Big sister, Little brother…..he has Down Syndrome and Autism!

Big sister, little brother.. he has Down syndrome and autism

She was the apple of her parents’ eyes for a long time until her brother came along.

Growing up with working parents, Joanne became a bookworm and would just soak in books instead of playing by herself while waiting for her mom to wake up after a restful sleep from night duty.

Due to her love for reading, school became a means for her to excel.

Being an only child back then with no constant playmates, she longed for a brother or a sister.

And then, Nathan came along.

Since then, her brother has become her playmate and source of joy for the longest time.

Now that Joanne is finished with university and far from home, she always looks forward to returning home on vacations, even during short breaks, because she knows that they can be the ” big sister, little brother ” team and they could bond to the max during  that time.

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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 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 2 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.

Little brother has Down syndrome and autism” 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. “

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 12 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 on 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 arts therapy as part of the program. The kids are also involved in ball games and exercises.

Nathan likewise  does seasonal basketball and soccer. “

Share with us how Nathan makes your family happy.

Big sister, little brother..he has Down syndrome and autism

” 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. “

You said Nathan is non-verbal, so how do you know if 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.”

What advice can you give to 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.”

Thank you, Joanne for sharing to 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, 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 of your dedication to your brother.

How does your special child connect with his siblings? What are the activities that they enjoy together? Please share your experiences with us.

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Author: Marita

I am a doctor by profession who had several years of clinical practice as a Pediatrician and General Practitioner. At present, I work as a Clinical Research Assistant in a large university. Pangga ta ikaw remembers fondly a loved one who passed away and making her demise more meaningful. Supporting children with special needs in our hometown in the Philippines through Special Education is our main focus and through this website, we also aim at making everyone realize that special kids need our love and support.

29 thoughts on “Big sister, Little brother…..he has Down Syndrome and Autism!”

  1. What a touching blog. I really love how this dialogue is filled with faith and hope. I believe that Nathan and Joanne will have a great future together as siblings. The conclusion is even better as the author spoke of knowing their aunt. It’s great to know that this is a dedication, and I believe that the deceased would be very proud of this author.

    I am very, very touched by this article. Great job on this!

  2. Aw. This is so beautiful! Even though special kids take a whole lot to care and tend for, they’re are definitely worth our all. They bring us joy in an immeasurable way. I’ve always thought kids with autism and down syndrome always have a special ability that sets them apart. I hope Nathan gets verbal soon. Send my love to him

    1. We do hope Nate can express himself verbally, too. Slowly, he is getting there.

      Thanks for the well wishes and for the love.

      Marita

  3. This is a heart touching blog and I really love this type of story. I have read this article carefully. Every dialogue of this article is so impressive and dedicated. It focuses on the expression of family love and family ties. Really good job and wish best. Overall great experience for me.

  4. Dear Marita,

    Thanks for sharing the caring and loving story. 

    Joanne is a very special big sister and she is going to take good care of her little brother, Nathan. I see that she is determined to help kids like Nathan with autism and Down Syndrome.

    Joanne is going to be a pediatrician and to specialize in Genetics. With rapid development in medical technology, in the near future the genetic diseases like autism and Down Syndrome can be cured. Let’s work together to find cure for the diseases.

    Regards

    Anthony

    1. Hi Anthony,

      Happy to hear of your support for Joanne’s academic goals and eventually caring for Nathan as they age.

      Researches could hopefully find ways to control these genetic diseases/syndrome. For the meantime, families just need to support these kids with ongoing therapies and special education.

      Have a good day!

      Marita

  5. Oh! This is a sweet article.

    I am glad to read the topic about love between the siblings. There are many autistic  babies around us.I want to say we have to accept them as they are. I think Down syndrome kids are also very lovable, just like Nathan.

    Thanks for this awesome interview!

    1. Glad that you liked the interview.

      Kids with Down syndrome and autism definitely need the family’s unwavering support.

      Thanks.

      Marita

  6. Such a heartwarming read! So proud of you, Joanne! I wish my family could you see you all so often. I always remember that sweet, naughty smile of Nathan and his loving pinch in my arm (maybe his way of getting my attention).

    I hope to see you someday discovering breakthrough in Genetics. No doubt because you are an intelligent young lady.
    Please hug Nathan for us and tell him we love him so much!

    Love,
    Auntie Odette

  7. This is a really touching story and experience about Nathan. It’s really good for someone with autism to have caring families to have good interactive activities with. This is a very great writeup. I will love to read more of your post so am bookmarking your website. This is really helpful. 

  8. This is a very heartwarming blog. It brings me to touch with my humanity. I like the care and affection she shows towards her brother. People living with down syndrome are human too and they should be shown the same love and affection. It’s a really nice work you’re doing spreading the message of love, thanks so much.

    warm regards

    1. Hi Louis,

      Definitely people with Down syndrome and all special kids deserve our unconditional love and support. It starts within the family, just like how Joanne is treating her brother.

      Your appreciation touched my heart.

      God bless,

      Marita

  9. I cannot imagine what it would be like to have to deal with a special needs brother. I give you all the credit in the world.I really, really like your website. I love taking the initiative.When you talk about sharing a sibling connection, I have seen this many times. I myself am an only child but I have seen brothers and sisters who definitely have a “psychic connection”.I love that you share all of the positive experiences that you and your family have had in caring for your brother!Do you actually have programs in your area that help you care for your brother?If so that is great to hear. I worked with somebody whose son was autistic and as he became older it just became too much for her.It’s good that you have a whole family that accepts and are willing to care for your brother.

    1. Hi Tom,

      Family support is really vital for our special kids, like Nathan. Indeed he is very lucky to have Joanne as a sister who is all out in loving him and enjoying his company.

      Nathan has been having lots of support and therapies since he was a baby until now that he’s 12.

      Grateful for your inspiring comments.

      Marita

  10. Hi there, this is really a touching story. 

    Joanne started her whole childhood life hoping for a brother, maybe she was lonely  playing by herself. With Nathan’s arrival, everything changed and they have been having fun together.

    Nice to hear that the big sister is so loving to her special little brother.

  11. what an inspiring story. I really love your blog and I have bookmarked it.  Stories like this challenge my perception. Joannes is my heroine in this story. Imagine she calls him a ” special” brother. Wow. I remember in Africa we treat such kids with disdain and scarcely find any thing positive in them. But Joannes is full of positives. Thank you for sharing 

    1. Hi Paschal,

      Sorry to hear that in Africa, special kids are treated differently. Such a pity.

      I hope my website reaches out to these people so I can touch their hearts and they become open to loving unconditionally and supporting our special kids.

      Thanks for your nice comments. Joanne will be happy hearing them.

      Marita

  12. This is interesting and touching. Around this time last year was when I attended a presentation about Down sydrome. It was an interesting topic. It will be very better if decriminalization is eradicated concerning this special people.

    I love your presentation. Please, i would love to ask if this Downs is hereditary. 

    Another one is, can this be corrected before the victim will be born?

    1. I don’t understand why special people would be treated as criminals, is that what you mean?

      It was nice of you to attend that presentation about Down syndrome, I hope it opened your eyes about how they develop and that they need everyone’s love and support.

      Yes, Down syndrome is hereditary and other factors are contributory as well, like old age of the mom when she gets pregnant.

      It cannot be corrected unfortunately, but in some countries, the parents are given the choice to abort the fetus if found with the syndrome, which personally, I am against killing the unborn child.

      Taking care of these special kids have lots of struggles but the love that they give in return to the family is indescribable.

      God bless,

      Marita

  13. It is such a painful topic the down syndrome and autism. I can tell you from first hand experience as I have a third cousin who has been struggling with autism from his first day. I can say It has been painful watching him grow, as he couldn’t do things perfectly like most his mates, and I would like to know how this disease comes about, is it a genetic mutation or something. Best regards.

    1. There are no specific causes of Down syndrome or autism  but like you said, they can be genetic or run in families.

      They can grow up to their best self with support and love from families and people around them. They may develop slowly, but eventually they can somehow live productive lives.

      We just have to acknowledge their capabilities in whatever level they are now and hope that with proper support they can thrive.

      Is your third cousin getting any support at all?

      Marita

  14. My heart goes out to Nathan, Joanne and their parents for showing so much courage in the face of such a challenging situation. Children like Nathan need a lot of love from us all in order to cope with Autism and Down Syndrome. I think Nathan is special not because of his condition, but because autistic children have been known to possess certain gifts or talents at an amazingly high level. I’m sure the family will discover this in time. Please continue to support Nate as best as you could and don’t be afraid to ask for help every now and then.

    1. Thanks for your support to the family of Nathan and Joanne and most especially for believing in Nate’s capabilities. He is getting lots of support up until today.

      God bless,

      Marita

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