She was the apple of her parents’ eyes for a long time until her brother came along. They have this special bond and they’re a team! Joanne is studying and far from home, but she always looks forward to returning on vacations, even during short breaks, because she knows that they can be the ” big sister, little brother ” duo and they could bond to the max during those times.
Learn how this big sister gives her undivided attention to her little buddy.
Tell us about yourself.
” My name is Joanne and I have one special brother named Nathan.
Currently, I am a student and see my brother only when I go home for the holidays. In my free time, I enjoy reading and watching YouTube videos.
I hope to become a Pediatrician and maybe specialize in Genetics so I can work with kids like my brother, who has both autism and Down syndrome.”
How old were you when Nathan was born and how did you know that he was special?
” Nathan was born when I was 11 years old. I knew that he had Down syndrome before he was born and my parents knew that there was a big chance of him being born with Downs due to both my mom’s age and her sister having Down syndrome, as well.
However, it wasn’t apparent that he had autism until he was around 4 years old. This was around the time when he lost all the words he knew and started developing stimming behaviors. For example, he loved rocking in a recliner we had and would flap his hands. “
Describe Nathan and tell us about his development.
“ Sometimes Nathan is very loving and other times he can be aggressive. It just depends on the day and how outside factors are affecting him.
I would ask him for a kiss or a hug and would happily oblige, but other times, he would pull my hair.
He tends to misbehave the most when he gets asked to do something he doesn’t want to do at all. For example, if he gets asked to hand someone the remote for the television, he might get upset and would literally stomp upstairs.
However, even things like this we appreciate and are proud of because it shows his growth in personality. He used to not react at all.
Something we are very proud of is that Nate is a very neat person. He takes off his shoes and socks after coming home from school and places them where the shoes belong.
If he sees a cellphone on the table and he knows who it belongs to, he will make sure to hand that to the specific person.
Even if the pillows, the remote, or the house phone are out of place, he will make sure to put them where they belong.
This started a couple of years ago but he has been generally neat overall. “
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How did you and your family react to the news that he was special?
” My family and I were very accepting of the fact that Nathan had Down syndrome. Again, my mom’s sister had Downs and I had visited her in the Philippines when I was younger. It was no surprise when Nathan was born.
In fact, I think it made us love him even more.”
Do you have any fears about Nathan’s future?
” Something that I feel scared of regarding Nate’s future is that people might not be as accepting of him once he is older.
Right now, at 13 years old, he can get away with almost anything because he is young enough and is cute. Once he is older, he will be expected to understand more, to be capable of more.
But what if he’s not? “
Does your family have specific plans for his future?
” Right now, there are no specific plans for Nathan’s future. We are just trying to help him grow and learn, then we will proceed from there.”
How did you and your family cope with the struggles of caring for him as he was growing up?
” My family had the normal struggles faced when taking care of a child, they just happened a lot later and for longer periods of time due to Nathan being slower mentally and physically.
But other than that, yes there were specific challenges related to him being him. He had to have a lot of therapies to get his abilities to where they are now and that takes time, money, and sacrifices.
However, Nathan is easy to relate to. It’s easy to relate to the feeling of not being able to do something that others find simple and then feeling so frustrated. I believe everyone has been there at some point.
Even the difficulty of being able to communicate with others is relatable.
That’s an issue I’ve encountered. I can’t speak Filipino and I am not able to communicate with my grandmother. But just like Nathan, I can get what I want to say across.”
What therapies or supports did Nathan have until now?
” I know that he had occupational, physical, and speech therapy throughout his life. He used to get one-on-one with these when he was a baby.
I remember they used the blue exercise ball and would lay him on his tummy on it. I don’t know why though, maybe to learn how to crawl?
Currently, he is attending a special school for 4 hours every day where they have music and art therapy as part of the program. The kids are also involved in ball games and exercises. They even have the Special Olympics and my Dad usually accompanies him there. It’s their bonding activity.
Nathan likewise does seasonal basketball and soccer. “
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Share with us how Nathan makes your family happy.
“ Nathan makes us happy with his interactions with the world around him.
He’s funny without realizing it. It just comes naturally, I guess.
I remember when my grandfather lived with us for a bit, Nathan would copy the way he walked with his hands behind his back.
Even when he says “No way,” to us we are happy because that’s
him communicating with us.
But my favorite is when he decides to show me his love out of nowhere. Sometimes he’ll pull me closer for a hug or a kiss or even just give me a smile.
He’s able to convey how much he loves me with that smile.”
What activities do you enjoy most with your brother?
” Nathan and I enjoy going to the park together. He loves to go on the swings and feel the wind on his face.
We also enjoy watching YouTube videos together, he likes to watch them over my shoulder.
But our two favorite activities are taking naps and taking snaps. “
If Nathan is non-verbal, so how do you know when he needs something?
” We share that sibling connection. Out of everyone in our family, I understand him the most.
Most times I just know what he is trying to say or I can anticipate what he needs before he is even able to ask for it.
Generally, since he doesn’t talk, he will grab someone’s hand and gesture it in the direction of what he wants. For example, if he finishes his dinner but wants more, he will grab my dad’s hand and drag it towards what he likes to eat more of.”
Best advice for siblings and parents on how to take care of a special sibling or child.
” I know it’s hard at times but don’t forget that a lot of people out there are willing to help you: your family, your friends, even your local community. Do your research into what events you can get your child into.
Don’t be afraid to talk to others at these events so that you can learn from their experiences and from their mistakes.”
Lastly, do you have any experience with Nathan that’s worth sharing?
“Once we went to an aquarium in Atlanta, Georgia. There were some penguins there and I guess that they’re very playful.
Nate was really young then. Maybe 4 years old? He was definitely in his stroller. He was looking to the side, watching some penguins on a little cliff.
One swam up from the opposite side and surprised him and he was so startled, he went, “AH!” It’s a fond memory that my whole family shares.”
Nathan is in good hands
Thank you, Joanne for sharing with everyone your wonderful and inspiring experiences and stories about your brother, Nathan.
I can definitely relate because your aunt who had Down syndrome is my sister, Pangga, to whom this website is dedicated.
Truly Nathan and the other members of our extended family who are special bring us immense joy in our day to day life.
I am sure, as well as your parents know, that Nathan is in good hands and you will take good care of him when we are not around anymore.
We are so proud and happy about your dedication to your brother.
Originally published: February 14, 2019 Updated: June 25, 2020
How does your special child connect with his siblings? What are the activities that they enjoy together? Please share your experiences with us.