Tag Archives: blind

So I run

5 Aug

It’s been 6 months since I’ve written.

Probably even longer since I’ve written anything with 100% honesty in my heart and left it all out here on the page.

It’s been 8 months since I got divorced.

It’s been 1 hour since I decided to not let the fear of who might read what I’ve written stop me from being true to myself and writing what I need to, to cleanse my soul.

Running and writing do that for me.

I get a lot of flack from people for running and working out as much as I do. I run almost every day. Lift a couple of times a week and compete in triathlons.

“Why do you run? Why would you do triathlons? That’s so much work! You must like pain and suffering.”

Maybe I do.

I swim until the muscles in my shoulders and back ache. I ride my bike until my legs and butt burn so bad that I can’t crank the pedals one more turn. I run until the sweat drips from every inch of my skin.  I run until the pain in my heart becomes as numb as my legs.

I run because I don’t know what else to do with my feelings.

I run so that I can drown those feelings with sweat and let the unspoken words loop endlessly around in my brain until I’m too exhausted to speak them.

There are days when I feel like I’ve come so far in the past 8 years since Oli was born. I’ve come miles and miles from where I was 3 years ago.

But sometimes I just have a moment.

Or a day.

Or a week.

Or a month.

Sometimes it feels just like yesterday when I looked at the tiny baby sleeping in the cradle beside me and wondered if I could ever love her enough. If I would ever be enough for her.

I don’t have a problem looking at her now.

I don’t have an issue feeling for her. For accepting her and pushing her and dreaming for her and advocating for her and being her legs and her eyes and her voice and the interpreter between her and the rest of the world. I don’t mind teaching people about her and answering questions and embracing the differences and cherishing the moments.

I run into to trouble when I try to do all of these things while looking at me.

I run into to trouble when my mind merges with my heart and I’m left feeling less than and inadequately equipped to deal with all that comes with being a special needs mother.

So I run.

I run for her, with her, towards her.

And sometimes I run away from her.

I run away from the pain.

I run away from the fear of the future and the unknown.

I run away from the therapists and the doctors and the never-ending appointments.

I run away from the ARD meetings and IEP’s, missed goals, reports of plateaued progress, regression and missed milestones.

I run away from myself.

When I talk about her, when I talk about us, I still feel the need to justify everything. To throw my FINE’s at the world and scream from the top of my lungs WE ARE FINE! DON’T YOU KNOW HOW FINE WE ARE! NO! THOSE ARE NOT TEARS! I HAVE SOMETHING IN MY EYE!

Why do I do that?

What’s so wrong with being not fine?

I still haven’t figured that part out yet. I don’t know what’s wrong with talking about how I feel.

I still haven’t really figured out how to feel how I feel. If that makes any sense at all.

When Oli was born and the pain and despair simply became too much for me to bare, I turned all of my feelings off. It was so much easier to be numb than it was to face another day literally drowning in my fear.

Now 8 years later I’m trying to turn them back on.

It’s harder than you’d think.

So I run.

I run and I run and I run.

The tears melt into sweat and neither can be distinguished once they drip from my nose.

I’ve pounded miles and miles of trail with my little wet feelings littered behind me.

One day, I hope to be able to talk as much as I run.

Until that day…

I’ll run.

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I Know.

18 Apr

I don’t know why I still feel the need to read through every new doctor report that I get about Oli. Especially when they are brain scans like MRI’s and EEG’s.

I mean, I know what they will say. I know how they will make me feel. I know that by the time that I reach the end of the report, I will feel that familiar heartache, sadness, emptiness, and hopelessness that I always walk away with.

I know that it will take me right back to all of those feelings that I felt, and ran from, in the beginning.

I don’t know why reading certain words about her makes me feel the way that it does.

I know that she is cognitively delayed. This is nothing new. I do know that there has to be changes in her brain that make her unlike other children her age.

I know that there are physiological reasons why she cannot dress herself, go the bathroom by herself, brush her teeth, talk, walk well, control her emotions…

I know all of these things, and yet I was still rocked and shocked when I read the words “static encephalopathy” on her latest EEG report.

Static encephalopathy?

Brain damage?

Huh?

My daughter doesn’t have brain damage. You, madam neurologist, are mistaken.
I googled the term “static encephalopathy”. This new, ugly label that you included in my daughter’s EEG report.
I googled it and I am totally regretting doing so. Although it didn’t really change anything. I already knew what those words meant.

Permanent brain damage.

Just seeing it written, actually written down, having been officially diagnosed, was enough for me.

Why did I have to read about it further on Google?

And why did the doctor not tell me herself that she suspected this?

Did she not know, that I didn’t know, that this is what they labeled her as?

Because I didn’t.

I didn’t know.

I just thought that she was delayed.

Just delayed.

I always think that it is a possibility that she will be able to catch up.

Maybe not completely. Maybe she would always be unique, but aren’t we all?

Did they have to go and write down, WRITE DOWN, that she has permanent brain damage?

Don’t they even care about my feelings?

Shouldn’t this new label have required an actual sit down with the doctor?

Shouldn’t an official diagnosis of “static encephalopathy” require a meeting with my family to explain what this means for my daughter? Why do they have to be such assholes and write down something like that in a report?

The only reason that I was able to read it was because I requested all of her records for this Medicaid waiver program that we’re trying to get her on. I wasn’t mailed a copy or given this piece of paper upon discharge from the hospital.

Now I sit here, with my daughter sitting beside me, tears pooling in my eyes, and whispering “I’m so sorry” once again.

I’m so sorry Oli. I’m sorry that this happened to you. I’m sorry that this is something that makes your life more difficult. I’m sorry that I had to read this ugly label and feel sad for you for a little while. I’m sorry that I had to look into your beautiful face, put my arms around you, kiss your neck, and let you feel my tears as they dripped down onto your shoulder. I’m sorry that I can’t tell you why I am crying.

I will make you the same promise that I have made to you since the day you were born.

I will NOT let this define you.

I will NOT let this hinder you or discourage you or slow you down in any way.

I will NOT let doctors or therapists or teachers read this about you and let them make decisions about your future based on what a piece of paper says.

I will make sure that they KNOW that this is NOT who you are.

I will make sure that they see everything that I see.

I will make sure that the world treats you the same as everyone else and in most cases…better.

Because you are my special little girl. You are capable of achieving any dream that your heart desires.

It doesn’t matter what a piece of paper says.

This…

I KNOW.

Heart and Sole 5K

2 Mar

March 1, 2014

The Heart and Sole 5K was run in the memory of Alexandria Danielle Romeo. 09-3-1990 – 11-23-2011. All proceeds from this race were donated to epilepsy research. Rest in peace Danielle. You can learn more about her life and events held in her name to fund further research for the treatment of epilepsy here http://livewithaheartforedanielle.com/.

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Before the race began Danielle’s mom welcomed and thanked the participating racers and walkers who all came out to support finding a treatment for epilepsy. Her daughter Danielle, died from a seizure in 2011.

Right before we started, Danielle’s best friend released doves to guide and protect us through the race course.

The doves flying over our heads as we started.

The doves flying over our heads as we started.

It was a very touching and moving tribute.

The race was held in Lakeway,TX which is a very beautiful, but VERY hilly part of town. As we drove in, up and down, up and down, over the many, many hills we knew that there may not be much running during this race.

It was way steeper than this picture portrays.

It was way steeper than this picture portrays.

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Kekoa decided that he was going to run and walk the entire race. He did not want to ride in the stroller at all.

He decided that at the beginning. And then quickly changed his mind once we began.

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Running is hard. It’s not easy when you start. At all. It takes persistent practice and a positive attitude that you CAN do it. That you WILL do it and that it will get easier as you progress.

As soon as we started Kekoa started to give up and I reminded him of this.

We’ve told him that we will go at his pace. We will go as fast or as slow as he wants and that when he needs to walk we will walk with him.

I wasn’t the one who decided that he was going to run with us from now on.

He decided that.

The last two races that we did he wanted to run and then he quickly began to defeat himself shortly afterwards.

I repeated our promise to help him through and go at his pace.

He didn’t want to listen to me as the tears began to fill his eyes and he began his mantra of “I can’t”.

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“You CAN Kekoa. You can. I know you can. It’s hard and it hurts and it takes a while to get into shape. It was and is STILL hard for me sometimes. All I ask is that you try. That’s it. I just don’t want you to give up because your mind is telling you that you can’t. You cannot just give up in life when things get hard. You keep going and you get through it. Just keep going.” We’re walking side by side and I can see that he really doesn’t want to give up. He just doesn’t have the self-confidence to know that he can get through it.

I know this feeling all too well.

I know what it feels like to feel like you can’t make it. Like the weight is too great and the pain is too much and it would just be soooooo much easier to give up.

I know this… because this is what I felt when Oli was born.

I know what it feels like to honestly believe that you will never make it through.

I know that running and giving birth to a child with disabilities is different.

But the lesson is the same.

I can use my experience about life and a positive attitude and pushing through the tough times to teach my son to do the same.

Even if to him, it’s only finishing a tough 5K, it’s still an opportunity to teach him how to live.

It’s a lesson that cannot be learned in one race.

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But it is a lesson that I will repeat as long as he is willing to try.

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And he did.

He felt defeated and tired. It was hard and frustrating.

And at the end, not only did he finish, but he finished helping his dad to push the heavy stroller up a hill.

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By the time we finished it was an hour later and Oli was DONE and Ginger was DONE and Kekoa was DONE and Seth and I were ELATED that we were almost to the finish line.

It was not the best race that we have ever done together, but it was one of the most valuable.

I learned to be more patient with my son and to give him the positive encouragement that he needs.

Kekoa learned that he can complete an entire 5K ALL BY HIMSELF.

Soon after we walked over the finish line, the tears and frustration were forgotten and he was proud of himself.

He really was proud that he had done something that many 8 years old had not done.

He was proud because he finished and he DID NOT GIVE UP.

He was proud because, as much as he wanted to, he did not sit his butt in that stroller. He just didn’t.

I was proud of him.

As the day wore on and I thought back over our race, the prouder I became of my son.

This race was run for Oli, but it was all about Kekoa.

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And he’s excited to do it again.

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.

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’s a beautiful life.

20 Nov

When Oli was born my son Kekoa was only 17 months old. He had not even spent a year and a half in this life. On this earth. He was so incredibly young that I was still getting to know his little personality. I was trying to figure out what kind of person, what kind of man, he would grow into.

What kind of grooves would this little boy fall into after having a sister born with significant disabilities?
Would he stay locked into hers? Would he be able to find his way out? Would he be able to tread his own path, defining his own grooves? Would he be able to define himself and to find his own identity or would he continually be forced to follow along behind her?

Would I force him to follow along behind her?

Would he be mad at ME? Would he resent ME for the events in his life that were about to take place?
Would he resent HER for being born the way that she was?

As I sat on the corner of the tub, bathing my 17 month old little boy, I asked myself all of those questions. I cried over all of the possible answers that lay before me.

I cried for the little boy that I had promised to do everything for. I cried over the fact that I had somehow unintentionally just made his life so much harder. I cried because I was not going to be able to fix this for him. I was not going to be able to make this easy.

When she was born I never even considered the possibility that her birth could be the best thing that would ever happen to my family. I couldn’t even dream of recognizing the positive outcomes because I was so drawn into the pity parties and the negativity. I couldn’t stop feeling sorry for myself long enough to see the beautiful forest from the trees. I was stuck in an outcropping of horribly ugly, brown, leafless, dark, gnarly, trees. I hated those stinking trees.

As life moved on…

As I moved on…

As the world moved on… I began wondering what kind of person this experience would mold my son into. I began realizing that we had a unique opportunity to view our daily life as a constant lesson to learn about humanity. The good and the bad.

I learned and began to teach my son how to respond rather than react to people and situations that might not always be positive. I learned and then taught my son compassion and understanding rather than anger and resentment.

We talked about WHY people sometimes respond the way that they do to Oli. We talked about HOW we could and should respond when people are mean. We talked about how most people just don’t see the world the way that we do. We talked about how people are generally good and that sometimes they just don’t understand and are curious, but might not know how to ask about her condition.

We talked about a lot of things. We still talk about a lot of things.

Kekoa is 8 years old now. We talk like we’ve always talked, but now I try to get him to tell me how he feels about things. I try to get him to tell me how it makes him feel if someone is mean to his sister, but it’s hard.

He’s only 8.

Mostly he just says that it makes him sad. He says that he wished people understood her better. He wishes that people knew that she was just like them, but unable to speak or to see. He says that he wishes that they would consider her feelings when they were mean and not treat her like she doesn’t understand.

I wish that too Kekoa…

So we talk about those feelings and the actions that we can take to make it better.

I never really know how much he understands when I try to help him work through these things. I never know what he does with these talks and these experiences when he walks out of my front door in the morning and heads off to school.

Until now.

The mom of one of the girls in Kekoa’s school emailed me this morning to tell me a story about my sweet boy.

She said that her daughter Rachel, was being picked on by some boys at recess earlier this week. Her daughter told her that Kekoa had stood by her, comforting her, and helped her to reach a teacher who could help. Rachel told her mother later “Kekoa knows how to treat girls because he has sisters.”

Because he has sisters.

Because he has Oli.

Really that’s what it comes down to.

He has learned such compassion, such respect, such infinite wisdom because he has Oli to teach him.

He has a sister who has never looked into his eyes, never spoken his name, never uttered a sentence, but has taught him to be an incredible human being.

She is teaching him how to become a wonderful man.

I can see how beautiful my trees are now.

I can look my son in the eyes and never feel remorse or sadness about the way our life has turned out.

I can look at him and see the amazing gift that Oli has given all of us.

She has made every single one of us into a better person and has allowed us to live a life that I never even would have imagined.

It’s a beautiful life.

Mother Moments

14 Jun

In the darkest of my fears, I sat alone, watching my little girl sleep. She was three days old. I felt like I had aged 50 years in those three short days. My life as I knew it, was over.

Before me slept an enormous responsibility. Before me slept one of the most vulnerable babies I had ever known. Before me slept my fear, my betrayal, my heartache…my love, my new life…my daughter.

From the moment that I found out that she was blind, I began to have “moments”. Moments are hallmark to all new mothers, but mine became drastically different from theirs. I began to have special needs mother moments.

In order for me to describe to you what those are, I have to tell you about my moments when my first chid was born. When he was born I had lots of those mommy moments where my heart filled with fear and anticipation. My brain would race full speed ahead to the future and I would begin to worry about what would happen to my baby boy.

Will he sit up before he’s 6 months old? Will he crawl by 9 months? Will he walk before he turns 1? Will he be potty trained by the time he’s 3? Will he learn his colors, numbers, and letters before kindergarten? Will he learn to read without difficulty? Will he get good grades, make friends, join the soccer team or play basketball? Will he be a responsible driver at 16? Will he take a girl to the prom? Will he graduate high school with honors? Will he go to college out of state?

All of my worries with my son were not questions of “what if he doesn’t___”. They were questions of will he do this now or later? Will he do this or that? I never feared that he wouldn’t walk or talk, be potty trained, learn the alphabet, read, write, drive, play sports, have girlfriends, graduate or go to college. I knew that he would do all of those things.

I simply worried the biggest worry since the invention of motherhood. My uneasiness festered within the age old question that millions of moms before me have tortured themselves with.

“Was I doing it right?”

After the birth of Oliana my moments of “Was I doing this right?” became overwhelmed by the heavier contemplation and an inward reflection of myself. I began to worry “Can I do this at all?”

In the beginning I had no one to lead me down a previously cultivated path, pointing out all of the obstacles. I had no mother who had been there before me who could assure me that I was doing this thing correctly.

When my son was born I simply picked up the phone and called my mother if I had a question. If she didn’t answer I called a friend. Now when I asked my mom questions about what to do with Oli or what the next step should be, she shrugged her shoulders and responded “I just don’t know.” My friends didn’t know either. If I tried to describe how I felt they all got a look in their eyes of total compassion, but complete incomprehension. They just didn’t understand.

I had been thrown into a tumultuous sea with a flimsy life raft that had a slow leak in it.

No one knew what I was supposed to do. No one could tell me how I was supposed to feel.

I began to ask myself some of those same questions that I asked myself with my son, but with a completely different context. Instead of wondering when she would do things, I began to wonder if she would EVER do them.

Will she learn to read, write, or spell her name? Will she ever be able to tie her shoes? Will she learn to walk down the street by herself? Will she one day be able to say the alphabet, be potty trained, or learn to use a fork and spoon by herself?

I didn’t know.

I started to have moments where I just could not stop myself from reliving what my life had been like before and what it was going to be like in the future. I began to daydream and create alternate realities where I would live the best and worst case scenarios.

The best of the best case scenario was one where upon a trip to an eye specialist, he would look into her non-existent eyes and tell me that there had been some kind of terrible mistake. She wasn’t blind at all.

Best case scenario was that she was only blind and cognitively and developmentally appropriate.

Worst case scenario involved a wheel chair, hospital bed, ventilators, and round the clock nurses. Life would creep slowly by with every minute spent worrying about her health for the rest of my life.

I ended up somewhere in the middle.

These “moments” now take on a whole different perspective as she gets older. Most often it happens when I see another little girl that is her age doing something normal. Something completely average and typical. Running through the park, laughing and playing, tying her shoes, eating an ice cream cone, hugging her mother, saying I love you.

These moments creep up on me and slam that heartache fiercely into my chest and steal the breath from my lips.

Those are the things that my little girl should be doing. I close my eyes and superimpose my girl’s face onto the other child’s body and imagine her living her life without blindness or delays. I imagine her running and playing. I see her looking into my eyes and feel her breath against my cheek as she whispers “I love you mommy.”

But when I open my eyes, those dreams disappear and vanish quietly. Thin, transparent, wisps of smoke that drift effortlessly through my fingers.

This was simply not how it was meant to be. She has a disability. She will ALWAYS have a disability. I cherish who she is and what she can do. I celebrate her numerous victories and feel gratitude towards what we have.

Sometimes…I still get sad. I’m human. I’m a mom.

Those are some of my moments today.

I am a child.

20 May

Oli is 6 years old, blind and autistic. Her autism has left her non-verbal.

I know that I don’t really know what she thinks about, what she dreams about, or what she would want to say.

But because I am her mom, I get the honor of speaking for her until she finds her words.

Here is what I think Oli would want you to know about her.

“Hi! My name is Oli. I know that my mom gets this look from strangers when she tells them about me or when they meet me for the first time. She calls it “the look”. I don’t know what “the look” looks like because I can’t see it, but I know that it makes my mommy sad.

I know that it makes her sad because I can hear it in her voice when she talks about it. I can feel it in the way her shoulders sag when she thinks about it. And I can taste it in the tears that roll down her face when she cries about it when she thinks no one is looking. I’m looking. I’m always looking because I know my mommy better than she thinks I do.

I know that “the look” hurts my mommy’s feelings.

I also hear her talking about it with my daddy. I hear her tell him that this look means that people feel sorry for her. That they feel sorry for me.

Most importantly, I hear her tell daddy that people don’t need to feel sorry for her or for me. She also tells ME that I don’t need to feel sorry for MYSELF. That there is nothing wrong with me. I just do things differently than other children.

Despite our differences, I’m still a child.

I want you to know that the way I am… is not wrong. That the way your child is…is not right. It’s just different.

I’m here to tell you that you don’t need to feel sorry for me. You don’t need to pity my family. I am fine. I will do what I will do when the time is right. My parents will push me and advocate for me. They believe in me and I will do everything that I can in this life. My life is not sad. My life does not deserve your tears. It should be celebrated. Please don’t be sad for me.

I am only a child. A child with special needs yes, but still a child.

I know that I’m not the same as you. I know that there are things that I do that might seem strange. I don’t understand what they are, nor could I tell you why I do those things. All I can tell you is that I have to do them. That is just part of me.

I have a wonderful life. I live life to the fullest and I enjoy most of every day. I have good days and bad days just like every other 6 year old. I cry when I don’t get my way. I smile when I do. I throw tantrums when I don’t get what I want. I give kisses and hugs when I do. I don’t listen when I don’t want to do what you’re telling me to do. I listen when I do. I giggle. I test boundaries. I play. I am a child.

I am my parent’s child.

They are proud of me. They love me. They are not ashamed of me. They don’t feel sorry for me.

Neither should you.

Mommy and daddy bring new people into our house sometimes. New therapists, friends, and family I haven’t seen in a long time. I can feel their tension. Sometimes they don’t know what to do with me. How to touch me or talk to me. How to play with me.

I know that other people don’t understand my life, but you don’t need to feel uncomfortable around me. You don’t need to be frightened or nervous. Interacting with me cannot be done wrong.

Just remember…

I am a child.

I may be different than your child, but I am still a child.

I’m just Oli.”

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