What I’d like you know about my daughter with Down Syndrome

Down Syndrome Awareness: What I would like you to know about my daughter with Down syndrome

i’d like to introduce you to Ainsley. she is six years old. Ainsley loves to dance, swim, play with her dolls, run around with her friends, and wrestle with her brothers.  she loves roller coasters, making friends, and school. she attends kindergarten.  Ainsley has down syndrome. down syndrome doesn’t define her.  she is not a down syndrome girl.  she is a little girl, who just happens to have down syndrome.  really, she does anything and everything any other little girl her age might do!

Ainsley is one of my daughter’s best friends. i remember distinctly the first time we met Ainsley and her mom at the park years ago. since that time we have attended preK together and are now in kindergarten in the same class. Ainsley and her family have opened our hearts and taught us so much about friendship, love, and awareness. i am forever grateful for the things i have learned and the way that my heart has been touched by Ainsley! i recognize that having a best friend with Down syndrome is a gift not every child (or parent of that child) is blessed to experience. because of this, i wanted to share some of our experience as well as interview Ainsley’s mom with questions that would help others to understand different aspects of having a child with down syndrome.

Down Syndrome Awareness: What I would like you to know about my daughter with Down syndrome

now i’m sure this will embarrass her, but i’ll say it anyways – Ainsley’s mom is one of those people you meet that just ooze goodness. she is the most loving, kind, patient, thoughtful, and giving people i have ever met. but not in a way that makes you feel like a bad mom because she is invincible or perfect – just in a way that makes you grateful to be her friend and learn from her… human, but a really really awesome one.  as much as my daughter and i have been blessed by Ainsley, i have also been blessed to know her mom. she is a fierce advocate, but also a patient teacher. she is understanding of those who don’t know much about down syndrome, and an open book about her experiences. here are some of the things she shared in our interview….

What do you want people to know about Ainsley?

‘Ainsley is more alike than different. She is like most 6 year old girls. She loves to dance, to swim, to play with her dolls, to play princess dress up, to run around with her friends, to wrestle with her brothers. The differences she has aren’t really that different. They are not these incredible boundaries that set her apart from other kids her age.  She does have some delays, and it takes her a little longer to do things.  But a lot of kids have delays to a degree. The great thing is, a bit of patience goes a long way with this little girl.  Ainsley has a tremendous drive to succeed and while it does take her a little longer, she does eventually get there. I have two other kids- two boys- and I don’t give Ainsley any special treatment.  I treat her just how I would treat them. What I would say to others is to do the same.  Ainsley is just like any other 6 year old girl and I would like her to be treated as such.

In short, what I really want people to know about Ainsley is that Down syndrome doesn’t define her.  She is not a Down syndrome girl.  She is a little girl, who just happens to have Down syndrome.’

What is it like being a mom of a child with Down syndrome?

‘Being a mom to a child with DS is just like being a mom to any other kid. There are good days, amazing days, but also the difficult ones that leave you frustrated and discouraged.  Parenting is hard in general; being a mom is being a mom. With Ainsley, it might mean a little more patience, more research on therapies, or better time management juggling those therapies, maybe extra hours spent on homework.  But every mom has some kind of issue, some kind of puzzle they have to solve in their day to day’

What have been (or are) the hardest moments for you as a mom to Ainsley?

‘This week, Ainsley got to bring home the classroom bear and had to write and draw a picture about what they did together that day.  Ainsley came home over the top excited about having Corduroy and she wanted to sit down and draw her picture of them playing at the park.  She ended up getting frustrated because her picture wasn’t even close to what she wanted it to look like, and it was nowhere near the level of her peers.  She is 6, and fine motor activities are probably one of the hardest things for her to do.  While she has made tremendous advancements and tries very hard, she still cannot legible write her name; for most it would look like chicken scratch.  Its moments like these that break my heart.  She knew what she wanted to write, told me what she wanted to write, but despite all of her efforts she just couldn’t make it happen, because  due to her hypertonia, she doesn’t yet have the hand strength and coordination to make it happen.  There have been a lot of big things, but really it’s these little moments, where she knows that she is a little different that are the hardest for me.’

Down Syndrome Awareness: What I would like you to know about my daughter with Down syndrome

How do you balance family life and other children with a child who has special needs?

‘We try to treat Ainsley just like our other kids, but she does get a lot of extra attention when it comes to therapies and the extra time we have to spend to work with her on any number of things from homework to role playing what to do in a new situation (sometimes she’ll get extremely uncomfortable under unfamiliar circumstances).  It could be a very slippery slope making the day to day centered around Ainsley, and so we actively have to try to get out of that mindset.  First, in a lot of these situations, we try to incorporate the other kids as much as possible.  Ainsley learns more from her bothers than she does from us, so we make them the teachers, and include them as much as possible.  They enjoy it and it dilutes pure focus on Ainsley and makes it more about the family.

Second, we make a conscious effort to spend one on one time with our other two kids.  Owen, the oldest, gets a lot of individualized attention from me and my husband. Whether it is a mother-son date, or cubscouts, or staying up a little late to watch the world series, we make sure he as things that are just for him. And for the youngest, my mornings are all about me and him as the elders are in school.

In the end, what we try to do is to make sure each of our kids feels special, loved and a part of our family.  Each one of our kids brings something special to our family and we are blessed to have them in our lives’

How has having Ainsley as a sister shaped your boys?  

‘We have two boys Owen, the oldest, and Wyatt the younger.  Wyatt will be 3 in December -right now they are little buddies; they play together, learn from each other, and have fun together! Owen, has the biggest heart, a kind soul, and is a very compassionate boy.  He was only 18 months when Ainsley was born and to this day is still one of her biggest cheerleaders.  He grew up being a part of Ainsley’s therapies. He watched how difficult it was for her to do things which came easy to him, and at a young age was able to understand that not everyone does things at the same pace, that everyone has little differences and that that is okay. We hope he takes this notion with him for the rest of his life.  We are already seeing signs of this in him in how he acts with his peers – he is someone who is friends with everyone and very accepting of other kids no matter what the circumstance’

Down Syndrome Awareness: What I would like you to know about my daughter with Down syndrome

What are your hopes and dreams for Ainsley? 

‘My hope is to watch Ainsley walk across the stage at High School Graduation to receive her diploma with all her friends that she has grown up going to school with!  To have teachers, educators, and parents believe in her to be included through the school years. Long-term, I want to see her live a happy life and give back to the community!  I want her doing the things she loves to do.  We would love to see her go to college, get married and live on her own.’

What are your favorite moments, memories, and milestones with Ainsley? 

‘Ainsley has been a fighter since birth.  She was born at 30 weeks weighing only 3 pounds. On Christmas Eve 2008, after spending her first 98 days of life in the NICU we were told we would finally be able to bring our little girl home.  It was the greatest Christmas present ever.

Ainsley has essentially had a menu of therapies since she was 4 months old –physical, feeding, occupational, speech – it’s a long list.  She has to be taught how to do many things we take for granted.  It might take her a little longer to do them but she can and will do them.  Her walking for the first time was truly an amazing milestone.  Walking is millstone for all kids, but it was a long road for Ainsley to get there.  So when our little girl walked across the room for the first time at 2 years 8 months she had everyone in tears!

Another one of my favorite and most recent moments is when I realized Ainsley had a group of girlfriends!  I remember being scared when we were first told our daughter had Down syndrome that she wouldn’t have a group of friends, she wouldn’t be invited to playdates or birthday parties.  Last year, Ainsley started Transitional Kindergarten and she was fully mainstreamed.  I remember every day I would hold my breath as I sent Ainsley to school, praying that she had a wonderful day and had some friends.  As the weeks went on, I got to know the kids that Ainsley would come home talking about and of course this was the start of Aubrey’s and Ainsley’s friendship.   As the year went on, I watched Ainsley play with a group of girlfriends that truly accepted her for who she is.  They all would play together almost every day after school and she was invited to playdates, parties, and we ended up spending a lot of the summer together with swim playdates.  She even started dance class with some of the girls.  I know all parents worry about their kids, and whether or not they find a group of friends.  We too have that worry for our sons, but with Ainsley and the worry is hard to describe, it’s just greater.   She has serious boundaries in her speech and her physical capabilities, and it could be really easy for kids to just pass her by.  But we were and are truly blessed with this group of girls. It’s amazing watching all of these girls interact and truly love and accept Ainsley, and always brings tears to my eyes and so much joy to my heart!’

Princess Party Dress up

(photo from the princess party for all the TK friends!)

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as aubrey’s mom all i could want for her is to be kind, loving, and patient. aware yet accepting. for all of the times and ways i have tried to teach her this, i don’t think i will be able to claim any of it. Ainsley has changed her heart and made her a better person. as i watch them laugh and run and play together my heart is so full of gratitude for sweet Ainsley and her family. she has taught us another dimension of love and friendship.

this little group of girls in the photo above are just that – best friends. some are tall, some are short, some have curly hair, some have straight. some wanted to be belle and others cinderella (frozen was not out yet or this photo would look a bit different i’m sure lol). some play soccer, some do dance. while Down syndrome is something that makes Ainsley different, she has taught our girls that it is as irrelevant to her ability as a friend as those other differences i listed. they laugh together. they play together. they learn together. they make memories together. they hug saying good bye. they celebrate their differences.

How can parents teach their children about Down syndrome? What resources do they have? How can you teach your child to be a good friend to someone with Down syndrome?

parents lead by example – so set one of acceptance and understanding. here are some great resources to become knowledgeable about Down syndrome:

DS Information Alliance  |  National DS Society  |  National DS Congress

there are also amazing videos out there! watch them with your kids!

here are some of my favorites…

this first one is GREAT for young kids! this is the one that Ainsley’s mom shared with the preK and kindergarten classes to help them understand about Down syndrome. it is based off a book and real life friends isabelle and charlie. my favorite part is that it is a true story written by charlie – and the video is narrated by him! its adorable!

this is a great video for elementary – high school kids and talks about the bond between several sets of friends and gives lots of advice on how to be a friend to someone with Down syndrome

‘we are more alike than different’ this is a sampling of the short videos that were made for this campaign. it is a great message and features several adults with Down syndrome talking about their interests, hopes, lives, and dreams!

Down Syndrome Awareness: What I would like you to know about my daughter with Down syndrome

thank you for your friendship sweet Ainsley! we love you!

Comments

  1. so sweet…wonderful to read.

  2. What a lovely tribute to your friends, Mindy. Ainsley is a gorgeous girl and her mother sounds like she’s doing a great job with all of her children. I love hearing about happy families that work together.The Just Like You Down Syndrome video is my favorite. I’ve shown it to several groups of kids and they love it. For little ones I show the 3 minute preview version, older kids watch the 14 minute version. Mindy, thank you for being a mom that “gets it.”

  3. Monica Crumley says:

    Beautifully written article. Really captures everything I would want to say about my son as well. I’m blessed to have Laura Beth as my friend and Ds Mama “Sister”. Ainsley is a shining star, as is the whole family :-)

  4. Such a beautiful story and precious Ainsley is gorgeous that smile just melts my heart thank you for sharing I can’t wait to share this on my pages.

  5. Ainsley was a beautiful baby in the isolate when I cared for her as her nurse, and continues with that beauty inside and out. her parents are beautiful people too, and I will never forget that day when Ainsley left our unit. I’m blessed today to see her and her siblings at events in the community. my life has been enriched by Ainsley and her family. I believe there is a request that Disney have their next be a princess with DS. Ainsley is the perfect model to get their inspiration from.

    • Lisa thank you for your comment! You are an angel nurse on that unit and I know you are as loved by their family as they are to you!

  6. Joan Cardoza says:

    Ainsley’s Mommy and her Daddy have done a wonderful job! As a mother of a Down’s Child I understand all that you are going through. My son, A.J. is now 35 years old and still a true joy to me and our family! I am a friend of Ainsley’s grandmother and grandfather. Christy called right away after she was born and memories of a new born DS child came flowing back to me. It has been a different way of raising him, from raising the other 3 children, but I wouldn’t change it for the world.
    To him I am his Princess and best friend!
    Wonderful article and story of your ” Little Princess”……..so enjoyed reading it and plan to send it on to family and friends.
    You have a beautiful family. Joan

    • Joan – thank you for your comment! I’m sure you were a great support and resource for Ainsley’s family and grandmother. I love that you are A.J.’s princess and best friend!

  7. Thank you for sharing this Mindy! She is a sweet and familiar face that I remember from your posts. The part that got me the most was hearing her mom’s fears of dropping her daughter off to school. It brought back memories of reading about YOUR fears of dropping off due to allergies. And it reminded me of how much we are all struggling our own battles. And as teary moms sit in their cars after dropping off…we are all doing it together. All struggling, all wanting the best for our children, and really, all wanting to be known and accepted by those around us. What a beautiful and thoughtful friend you are to share their story here. I will walk away from your post with a little more compassion and a greater sense of understanding. What a blessing those kids have to grow up with amazing peers (who are being raised by amazing parents!).

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