Five and a half years on and I know now she does not have the wrong number. There is no such thing. She has a different number. That is all. She is knitted together — fearfully and wonderfully made. And there is love in every stitch.

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I Missed World Down Syndrome Day Thanks to Parenting

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I am a father to a beautiful little girl with Down syndrome. Perhaps I should have taken time on World Down Syndrome Day to get out there and advocate for my child, raise awareness and make my voice heard. Except I’m writing this after World Down Syndrome Day — which was on March 21st — because much like many other parents of young children would know, things don’t always go according to plan.

March 21st is World Down Syndrome Day because the numbers associated with the date (3/21) refer to the 3 copies of the 21st chromosome, which is Trisomy 21 and otherwise known as Down syndrome. March 21st is a day when people with Down syndrome and those who are a part of their lives attempt to raise public awareness and advocate for inclusion — as well as take part in various events and activities throughout the world.

One thing you might have heard is that people with Down syndrome are “more alike than different” from anyone considered “typical.” My daughter loves to make you laugh, loves music, loves to sing and dance. She loves to color, to play dress up and loves to pretend. Much like any other typical kid, she can also get fussy, get upset and want to get her way whenever she can. She is a child and has the same traits and behaviors as any other child. We may go on a few more doctor’s visits during any given year, and her time-table for certain milestones may be a little different from other kids.

Something I seldom see posted about is what I refer to as “parenting awareness.” Ever since we first received the prenatal diagnosis our second daughter would be born with Down syndrome we encountered a variety of reactions: those who offered condolences or pity and those who didn’t think it was a big deal. As someone who has been a father to a typical daughter for 6 years, and a girl with Down syndrome for 4 years, I can say in my experience it has not been a big deal.

Yes, my youngest has faced challenges and will continue to do so throughout her life. As her father it’s my job to help raise her, protect her and prepare her the best I can for her future. But that is no different than what I do for my oldest daughter. People may think a parent of a child with Down syndrome is unhappy or struggling, and I consider this a misconception. The struggles I face are very much the same as anyone trying to raise two young kids. They both want things, both want your attention, both get upset for seemingly no reason. I believe it all comes with the territory of parenting, whether the child has a disability or not.

Dad posing with daughter with Down syndrome while she makes a silly face at the camera

Am I exhausted often? Of course I am. I have two girls with a lot of energy and I have troubles keeping up with both of them.

Do I worry about my children and their future? Of course I do. I am their father and I love them with all of my heart and want the best for them.

Am I unhappy? Not in the slightest. If you see me around and there isn’t a smile on my face, I may be thinking about the countless things I need to do or get done for the day/week/month.

Does any of this sound familiar? Sound like something you can relate to? Maybe my flavor is a little bit different than yours, but it’s all part of parenting. Much like the saying that people with Down syndrome are “more alike than different” from those considered “typical,” the same has been true in my parenting experience. I’m very much like you, I love my kids and they can be exhausting at times. But being their father is the most amazing and rewarding experience. I would have loved to write this for World Down Syndrome Day to help raise awareness, but I didn’t get the chance because I was a bit too busy with parenting.

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Ruby's Rainbow Helps Adults With Down Syndrome Pursue Higher Education

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Ruby’s Rainbow is a nonprofit that provides scholarships for adults with Down syndrome who want to pursue higher education.

Read the full transcript:

Ruby’s Rainbow Helps Adults With Down Syndrome Pursue Higher Education.

The nonprofit grants scholarships for post-secondary education, enrichment and vocational classes.

Learning doesn’t stop at high school and Ruby’s Rainbow wants to help each recipient reach their highest potential.

The nonprofit was inspired by Ruby Plachta, who was born with Down syndrome.

Recipients have been accepted into schools across the U.S. like George Mason University and California Institute of the Arts.

Recipient Dylan Kuehl was the first person with Down syndrome to attend The Evergreen State College.

“They’re doing all the things that I hope and dream for my own daughter.” – Liz Plachta, Founder of Ruby’s Rainbow

You can follow the journey of each scholarship recipient on Ruby’s site.

To learn more, visit rubysrainbow.org.

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