Inside: Big sister was so excited when little sister was born. Along the way, she realized something was not right. Somehow, she couldn’t understand why little sissy didn’t talk or interact with them when she was supposed to. She researched about Cornelia de Lange syndrome, the medical condition of her little sister, and presented it in class as a project. Then, she understood why she is delayed in her milestones.

Cornelia de Lange Syndrome: A Special Project in Honor of my Sister

by Aira Mae

My name is Aira Mae, just done grade 7, and Alyanna, my little sister is a special child with Cornelia de Lange syndrome, also known as CdLS.

Alyanna recently finished grade 3, and I come home every day from school to see my sister either playing with toys or watching nursery rhymes.

These days, I’ve been fixated with writing stories, usually between the fantasy and mystery genres. I adore writing, reading, and playing badminton in my spare time.

I wish to have a lot of jobs ( in the future ) right now, I simply can’t choose, perhaps I would like to become an author, a marine, or a detective. I’ve seen lots of shows about detectives, and though they may not be entirely true about certain things, I just enjoy watching them.

How do you describe your special sister?

Alyanna was born when I was 4 years old.

I didn’t quite remember what exactly happened and I don’t think I knew that she was special until she was 2. She is the first person in our family to have CdLS.

At the age of 9, I did a project on Cornelia de Lange syndrome and found some interesting results in my research. I completed it and did a presentation in school to my family and classmates.

Here are a few facts about what I found out:

1. Cornelia de Lange syndrome, named after Dr. Cornelia Catharina de Lange, who first described it in 1933, is a genetic disorder, meaning it is present at birth but not inherited.

2. Children with CdLS have distinctive facial features, which include long eyelashes, a small nose, and bushy eyebrows which are usually joined.

3. They usually grow and develop into adulthood but have a mental delay.

4. Some have other associated congenital disorders like heart problems, which my sister had.

Currently, Alyanna who is now 9, has a mindset of a 2-3-year-old, but she’s developing, though slowly.

Usually, she is filled with joy and doesn’t notice things happening until she’s captivated by them.

Some days she’ll be hostile and bite me on the shoulder when I attempt to carry her or pull my hair with a tight grip. It sucks and it’s really painful!

Alyanna likes music so I turn on the television to a reasonable volume and let her listen and watch.

She doesn’t like hugs that are too long or else she pulls away.

If I confiscate her toy because she may be too loud, she won’t be angry unless she really likes the toy. Instead, she follows me, possibly seeking to take the toy back. There are moments when Alyanna drops the toys on accident and she picks them up seconds later ( I taught her how to do that ).

She dislikes being in rooms for too long unless there’s someone in there with her, keeping her company.

In school, she’s made plenty of friends, and I think she really enjoys being in class since she comes home smiling and cheerful.

Alyanna has many unique characteristics. She has low levels of anxiety, is barely shy, and tends to be playful, she’s also full of energy and we love that in her.

She hasn’t been growing rapidly but to us, it’s just how kids with CdLS are.

What do you enjoy doing with Alyanna?

Sometimes she dances along, and also, when we do karate she attempts to kick and I try to lead her arm to a punching position.

 

Also, we read to her to not only help her learn but entertain her as well, although there are not very many children’s books at home, so I read aloud novels to her in funny and inaccurate accents.

What do you love about your sister?

Recently, Alyanna high-fived me and that was like her, but then my brother held out his hand to make Alyanna hold out her hand and then high-five her but she didn’t and walked away. I said to AJ ( my brother ) that she only high-fives me and he kept attempting to do it but she didn’t want to.

I enjoy moments when she looks at the book that I’m reading and pays attention to the pages and words, it’s like she’s actually reading it herself, and hopefully, she’ll be into books as much as I am, later in her life.

I also wish to see her be fascinated by other objects and scenery.

There are certain things we both like – we love to do art together. Alyanna keeps me company when I sketch or paint and she uses bingo markers to print paint dots on paper.

How does Alyanna communicate if she’s non-verbal?

It’s quite challenging for us to know what she wants but we just try our best to observe what she does and then we figure out eventually.

If she’s hungry, she’ll be angry and impatient.

If Alyanna is uncomfortable with something, she’ll run as far away from that thing, right then and there.

We are also really close as sisters, and when she is distressed, I’ll immediately think of reasons why she’s upset.

She’ll frequently look at the food I’m eating and if she looks interested, then I’ll feed her, unless it’s not safe for her to chew or swallow but that’s unlikely, I’ll just have to be careful and cautious.

Do you and your family have specific plans for your sister?

I haven’t really talked about this with my family but I feel like Alyanna at this very moment isn’t challenged by anything, but we’ll continue to help with her development along with her struggles in the future.

My mom and dad have been interviewed about how they care for Alyanna. Please read the posts below.

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Near the end of elementary for Alyanna, I think we’ll push harder and encourage her to be able to talk and let us know what she’s feeling.

At the moment, the plan we’re working on is communication, surely along the way she’ll learn a few things. Considering how long it took for Alyanna to walk on her own, I feel like it’ll be hard, but if Alyanna’s willing to try, then we’re willing to help.

We also have to deal with her hair pulling and biting, but we manage to calm her down to a certain point where she is happy and more playful.

She has been aggressive these few days, however, if we can conquer the easy part of dealing with her, I guarantee in the future we’ll even find a better solution.

Mostly, Alyanna is positive but sometimes she’s the opposite and we get through it by being the most gentle with her to soften her mood and there are other deeds we do to ensure that Alyanna is satisfied and grinning.

Does Alyanna have any therapies at present?

I’m actually not quite sure, but I do know that there was this woman that came to our house and played for a while with her, she was also checking in on how Alyanna was doing and acting. I watched her encourage my sister to do something like maybe push a button or sit still.

Alyanna frequently goes to school and I’m sure they do special teaching to her and her other special classmates. I’ve never observed her in school because I have classes too, yet, I see her content and untroubled afterward.

The best advice for families with special needs kids, including CdLS:

At any age of the child, there will be rough obstacles to dodge and tough decisions for you, your family and especially the child, and at times it’ll only get worse in your situation, but you need to know that if the child is still having the best moments with you then the child must be willing and grateful of you and that would already be enough for you to keep on going and trying.

Work with the people, technology, etc. to help with your situation because if you have even one thing and only one chance to try it, then use it, it’ll help but only so much and that’s why the child has an additional hero, you.

What is your most memorable experience with your sister?

One memory I have is when Alyanna was heading to school on the bus for the first time and she was getting lifted by a metal contraption. I could just imagine her being so scared and frightened by the sound and movement.

It made me happy though because although she was leaving home without me to accompany her and I would only see her a few hours later, it was so nice to know that in school she will be meeting other kids and somehow learn to socialize with them and eventually learn a thing or two about the things and places around her.

Alyanna- my little sister, my best friend

I know, she will be delayed in her milestones, but seeing her learn to walk, gives me hope that in the near future, Alyanna will be able to communicate with us more.

Most days, my sister is just happy watching Nursery rhymes on TV but annoys me by watching over my cellphone when I chat with my friends or when I play my favorite game, but no matter what, she will always be my favorite sister and her smile and random laughter will cheer us up, especially when she’s around.

 

In your family, how do siblings of your special child deal with them? What activities do they enjoy together?