Tag Archives: brother

What is it like to have a special needs sister? A 7 year old gives his opinion.

13 Jun

I wonder all the time what it is like growing up as the sibling of a special needs child. My 7 year old son, Kekoa, opened up and answered some questions about life with Oli.

What is the very first memory you have of Oli?
-“I think the first thing that I saw about Oli was that she was blind. Well that, she had ummm…she had no eyes and that was kind of creepy at first.”

Do you remember her getting her first pair of real looking eyes?
-“Ummm..I think I remember. I just saw online that she had the clear ones first.”

What do you want people to know about Oli?
-“I want people to know that just because she doesn’t have eyes, doesn’t mean that she doesn’t know what you’re saying. She understands whatever you say. You should talk to her normal.”

How does it make you feel if people stare at her or say mean things to her?
-“It makes me feel sad. It makes me feel like I’M the person being bullied by those people because she’s my sister.”

What would you say to those people?
-“She’s a normal person. She just doesn’t have eyes.”

What does it feel like to have a sister with a disability?
-“I’m just worried about people being mean to her. Sometimes I worry about her falling down and getting really hurt. I worry about her having to go to the hospital.”

Do you remember the first time Oli had a big seizure and had to be taken to the hospital by ambulance?
-“Yes. I remember daddy telling me to go upstairs. I remember wondering if she was going to be okay. Or was she not. I was just really worried that she wasn’t going to be okay that time.”

Do your friends ask you questions about Oli?
-“Yes. A bunch of times. They ask me like ‘Can she blink?’ I say yes. ‘Why does she have fake eyes?’ I say that people will accept her more because she looks like everyone else. I don’t think it’s very important to look like everyone else because everybody has differences and God just made us that way. That’s the way He wants us to be.”

Are you excited that she started talking again?
-“Yes. Very excited. I think that since she started talking, she’ll start doing other stuff too.”

What kind of stuff do you want her to be able to do?
-“I want her to be able to walk. To have lots of friends. I want her to be able to like do normal things like everybody. I want her to be able to play with me.”

Is it hard at home to have a special needs sister?
-“Sometimes. Because it’s hard to do stuff and concentrate when she’s crying.”

Is it hard because she has lots of therapy and doctor appointments?
-“Well no. Not really.”

Is it hard because it takes more time away from you, for mommy and daddy to help her?
-“Yes. You guys spend more time with Oli, helping her do things, than Ginger and I do. You guys just know more about her than we do. I like to help her. I like to help her walk. I like to hold her hand.”

If you had one wish for Oli, what would it be?
-“I would wish that she would be able to see. And that’s it. I just wish she could see because it would be easier for her.”

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WORLD AUTISM AWARENESS DAY!

2 Apr

autism awareness 2

April 2 is World Autism Awareness Day. Show your support by wearing blue. This is Kekoa and Ginger showing support for Oli.

Growing up with Oli

4 Feb

IMG_1076“You are here in order to enable the world to live more amply, with greater vision, with a finer spirit of hope and achievement. You are here to enrich the world.”
― Woodrow Wilson

I have often wondered what it is like to be a sibling of a child with a disability. I know it’s an adjustment for any child when a new baby is brought into the house. But, what about the child whose life is forever changed beyond just having another little person to live with. It is so much more than parents now being more preoccupied with feeding routines, frequent diaper changes and crying episodes. And it’s more than just knowing that you now have to share mommy and daddy’s attention with a new sister when, well lets face it, you probably weren’t all that thrilled about her joining you. Especially since you were an only child up until now.

Your life changes because now life is riding in the car for hours and then sitting in little rooms with crappy toys and being told to “be quiet” while you try to wait patiently. It’s waiting in these rooms several times a week when all you really want to do is go back home and play with your toys and watch the Cars movie…again. It’s sensing the atmosphere change in your house and feeling the weight of a sadness that you don’t understand but, seems to have followed your sister home from the hospital. The weight that seems to intensify after waiting in another one of those little rooms.

As you get older you start to notice that your sister, who you have waited to play with since she was born, never seems to get old enough to play like you. She doesn’t sit up very well when she does learn to sit up and then she can’t see when you try to show her your newest Lightening McQueen car or your new Hot Wheels race track. Mommy tells you to put your toys in her hands to show her things, but frankly this doesn’t make sense either because then she only puts your new toy in her mouth and ruins it with slobber. She never learns to move around the house which means mommy has to carry her every where. The words “Oli just needs more help” are lost on you when you just want to be picked up and carried around like before. You love your sister but, just don’t understand her. You ask questions and want to know why she is so different than you but, mommy’s explanations that God made her different don’t make sense. Why can’t the doctors just make her better. She is obviously sick and this is what doctors do. Why doesn’t she ever get any better? Why do they keep taking her to the doctor if they don’t fix her?

As you grow and change, learn your letters, learn to count and tie you shoes you try to show your sister so she can learn too. But, your attempts are to no avail and she doesn’t seem to get it. She won’t talk to you and now you are drifting farther and farther apart. She starts to do strange things like flap her arms, hum loudly and shake her head. You try to play like her to connect with her in some way but, what seems to amuse her is just boring to you.

You never give up though. You never give up trying to form that connection with her.

She is your sister despite your differences. Mommy and Daddy have always taught you to love her and help her and that is exactly what you do. Not so much out of a feeling of obligation but, because that is just who you are.

Kekoa you are such a special little boy. I love that you just love her and even though it’s been 5 years since everything in your life changed, it has never dampened your spirit or your love of your family and life. Please keep your kind heart and don’t pay any attention to people who may try to lead you down a different path.

You, my son, are going to change the world.

Life…it’s not always easy

28 Jan

“Life is loving so hard you inspire and become inspired to be the next level of the person you never knew.” -Unknown

After Oli’s bath that night I gave Kekoa his bath. He was so happy that we were home and he was especially happy to have his baby home. I got the cutest pictures of him with Oli that night.

Babykoababyoli1

He was so amazed that this little doll was real. She wiggled and cried. She would grasp his chubby finger if he placed it in her hand. He just kept staring at her tiny hands and feet.

After I took some pictures we went into the bathroom and I started filling the tub with water. When it was ready Kekoa climbed in and began to play in the warm water. I was just staring at my perfect little boy.

My little boy.

I cried the day I took Kekoa home from the hospital. I had to go out to Target and I started sobbing in the passenger seat on the way there. Seth looked over at me like I was crazy.

“What’s wrong? Why are you crying?”

“I don’t know. I’m just so afraid for him. I’m afraid we’re going to get into a car accident and he’s going to get hurt. I’m afraid someone will want to look at him and accidentally sneeze on him and he will get sick.”

“I’m afraid someone will want to touch my new baby.”

“I just want to protect him from the world.” I sobbed.

I remember all those fears while I watch my son take his bath. I am overwhelmed again by my fierce instinct to protect him.

I want to protect him from this challenging and unfair life that now lays before him.

I want to protect him from the bullies at school that will tease him because his sister is different.

I don’t want him to ever see people staring at Oli. Watching his little face as he tries to comprehend why people are looking at his little baby and then turning away with pity on their faces.

Watching him try to understand the question that will inevitably come.

What is wrong with her?

I just love him so much and I want to give him everything.

I realize now, that I just wanted to give him everything that was easy.

Life is not always easy.

She gave me a new meaning to that phrase.

It no longer meant that life wasn’t easy because the money was a little tight that month. Or that it wasn’t easy because I might not be able to afford the new car I wanted or the bigger house with a bigger yard.

It used to mean that life was hard because I might not get what I want.

Now it was hard because I began to see how small and insignificant this all was.

It was hard because I now realized all that I had taken for granted and just thought I was entitled to.

It was hard because I really wanted my old life back.

I didn’t want to think about all of the challenges that now faced my family.

I wanted to remain where I was, even if it meant I would never grow.

I wanted my son’s life to be easy.

I could only look at him and cry. I just looked at him and repeated the 2 words that had become my mantra to my children.

I’m sorry.

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