Archive | February, 2014

A blind little girl and her deaf dog.

27 Feb

He picked us, we did not pick him.

I’ve heard people say that about their pets before. I’ve always thought it was kind of hookey.

Until it happened to me.

I was sitting on a chair in my living room, watching Oli’s physical therapist Cat work with her, when our lives were changed unexpectedly by fate.

Cat and I were making small conversation about random things, as Oli practiced balancing on one foot.

She suddenly looked up at me and said “Hey! I forgot to tell you something! We got a new dog! Well, not really. We’re fostering a dog. His name is Ziggy and he’s deaf and missing one eye.”

“Really? What happened to him?” I asked, not really thinking anything about it, but interested in hearing what happened to this poor dog.

“They don’t really know. The woman who rescued him got him from a shelter in Dallas. He was scheduled to be put to sleep the next day. I guess he was in a different shelter as a puppy, a no kill shelter, where he had his eye removed because it was punctured. He was adopted out of that shelter only to be surrendered to a kill shelter later. Lynn rescued him from there and then I got him as a foster. Do you want to see a picture?” She asked, pulling out her phone.

“Sure.” I replied, still interested, but really NOT interested. I didn’t want a dog. I didn’t need a dog. WE didn’t need a dog. I was very firm in my rule that we were NOT going to get a dog until AFTER we rented a house with a yard. Right now we lived in a small apartment.

I started repeating this rule of mine as I looked at his picture.

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Oh no. I started to get that feeling where I know something, but I don’t really want to know something.

I got the feeling that this dog was supposed to come to us.

“Oh he’s cute!”

Of course I didn’t tell her all of that other stuff. I didn’t need her thinking I was a weirdo.

“So does he have any potential adopters?” I asked nonchalantly.

“He’s had a couple of home visits. Nothing for sure yet. Lynn has to make the final decision on where he goes.”

“Oh yeah. The family that he goes to has to have a yard I’m sure right? Since he’s deaf, he needs a yard to be able to run around in without a leash. Right?” I ask slyly.

“I’m sure. She’s going to be very picky about who he goes to. Especially since he was surrendered. He needs the perfect forever home. I’m sure she’ll want the family to have a yard. Why?”
I see she’s starting to get suspicious.

“No reason. Well. He’s really cute and you know…kind of blind. A little bit. And deaf. I bet we’d be a really good family. But we don’t need a dog. We CAN’T have a dog yet. So…yeah. Nevermind.”

“Well I can ask Lynn about the yard if you want.” She volunteers.

“Okay. If you want. No big deal. I was just curious.” I try to blow it off and hide my disappointment, knowing full well that no rescuer is going to give this dog to a family who lives in an apartment.

And that was the end of our conversation.

For 2 weeks I never mentioned him and neither did she. I honestly thought that he had probably been adopted right away and maintained my “No dog stance” and my firm belief that if something is meant to be it will be.

If he was supposed to come to us? He would.

A few weeks later I got a text from Cat that read “Hey! Can I bring Ziggy over to meet the kids? I think he would like that.”

I responded “Of course. They would love that.”

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As soon as he walked up the stairs I was already in love with him. He was so calm and so gentle. He just walked around the living room and then laid down on the floor like that was exactly where he belonged.

Once she arrived I asked her “Soooooo…did Ziggy find a home yet?”

“No! He didn’t! And I forgot to ask Lynn about you guys! Let me text her right now.”

She sent the text, telling Lynn about my family and Oli.

Once Oli arrived home I KNEW without a doubt that this dog had chosen my family. That he had chosen my daughter.

I knew that it WAS meant to be and that I wasn’t crazy.
Well, at least not about this.

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I knew that he was meant to be Oli’s dog and he was meant to help her in any way that he could.

I knew that I wanted him to be trained as her service dog.

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Ziggy went home with Cat that afternoon and Lynn called me later that night.

“Well he’s actually promised to go to another family, but I just don’t think that they’re the right family for him. He didn’t wag his tail the entire home visit! I just don’t have a good feeling about it. As soon as Cat told me about your family and about Oli, I just knew that this is what he is supposed to do. He’s meant to help a child. When I had him we walked by a school playground one day and he just stopped and started staring at the children. He was so content just watching them. Once I heard that you wanted to train him as a service dog I knew that you were his family.”

Tears filled my eyes as I heard the exact words that had been playing in my head ever since I saw his picture.

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Ziggy, Cat, and Lynn came over for a home visit the next day and he’s been with us ever since.

Ziggy became Shaka.

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How did this all happen?

How did I look at a picture and KNOW without a doubt, that this was my dog?

How did he bond so quickly with Oli? How did she bond so quickly with him?

It was like they had known each other in a past life and had been searching for one another ever since.

It sounds crazy, but it’s true!

He had gone from wandering the streets of Dallas with a punctured eye, deaf, without a home, to being rescued by one shelter, adopted, surrendered to another shelter, be scheduled to die, rescued, driven to Austin, and ended up being fostered by one of my very good friends.

Why did she just happen to ask me if she could bring him over on that particular day?

If she’d asked just one day later he would have gone to the other family.

If any of these things had happened just a few days later… we would not have him.

This was the very first night that he spent with us. It's as if they are saying to each other  "Yay! You made it home!"

This was the very first night that he spent with us.
It’s as if they are saying to each other
“Yay! I found you!”

OLI would not have him.

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It was as if fate had interjected along all of our paths to ensure that this dog came home.

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He has never belonged anywhere else.

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I know that Oli and Shaka were meant to be in each others lives.

I know that, without a shadow of a doubt, she was meant to love him and he was meant to love and help her.

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I wonder if they share a unique bond because she can’t see him and he can’t hear her.

I wonder if they communicate on a level that I will never understand.

When’s she’s sick, like she is today, he never leaves her side.

I have watched them both for over 4 hours now and he has not budged.

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He has been her constant, loving friend since he first met her.

He has not left her.

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Something tells me…that he never will.

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My Special Needs Mother Hat

25 Feb

I talk a lot about my journey to obtain my special needs mother hat. I don’t know why I use this term. I guess it just gives me a good descriptive picture in my head and explains a major role I play.

To me, this hat looks different than a mother hat. My mother hat fit well the first time I put it on. It was easy to wear, simple, elegant, and light. It was beautiful from the beginning and did not tear easily. When it did, I could take it off at night and stitch up any holes it acquired during the day. My stitching was never loose, came apart or was crooked. It always came back together nicely. It rarely fell off and never seemed heavy. I was proud to wear it and frequently showed it off. I enjoyed this new hat tremendously and was very reluctant to turn it in for my special needs mother hat.

When I got this hat it was WAY too big. It fell off all of the time. Sometimes it just blew right off my head. In the beginning I would forget that I had it and a big gust of wind would come along and POOF! Gone. I would have to go chasing it down the street. Sometimes I threw it to the floor in a moment of rage, frustration, or grief. And sometimes I just tried to leave it on the counter at home. I tried to pretend that I didn’t have it. It was extremely heavy. It had all kinds of straps, buckles, and ties attached to it that I couldn’t figure out. It had random flowers on it with names that I couldn’t pronounce. It was uncomfortable and became worn out looking. Rips and tears began to decorate the sides and no matter how hard I tried to stitch it up, my stitching never fixed the holes. They were loose, crooked and simply came apart by an unexpected tug in the wrong way. The whole hat would just fall apart. I would carry my hat in pieces back home and painstakingly try to put it all back together. At first it seemed destined to be big, ugly, uncomfortable, and prone to making me feel like an outsider. It seemed nobody had a hat that looked like mine.

After I wore it for a while, I began to notice other mothers whose hats looked like mine. They were worn and tattered, but had been repaired with beautiful hand crafted stitching and appeared loved and cherished. These mothers looked at me in my hat and smiled a knowing smile and pointed to their heads. “See. I’m proud of my hat. It may appear complicated and worn out to you, but to me it’s beautiful. Your hat will be beautiful too one day.”

Slowly I began to notice new things about this hat that I hated at first. I was learning to pronounce the names of the flowers on it and figuring out the buckles and straps. It wasn’t so big anymore and no longer blew unexpectedly off my head. It began to fit better as each day I grew a little more confident in my role. Every once in a while I still throw it to the floor, but now my reasons are different. It still gets ripped and torn, but I am learning to sew it back up and now my stitches hold it together. It doesn’t fall apart so easily and my stitches are straighter and stronger. I’ve learned to love each and every rip, tear, crease, and stain on my hat because each one has a story. A moment in time and a memory of where I have been and what I have gone through. It isn’t so uncomfortable now and it doesn’t make me feel like an outsider. Now it makes me feel like part of a group. A group of mothers with special hats and special roles that we love and feel honored to have. I no longer try to hide my hat. I walk out of my house each day with my head held up high, proud to show off my journey with my special needs mother hat.

As different as this hat was from the mother hat that I began with, it has begun to resemble the first quite unexpectedly. Yes, it still has all of those rips and tears. It still has those strange flowers on it, but the basics of the hat…are like the first.

What holds one together, holds the other. The hats are both made from the same fabric and are sewn with the same thread. What makes my special needs mother hat strong, is what made my mother hat strong to begin with.

The love I have for my children.

The two hats are not all that different.

Some days my special needs mother hat becomes too heavy or feels too broken to wear. I just can’t pick it up.
So instead? I pick up my first hat.

My mother hat.

As long as I remember that I am still a mother… I know that it’s okay. I know that I don’t have to feel guilty if I have a day or a moment that I just don’t want to wear my special needs mother hat.

When I feel overwhelmed, overtired, overworked, underappreciated,…I just remember that sometimes?

It’s okay to just be a mom first.

The Power of Touch: Learning Tactile Communication

24 Feb

The power of touch.

What does that mean?
Touch.
For many different people, it can mean many different things. Really it depends on what the person’s touch memories are. These are memories that mostly come from childhood.

Were you hugged and kissed a lot? Were your parents constantly rubbing your head or holding your hand? Were they more distant? Did they frown on public displays of affection? Were you abused as a child? Were you hospitalized a lot? Do you associate touch with warmth and love? Or do you associate it with pain and fear?

For many people it can bring up a flood of memories when I say the word “touch”.
Couple the word “touch” with the word “power” and it can bring up strong memories for some.
Some good. Some bad.

For many special needs children, touch can be scary. Especially if they are visually impaired. Most of our kids spend at least some of their childhood in and out of hospitals.
A lot of times doctors don’t know what’s going on with them medically and our tiny babies must be poked, prodded, stuck, pinched, measured, x-rayed, scanned, biopsied, operated on, casted, molded, fit, helmeted…. The list is endless.

This must be terrifying for them.

Even the most compassionate nurse, technician, or doctor may unavoidably traumatize our child as we stand there feeling helpless and scared ourselves.

Add to the mix a visual or hearing impairment or both…and our child is experiencing negative touch inside a black hole, strange instruments assaulting them from every direction.

Touch? Will then become the enemy.
A thing to pull away from and fear.

As we leave the hospital, confident that once we are home with them we can make it all better with a little snuggle, we may be met with resistance.
Which leaves parents even more devastated.

So how do we teach our children to begin to trust us and learn that touch is good?
That touch can be calming and loving. How do we teach them to begin to explore their world though a different form, a more positive form, of powerful touch? How do we teach a non verbal child that touch can be a way to communicate with another person? That touch has power.

This was the topic of a conference that I recently attended at the Texas School for the Blind and Visually Impaired.

Before I go on I must state that I AM NOT a teacher of the visually impaired.
I DO NOT work for TSBVI nor represent them or their employees in any way.
The opinions and experiences contained in this blog are strictly my own.
I am only stating what I learned in this workshop and my experiences as a mother of a blind child who is non verbal and has other disabilities.

Okay. Whew. That was awkward.
Moving on.

When Oli was first born there were two things that were emphasized constantly.

1. Carry her around everywhere.
“Attach that baby to your body as if you had grown a second head. If you go? She goes.”
Okay. I carried her around for 9 months inside my body. It shouldn’t be that hard to carry her outside it. And it wasn’t. For about a month. And then do you know what happened? She got bigger! How dare she! So it became a bigger deal. But I did it and I carried her around faithfully for a very long time. Now she’s almost 7 sooooo… You know what’s funny? I STILL carry her around sometimes. That girl can walk! So now I get yelled at for carrying her. “You need to let that girl walk! Don’t you carry her!” Ah well… Whadaya gonna do right?! Old habits and all that.

2. You need to talk to her.
“Constantly. Talk about this and that and the other thing. Talk about all of the things all of the time. Talk. Talk. Talk.”
I’ll let you in on a hard to believe secret.
I wasn’t always as talkative as I am now.
No really! I promise! I used to be quiet!! Ask my mom!
But when you give birth unexpectedly to a blind child, you adapt.
So I became a talker.
Another little secret.
I don’t just do things a little bit.
Oh no. I do them all the way and around the block, down the street, running, racing. I do them until everyone wishes that I would stop doing them and then I do them some more because…
what do THEY know?!
I’m going to do all of the things.

I talked to that baby morning and night. I explained and described, sang, whispered, made up voices, chanted, hummed…if you could do it with your voice? I did it.
All the time.

Do you know what they told me at this conference? Almost 7 years later.

That I don’t need to talk so much.

Ummmmm….

Excuse me? I don’t think I heard that right.

Apparently I had heard right. I talk too much.

Shocking, I know!

When you start to use touch with a visually impaired child and pair it with too much auditory information the child becomes overwhelmed and cannot focus on what you are trying to teach.

If I’m trying to show Oli a cup and she’s holding it I can guarantee you, if I’m trying to teach her about that cup, I’m going to tell her it’s yellow and has a picture of a flower on it and that she drinks juice from it and that the lid is green and that it has a straw.

But I don’t NEED to tell her all of these things.
I just need to say “cup”. That’s it.

Here we get into the nitty gritty information from the conference.
Here we talk about touch.

Don’t touch your child right away. Observe your child.

Man this is confusing right?! First I tell you we’re going to talk about how to touch your child and then I tell you not to touch them! Just wait. Next I’m going to tell you not to talk to them either.
Stay with me here guys.
I’ll explain. I promise.

Do not talk.
Do not touch.
Just watch.
As you watch them think about these words…
“I notice…”
and
“I wonder…”

Notice that every movement your child makes may have meaning to him or her. It may be some kind of communication. And then wonder what they are trying to say.

For example, one of the teachers noticed that Oli flaps her hand against the side of her face sometimes. She wondered if maybe that movement had meaning. Maybe she was replaying a particular movement from a song they sung at school or something that she had played with earlier.
I had just always assumed that it was a stim, but maybe it’s not. Maybe it means something to Oli.
I had never thought of that before.

Watch to see if the child is open to talking to you.

Nope. Don’t do it. Don’t touch them yet.
We’re getting there. Trust me.

First of all you need to check your own agenda. Are you wanting to force some information and touch on a child that is clearly showing that he/she is not open to talking with you? Did they turn away from you? (Oli does this a lot. Especially when she knows someone is going to make her work.) Or is the child displaying an open posture with relaxed hands (or as relaxed as that child’s may get)?

Second, greet the child. This does not have to start with words.

Yep. Don’t touch them yet. Don’t talk to them either. Even in greeting.

I know!
This is just crazy stuff right?!
Really though. You don’t want to overwhelm them if they have shown an interest in talking with you.

I’ll say it again.

This does not have to start with words.

You may just go up to the child and place your forearm or hand next to theirs. You can also offer them an open hand and place your hand under his/hers.
Go slowly. Go calmly. Even if you say nothing and don’t even touch the child, they know you’re there.
(Trust me. I’ve had many, many experiences with my daughter where I walk in the room and she knows I’m there immediately. It’s impossible to sneak around her.)
Afterwards you can say “Hi. It’s mommy.”

Then you wait.
DO NOT GRAB THE CHILD’S HAND.
Let the child decide whether or not they want to say hi.
Limit the auditory communication and just focus on touch so you do not overwhelm them.

Tactile following.

Yay!!! We get to touch them!!

Finally.

This is to do be done all hand UNDER hand. NEVER hand OVER hand.
You are just going to have your hands under theirs.
Don’t anticipate their movements or cues, but get them from the child.
The best way to keep any conversation going is by asking the person you’re talking to questions about their topic.
That’s exactly what you are going to do with the child.
By following the movements of their hands with your own, you are “talking” about THEIR topic.
Not your own.
You are just following or imitating their hand movements.
When we follow them we are attending to their conversation topic.
If we do this hand over hand the child is not having the experience because we are doing it FOR THEM.
This is not their topic.
If the child will not allow your hands under theirs that’s fine. Don’t push it.
Just leave your forearm against theirs and mimic their movement. They will still feel your movements. You are still talking with them. Eventually they may allow you under their hands.

When you introduce an object to explore and play with, do the exact same thing.
Offer the object with an open palm, allowing the child to touch or grab it as they wish.
Then as they explore it, put your hand near or under theirs and follow the movement. If they tap? You tap. If they bang? You bang.

Tactile Modeling or Sharing

NOW we can talk. A little bit. A VERY little bit.

This is where you are sharing something with the child.
You are trying to get them to “watch” what you are doing with their hands.
This does not mean you are grabbing their hands and forcing them.
You are still maintaining your hands under theirs and are starting to direct the conversation to let them know something about you.

For example, if you are telling me about a movie with a tornado in it and you go on and on about this tornado and I’m asking all of the questions about the tornado “Have you been in a tornado? Have you ever seen one close up? Did you watch that other movie about the tornado?” eventually I’m going to want to tell you about my experience in a tornado.
(I really have a good story about a tornado.)

This is how a conversation works. Both parties give and take from the dialogue.
This is what we want to do with our non verbal kids with touch.
This is also where we begin to label objects with words.
Not up there in observing or following. In the sharing stage.
Make sure to use simple consistent labels, Don’t use too many words.

We take the topic that the child is interested in and we begin to change it and show them a different perspective.

For example:
With Oli, the common topic with her hands is clapping.
My god that girl loves to clap. Clap. Clap. Clap. Clap. All. Day. Long.
So as I observed and then followed her, she wanted to clap. I followed her clapping for a while and then I began to rub my hand together back and forth. Well, she was NOT going to talk about that. She wanted to clap! So she began clapping her hands again. I followed her hands for a bit and then began to rub them together again.

Once again she didn’t want to talk about that! She could care less about my experience in the tornado. She wanted to talk about herself!

I again followed her clapping and then began to rub them together again.

She stopped.

And then she hung on to my hands and followed along while I rubbed them together!

And then she went back to clapping.
Because my girl is nothing if not stubborn.

But as we repeated this over and over she started to want to talk about what I was talking about and began following my hands more and more.

Finally, as I rubbed them together, she stuck her little hands in between mine and felt the inside of my hands as I moved them back and forth.

And then she did something amazing.

She pulled her hands away and STARTED RUBBING THEM TOGETHER!!

She rubbed them quickly and then smiled HUGE and clapped her hands, but this time like “Yes! I see what you’re saying girlfriend!! I want to talk about your tornado!!”

It was awesome!!
She was so excited and it was so beautiful to watch as that lighbulb went off inside her head.
She understood.
She knew what I was saying.

It was beautiful and I was so SO very proud of her.
I wore a smile the rest of the day with that memory and the knowledge that my girl was beginning to understand that touch meant communication for her.

That her touch had power.

I am so very grateful for these moments with my daughter.

Through all of the sadness and the heartache and that continuous guilt that what I do for her is never enough…

That I am never enough…

There is a light in the darkness and it is moments like these when I know…

that I am.

If you would like to see a good example of tactile following, there is a video below of Seth and Oli demonstrating it with a shaky can. A toy that she normally would have thrown over her shoulder in about 10 seconds. Because Seth was playing with her she was engaged for at least 5 minutes. She probably would have played longer, had we more time.

Here is the thing about our kids and toys. They do not have to play with the toy correctly. The same with objects. They do not have to use them appropriately. Just go with it. Just play however they want to play and follow their lead. Don’t feel guilty or bad if they are like my daughter and lick the hairbrush instead of brushing their hair. They are exploring and learning and it’s fine. Don’t worry about it. There is plenty of time to teach them what a hairbrush is for. And if they never learn it or use it appropriately? Then it’s still fine. They are who they are and will be how they will be. Regardless of the amount of time we waste trying to force them to be different. Just love them and play with them and enjoy them. It will be how it’s going to be and I promise you it will be fine.

It will be MORE than fine.

It will be amazing.

Instead of talking about it, let me show you.

20 Feb

Since I have been sharing so much lately about my son Kekoa and his recent sadness surrounding Oli and her seizures, I wanted to tell you about their relationship.

I could tell you about the moment when he first met her. The time that he immediately closed his eyes and started walking around the room with his hands out in front of him.

I could tell you that for some reason, my son knew that she was blind, even though he was only 17 months old and no one had told him.

I could tell you how he immediately fell in love with her and kissed her whenever given the opportunity.

I could tell you how much he loves her and protects her. How he defends her and supports her. How he believes in her and admires her.

I could tell you a lot.

Instead?

I’d like to show you…

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Kekoa and Oliana in June 2007 070

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K & O June 14

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K & O trailer3

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That was only a fraction of their first year together.

6 years later? Not a lot has changed.

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That’s why it really is a pretty big deal.

She’s already blind so it doesn’t really matter.

19 Feb

Last week’s episode with Oli going to the hospital was really difficult on Kekoa. More difficult than I even really realized.

We all know that she is fine.
We all know that a child’s life with seizures can be unpredictable and scary.
We know that her seizures are treatable and that she returns back to normal fairly quickly.
We know that there are interventions that can be done and medications that can be adjusted and doctors that can be called.
WE know that.

But does a child?

I mentioned in my blog last week that Kekoa was very tearful the day after the ER visit.
The following day at school for him was no better.

I picked him up after school last Monday in the car and was met with a boy who had pain and sorrow written all over his sweet face.

“Hey buddy. Are you okay?” I asked him as he climbed into the front seat.

“Yeah.” His one word response was nowhere near convincing.

“Are you sure? Do you want to talk about it?”

“No. It’s nothing.” Nope. I’m still not buying it.

I pull the car forward and ease into the street, heading away from the school. I stay quiet for a few minutes, hoping that he’ll warm up and decide to talk. When we’re almost home, I try again.

“Kekoa, the last few days have been really tough. I know it was hard for you and scary. I’m here if you want to talk about it.” I sneak a quick glance at his face to see if my words register anything with him.

They do.

I see tears pooling in his eyes as he hardens his face, trying to be strong. Trying not to cry.

It breaks my heart. I wish he would just talk to me.

Finally. FINALLY he does.

“Mom? Some kids at school weren’t very nice when I told them that Oli had to go to the hospital yesterday. I told this one girl about it and she said ‘So. Seizures are no big deal. Cancer is REALLY bad.’ Why would she say that?”

I can feel the heat creeping up the back of my neck as my face begins to burn.

He’s not done. “And then she said ‘Well she’s already blind so it doesn’t really matter that she had to go the hospital.'” A tear leaks down his cheek.

I’m too stunned and too mad to cry. I want to turn the car around and drive back to the school. I want to find out who said it and where she lives and I want to drive to her house and corner her parents…

I was SO mad.

The little irrational voice in my head urged me to do all of those things, but fortunately the rational voice in my head is usually louder. Plus, what I would say next would set an example for my son on how to deal with situations like these.

“Kekoa she just doesn’t understand. That’s why she said those things. She’s a kid and she just doesn’t have any idea what life with Oli is like.” I tried to steady my voice as we pulled into the garage. “If you’ve never had a special needs sister or seen a seizure or the paramedics race into your living room…you just don’t know.”

What else could I say to him?

As we walked into the house my mind was racing a million miles a minute trying to figure out how I could fix this unfortunate and hurtful day for my son.

He has been through so much. So much.

THIS. This very situation was the reason that when Oli was exactly 3 days old I gave my son, who was only 17 months old at the time, a bath and promptly sat on the side of the tube bawling my eyes out. I cried and I apologized to my toddler because I knew then that situations like these would happen. I knew it and I just sat there, tears streaming down my face, with my son looking up at me with confusion on his face as I just repeated “I’m sorry. I’m so sorry.” Over and over again.

Now 6 years later, the moment had come. I apologized again.

This time was different though.

This time I didn’t apologize for Oli. I didn’t feel sorry for him because he had a special needs sister that would make his life more difficult at times. Which I had done before.

Yes. I’ll admit it.

I don’t feel like that anymore. Obviously.

This time I apologized for the words of a little girl who probably had no idea how much it hurt my son or myself.

She had no idea that by stating that it was “no big deal because she was already blind” she was devaluing my daughter as a person. That she was reducing her to something less than the incredible little girl that she is.

At least in my eyes, that’s what those words meant.

She probably had no idea that she was being a bully.

I immediately sent my friend a text. She has a daughter in Oli’s class who also has seizures and she has a daughter just a year younger than Kekoa.

I rattled off what had happened and asked if Kekoa could talk to her daughter. She said yes.

“Kekoa if you want you can talk to Chloe. She completely understands. Her sister has really bad seizures and has to go to the hospital a lot.”

“Maybe later mom.” He just looked defeated.

After dinner I typed an email to his teacher, who was not at school that day, but in a conference.

She responded immediately, apologizing for what had happened, and offered to speak to the guidance counselor. She also suggested that maybe the guidance counselor could speak to the whole class.

I told her how much I appreciated her help and also said that I’d be more than happy to come and speak about different disabilities and siblings.

It’s been a week now.

Kekoa is mostly back to normal.

Mostly.

I’m trying really hard to support him and help him however I can.

I’ve enrolled him in a workshop for siblings of special needs children that will be in May.

Oli’s occupational therapist at hippotherapy has offered to give him therapeutic riding lessons for relaxation and stress reduction. He starts on Thursday and is beyond excited.

He’s always had his own individual sports and time alone with me or Seth.

I can just see it all building up though.

I can see the pressure and the weight that being part of Oli’s life can bring. We just came off of a particularly bad stretch with her. Our days were filled with her screaming, biting and scratching herself, banging her head, and being completely inconsolable for weeks. Then the seizures…

I feel it and I see it and I know it’s there weighing him down…

but I’m powerless to either fix it or take it away.

Right now I’m just trying to do what feels right and praying that we are going to go down the right path with him.

I really believe that siblings of special needs kids can be greatly affected by it all. The good and the bad.

I know that he is an amazingly supportive, kind, compassionate, loving, generous little boy who is always looking to help the next person in need.

And I know that he is this way because of Oli.

But his soft heart can be broken so very easily.

Especially by a few words spoken without any thought by someone who just simply doesn’t know.

My husband mentioned to Kekoa that maybe that little girl knew someone who had died from cancer so to her, cancer IS really bad.

Cancer IS really bad. Especially when it happens to someone you love.

So are seizures. Especially when they are happening to someone you love.

It was a very good point.

Kekoa considered it and it seemed to sit well with him.

It’s all relative. We only know what we know.

I just hope that in the end I can give him enough opportunities to support him and validate that no matter what, his feelings are his own. No one can argue them or make him feel like they are any less than what they are.

Stating how you really feel is one of the ultimate truths in this life.

I want him to know that no one can take that away.

TEAM OLI

17 Feb

I’m going to start posting the races that we do together for Team Oli. The 5K’s, 10K’s, and triathlons.

I’m doing it mostly to keep a diary for me, to remember all of the fun we had doing these together. Another reason I wanted to start this is to share with other people some fun pictures, video’s, inspiring moments, accomplishments, or just plain funny stories from the many races that we do together.

I also want other people to be able to experience what this has really done for Oli.

What it has done for my ENTIRE family.

When we started “we” was just Oli and myself. Now it is my husband Seth, my son Kekoa, my daughter Ginger, Oli and I, and most recently our dog Shaka. The “Baby Genius” as his trainer calls him. Shaka is a one year old rescue pup that is completely deaf and missing one eye. He is currently in training to become Oli’s service dog.

He's so cute.

He’s so cute.

It has been so much fun doing these races with my entire family. It also has been so incredibly humbling and inspiring to watch Oli as she sometimes struggles to walk across the finish line. She has never given up, never cried, never sat down. She may stumble, lose her balance, and reach out for me, but she just keeps trying.

Every single time.

She has walked across every finish line since we started back in August 2013. She has gone from timidly walking to confindently blazing across that line clapping for herself. It’s been amazing.

I wish I would have thought about doing this sooner. But, better late than never.

Our race for today Sunday, February 16, 2014 was down in San Antonio, TX at the McNay Art Museum. This was the 60th anniversary of the museum.

The race start.

The race start.

This race was especially nice because not only was the course on the road, it didn’t start until 10am.

SCORE!

Ginger, Oli, and I? We’re not morning people.

Once we got down there everyone was ready to go.

Shaka couldn't decide whether or not he wanted to lick Oli's face or eat her pop tart.

Shaka couldn’t decide whether or not he wanted to lick Oli’s face or eat her pop tart.

We had plans for Kekoa to run all of the race. Well. Run/Walk. He had trouble finding his confidence and rhythm at the beginning and was a bit tearful. After he got going he was fine. He rode a little bit in the stroller…WITH THE OTHER TWO KIDS!! (Yeah. My husband is awesome.) He was on his feet for most of it though.

He was exhausted, but he did it.

Looking tired Kekoa.

Looking tired Kekoa.

Now you're looking good. Look at that nice, poofy hair!

Now you’re looking good. Look at that nice, poofy hair!

Even little Ginger ran a lot of it!

I think one of my favorite parts, besides the finish, was watching Oli walk the middle part of the race. This was the first race that she walked in the middle.

She’s at the point now where she doesn’t just want to walk at the very end, but wants to walk throughout the race. She is able to go for longer distances and more frequently so we are more than happy to encourage her. Plus?
She’s HEAVY! It’s nice to let her out!

She just smiles and bops her head along, letting us lead the way. She’s so unbelievable adorable.

My MOST favorite part, as always, is watching my beautiful girl cross the finish line of any race.
She has gone from a tiny little baby with an uncertain future to a confident young lady with a future full of dreams.

The sky is the limit.

The whole family.

The whole family.

Because of these races Oli will never let her disabilities define her, nor let them determine what she can or cannot do.

This girl can do ANYTHING!

It makes me really sad mom.

9 Feb

I got the call that I am always terrified to get when I’m away from Oli.

“Shannon. Something is wrong with Oli. I think I need to call an ambulance.”

My heart fell to the floor and stayed there until she was wheeled into the ER on a stretcher and I could see her.

“What do you mean? What’s wrong?” I asked as my heart raced, but my mind cleared.

“Well she’s breathing really funny. Like holding her breath and I can’t keep her awake. Here. Listen.” My mom, who had been home with her while I took my other two kids to a horse vaulting stable, put the phone up to Oli’s lips.
I hear a strange grunting sound coming from my daughter.

“She’s been doing this for a while now and it’s getting worse. When she falls asleep it’s better, but as soon as she stirs she does it again.

“Mom. Listen. Lift up her shirt. Can you see her ribs or her sternum as she breathes? Does it look like she’s sucking in?”

My mom quickly checks. “No. No I don’t see that.”

“Okay good. What about her lips? Are they pink or do they look blue?”

“They’re really pale. I just don’t feel right about this. I feel like something is really wrong with her. She just keeps falling asleep.”

“Mom. Do you feel like you should call an ambulance?” I ask calmly. Going into more nurse mode at this point than mother mode.

“I’m not sure. Maybe. Something is wrong with her breathing.” She answers. I can hear the fear in her voice.

“Okay. If there is even a question that maybe you should, I need you to call. I am at least an hour away and by the time I get there to check her, things could have gone dramatically downhill. My phone is almost dead. I only have about 10% battery left. I’m going to call Seth and tell him to go home right now. I’ll have him call you on the way. He should be there in 10 minutes. Hang up and call 911.”

“Okay.”

I hang up and quickly call my husband.

No answer.

I call again.

No answer.

Oh my god. My phone is going dead.

I shoot him a quick text.

‘Call me NOW.’

He calls back immediately.

“Seth. I need to you to go home right now. Oli is not breathing right.”

“I’m on my way.” He replies in a calm voice.

I start to tell him that I’m leaving the stable now and that I’ll be about an hour…but he’s gone. I’m talking to dead air.

That morning Oli woke up happy. My mom and I had plans to take all three kids down to a stable in south Austin where their horse vaulting team has a Barn Buddies day once a month to raise money. The kids get to come down, learn some tricks on the barrels, and then get up on the horse to practice them with an experienced horse vaulter.

After Oli got up on Saturday morning she fell back asleep right after breakfast. I sent my mom a text and told her that maybe Oli shouldn’t go. I thought maybe she wasn’t feeling very well. My mom decided that she would just stay home with her and that I would take the other two kids and our dog. Shaka had service dog training right after the kids were done riding.

When I left, Oli was playing happily with her toys.

Kekoa and Ginger had an awesome time on the horses. It was really great because they always watch Oli ride at hippotherapy, but never get to ride themselves.

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That morning of fun quickly turned into a nightmare.

This was not Oli’s first ambulance ride.

Not even her second.

Her first executive ride to the hospital was one of the absolute worst days of my life.

October 4, 2011 is a day I will never, ever forget. Never.

That morning I woke up next to Oli violently convulsing and gasping for breath. She ended up being intubated with a machine breathing for her for two days.

The next ride was August 26, 2012.

And the last was on Saturday February 7, 2014.

I’d like to say that this will be her last, but I know that it might not be.

Her seizures, any person’s seizures, are no joke. I know that lots of kids have them. Some have hundreds a day. Some are lucky like Oli and only have them once in a while.

It’s really all about perspective. I don’t know anything but what I know about Oli. Her journey is no more or less than anyone else’s. We only know the life we live so it’s important not to minimize or over exaggerate something that we have no experience in.

I get really uncomfortable when I meet someone and they say “I just don’t know how you do it?! I could never do what you do!”

Yes you could. Yes you would.

I find myself thinking those same things though when talking with my friend who has a daughter who literally can have 100 seizures per day.

How does she get through it? How would I?

But I don’t have to worry about that because that’s not our life. I can talk with her about it. I can tell her how extremely terrified I was to get that call. I can tell her how Oli wasn’t breathing well and how awful it was because I’m sure she had more than one seizure yesterday. Like maybe 3 or 4 or 5. (I don’t know because they were seizures that we couldn’t see.)

And you know what she says? Not “Well that’s NOTHING! You should be grateful it was only a couple. My daughter…” Blah blah blah.

Nope. She doesn’t say any of those things.

She says “Wow! How scary! Do you need anything? Do you want to talk about it? How can I help you get through this?”

She validates my reality.

She doesn’t compare it.

That is powerful.
So incredible powerful.

I hear people compare themselves and their struggles to other families all the time.
Why?
Why are we judging when we should be supporting?

I’m so lucky to have so many incredible families in my life who do just that.
They support Oli. They support me. They support my kids and my husband.

We desperately need support because scenarios like the one we had on Saturday, do not leave a family unscathed.

The words I spoke to my children in the van as we left the stable, will not soon be forgotten.

Especially by my 8 year old son.

“What’s wrong mom? Why aren’t we going to take Shaka to training?”

“Your sister is having trouble breathing and is on her way to the hospital. We need to go there now.”

He immediately becomes quiet.

My three year old, Ginger, does the exact opposite. She has a million questions.

“What do you mean? What is she doing? I’m hungry. Can we stop for lunch? Can I have a snack? Do you have any juice? Are we going to see Grandma now? Are we going to Shaka’s training? Where’s Oli? Where is she going? Where are we going again?”

Oh. My. God. Ginger.

Ginger is either the best person to have with you in a crisis or the absolute worst.

I’m leaning towards the worst. 🙂

It was good because she was distracting me with her 5 billion questions and it was frustrating because I was trying to figure out where I was going, who was going to take the dog, which hospital they were taking her to? Did my husband get home? Are they on their way? When was Ginger going to STOP TALKING!

I got a hold of my friend, Cat, who just happened to be at the stable with me.

“Cat. I need you to come get the dog. Oli is being taken to the hospital by ambulance. They’re taking her to Dell Children’s.” I speak rapidly into the phone.

“I’m on my way.”

Man I have some good friends and family.

I had so many people texting and messaging me, offering kind words, support, and offers to watch my other two kids. It was very very humbling to realize how many people were willing to drop what they were doing and help.

Once we got to the hospital Kekoa was even quieter and Ginger even more inquisitive.

Fortunately Cat got there as soon as I did and took the two kids before Oli was wheeled into the room.

We didn’t know what to expect, but I knew I didn’t want my kids to see her surrounded by hospital staff, talking, asking questions, and working on Oli.

My son has already seen too much in his short 8 years.

Once Oli got there she was breathing better. She was doing some breath holding off and on, but didn’t seem to be in distress. She definitely wasn’t herself. She was constantly falling asleep and wasn’t really moving at all.
If you know Oli, this is completely out of character. She is always going.

After we had been there a little while Cat asked if we could bring the kids in. Just so they could see that she was okay.

Unfortunately as soon as they got there a team came in to start her IV. My poor Kekoa was so flustered that when Cat escorted him back out of the room he grabbed my purse and tried to walk off with it.

After that, they didn’t come back in.

I can’t even begin to imagine what he must have been going through. I know what I was going through and it was awful. And I knew what was going on! He only knows that one of the times his sister took an ambulance ride, she almost didn’t make it back home.

Oli stayed at the hospital for about 9 hours. They ran a bunch of tests and then did an EEG.

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By the time they did it she was mostly back to herself. She was worn out and acting sick, she had been running a fever too, but she was aware of what was going on and awake. Once the EEG came back normal at 11 pm they said that, if we were comfortable, we could take her home.

We opted to go home.

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Oli was more than happy to be sprung from the hospital.

The verdict was seizure activity brought on by… we don’t know. A little virus maybe.

Seth had taken the kids to another friends house in the afternoon and then my mom went and picked them up so they could stay with her for the night.

Shaka stayed with Cat and his girlfriend Dubi.

IMG_1622

Yeah. He didn’t miss us at all. He is in love.

This morning my mom said that Kekoa was very tearful at her house.

We finally got him to talk about it when he came home.

“It makes me really sad mom.” He admits in a quiet voice.

He also said that he was really scared for Oli. Really scared.

Me too buddy. Me too.

It’s important that I never ever minimize his feelings.

I need to never compare, judge, or make him feel like he has to feel any other way, than the way he does.

As important as it is to me to have my friends and family validate how I feel…it is more important to me

that I validate my son’s.

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