When a School Excluded My Daughter With Down Syndrome

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We had one of those hard parenting moments recently.

KC will start preschool this year. The thought alone terrifies me a bit, but I’ve worked hard to face the reality this day is fast approaching and my best response is to be prepared. We’ve researched many schools and talked to every educator in KC’s life about what they feel her best option for school is. We’ve received a unanimous response, “inclusive preschool.” We’ve worried about how KC’s petite stature will work out in a large group setting, but we’ve also watched her interact and keep up beautifully with her peers on Sunday mornings at church. So, we made a list of our best options with top of the list being KC attending the same private school her big sisters attended for Preschool. We talked with the big girls’ former teacher who was on board and very excited. She loved and taught our big girls so well it really seemed like an obvious choice. We aren’t aware of any other kids with disabilities going to this school, therefore, we came up with a plan to ensure her whole team was on board and we didn’t require any extra accommodations from the private school. We developed a grand plan and felt sure when we met with the school and introduced KC and our plan, they’d be glad to give it a go.

KC currently has a home teacher who was on board with going to visit KC in the classroom weekly to work on anything her new teacher thought KC could use extra help with. Her therapists were on board with us coming after her school day to keep in step with her peers. Her private PT was on board to come visit the school at playtime and even before the school year actually starts to make sure KC could safely navigate the playground. Her soon to be new teacher was thrilled to have the opportunity to have taught all three of our girls. A lot of thought and planning went into making sure this would be a successful first year of school and a lot of people were on board to make sure it would not require extra on the part of the private school. We excitedly sent an email to the private school Kindergarten director letting them know we are interested in sending our daughter to their school this year and we would love to sit down and talk it through to see how we all thought it would work out. We mentioned she has Down syndrome and she’s small, but that was pretty much all of the description we sent.

Sadly, we never had the opportunity to sit down and have that conversation. The director called my husband soon after he sent the email to explain they aren’t equipped to take kids with IEP’s or kids who require anything above speech therapy. No, they didn’t ask if KC even needed anything above speech therapy or if she even needed speech therapy. They also let us know their class size is too big for our child. We’ve sent two kids there already, we are well aware of class sizes and confused at how they knew classes are too big for someone they’d never met.  They offered some other school recommendations for “Down syndrome kids.”

Maybe not surprising at this point, but their suggestions were all schools specifically for special education.

I cried a lot of ugly tears that day and then I cried some more the next. How can a kid they never asked a single question about be discouraged from attending their school? How can recommendations be made about what would be best for someone they’ve never laid eyes on?

My heart hurt. Part of me wanted to enroll her anyhow just to prove a point, but the majority of me wanted to keep her as far away as possible from the situation. I think about the educators I know, educators who are  so passionate about their jobs and the kids they teach and the opportunity to work alongside involved parents to grow their kids. I wonder how often they are denied the opportunity to have an amazing kid like KC in their classroom because the moment someone hears a diagnosis they turn their minds and their hearts from the possibility that a child with a diagnosis could benefit from a typical classroom environment. Or better yet, provide benefit to a typical classroom. How can this be right? How can my child be excluded from a school without so much as an interview? How can having Down syndrome alone be a red flag? My heart is broken. It’s broken for KC, it’s broken for us, it’s broken for the teacher that couldn’t wait to teach KC, it’s broken for the kids and staff who will miss out on a great kid. It’s also broken for the many other families out there whose child has been rejected or excluded without a fair opportunity. I’m sorry this happens. I’m sorry you guys have felt this hurt. It’s not right and it shouldn’t happen. We try so hard to make the right choices for our children and it’s disappointing when our kids are unfairly judged.

My biggest questions though, how can we use this experience? How can this be turned into good? How can our experience grow and educate others? I think sharing our experience is the best response. I think people have no idea situations like this occur. I hope people realize having a diagnosis doesn’t make you identical to everyone else with that diagnosis. Down syndrome is a similarity, not a uniformity. I want KC as well as other prospective students to be viewed as individuals by learning institutions and not by their diagnosis so they can find the best fit for education.

We feel strongly this year KC will thrive in an inclusive environment and that’s a choice we will constantly need to evaluate. I hate that so much thought and planning went into making all of this possible only to be shot down immediately by administration. As I’m reminded by close friends and family, we believe the God who created our sweet girl has a plan for her and while it may be different from our plans, it’s surely a better plan that anything I’m capable of concocting. I talked with another private school the next day who said all of the things you’d hope a school would say. “We’ve had the opportunity to have many different types of friends at our school and we are thrilled to meet you guys to see if this is the right place.” I talked with another preschool director who said she’s not had a kid with Down syndrome in her classes before but she’s more than willing to meet and she feels like she has a lot to offer KC in a classroom. Maybe one will be a great fit, maybe neither will but I’m at least thankful for those that are open to the conversation. I’m also thankful our journey with KC constantly grows me and reminds me of God’s love for us. The “noes” are painful but I can rest assured the “yeses” will be worth the wait and even the struggle. I know I’ll soon be sharing about the school she ends up going to and about both the challenges and the benefits of an inclusive setting. I know this journey will continue to have low moments as well as high ones.

KC is is smart, silly, capable girl and I know she will excel in the right environment.

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The Moments When I See How Far My Daughter With Down Syndrome Has Come

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The day this little girl was born, I cried. I cried because my 31-week preemie was here safely. Then I cried because my husband walked in and told me her diagnosis. We didn’t expect a little bundle with Down syndrome, but we received one of the cutest.

I have other children too, and so many times I get frustrated when a stranger points out my “special” daughter (I do believe, however, that both of my daughters are special), and starts asking questions about her. There was one stranger at Costco, years ago, who stopped me and asked about all of my other children before they asked about Tullie and what her needs were. I so appreciated that, and I think my other children did too, but today, I’m going to talk about Tullie because she did something today that caught my eye, and it wasn’t anything unusual.

We were cleaning up breakfast this morning, and I told Tullie to grab her math book and blocks and start her school work. I turned around from the sink and saw Tullie grab her math book and then reach up on her tiptoes for the box of blocks for her counting. She then sat down at the table, opened up her book and did the next two pages. Drew the lines between her numbers to separate her columns because we are doing carrying in addition, added each column, did each problem, then turned the page, read the word problems and solved them.

It’s not an amazing feat. It’s not life-changing or earth-shattering. She didn’t solve any world problems or settle an argument between her siblings; she simply did her math work on her own.

These last few weeks, I have noticed how much she has grown, how mature she has gotten. She still loves “Frozen” and Shopkins and will happily play dress-up with anyone, but she has also grown so much more independent, sweet, kind, loving and is developing into a very beautiful young lady.

When babies are born, we are aware that they will grow, but it’s amazing that they do grow. When those babies who are “special” are born, we may assume we will be “stuck” in “baby” forever. Everything will be slow. There are too many unknowns, and those first hours, days and years can be intimidating because everything may actually be slower and overwhelming and hard and you’re dealing with the unexpected, but then we look up from the kitchen sink one day and notice a young lady, who served herself breakfast, dressed herself, put on her glasses, brushed her teeth, is reading everything in sight, cleaned her room, dusted, looks both ways to cross the street, can gather eggs from the chicken coop and will happily empty the dishwasher and put everything away in its place.

When we receive the unexpected we may expect the worst; we don’t often expect the best. When Tullie showed up the first thing that popped in my head was, “She’s gonna live with us forever.” Now, I don’t think I’d mind that too much. She is the sweetest and most giving.

Tullie has taught me patience. She has taught me how to be gracious. She has taught me how to be kind. She has taught me how to love. She has taught me how to accept life as it comes. She has taught me how to respect others. She has taught me the Gospel. I wish that everyone got a Tullie. I think the world would be kinder and more gentle.

Many times in those early years, people told me, “Jesus knows what He’s doing putting Tullie with you,” and when I heard that I would sneer in my heart. I’d get mad because it seemed cliche to say. But, I believe He did. He knew what He was doing. He knew what our family needed. He knew I would need hugs from a sweet girl when I had tears in my eyes from grief. He knew I would need to see her gleeful smile when she was sitting up independently at 10 months old while I sat and watched and played with her while I grieved her brother. He knew I would need her belly laughs and giggles while we rode in the car. He knew I needed her quick wit and snuggles while I wept more tears of loss. Jesus knew. He knew what our family would need.

So, today, I looked up and my eyes saw a very beautiful, sweet young lady, and she happens to be ours. For that, I feel very fortunate.

Follow this journey on Seeing Glory.

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This Mom Has Created Over 490 Napkin Drawings for Her Daughter With Down Syndrome

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This mom drew over 490 napkin drawings for her daughter with down syndrome, and now they’re on display.

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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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