Tag Archives: kids

My heart is a flood of tears.

6 Feb

“Have you ever considered that he might be on the autism spectrum?”

The air left my lungs.

My heart dropped to the floor.

My world stood still, and silent, and dark.

Again.

The psychiatrist sitting in front of me looks at me with her clear, blue eyes.

Her pixie face is soft and caring.

She asks the question with compassion in her voice.

This was the polar opposite of the encounter that I had when Oli’s diagnosis was dropped into my lap.

Autism.

Kekoa?

Autism.

No.

Wait.

Maybe?

Wait.

No.

No.

Maybe?

I hadn’t even thought of it until right at that moment.

That brief moment.

It was 10 seconds of my life that might potentially change the course of my days from here on out.

My life is made up of these little moments.

I hadn’t considered it at all.

Until now.

Until I started looking at him with a different set of eyes.

Now I am seeing him.

The obsessions.

The social awkwardness.

The demeanor.

The sound sensitivity.

Maybe.

“What do you think?” There’s that quiet concerned tone again.

In my opinion, all major medical diagnosis suggestions should come from psychiatrists.

Should come from this psychiatrist.

She’s fantastic!

There’s no judgment.

There’s no doom and gloom.

There’s only presence.

“I don’t know. Do you think?”

My mind is half in the room with her and halfway through his future, playing out every possible reality.

Predicting what a diagnosis of autism would mean for him.

“We may be looking at more than depression and anxiety here.”

She says it bluntly.

She says it without complete conviction.

She is throwing out another possibility to explore.

She isn’t diagnosing. She is suggesting that I further investigate.

If I want to.

Kekoa was diagnosed with a major depressive episode and anxiety a few months ago.

After he had changed schools.

After he began being bullied at school.

After his dad had moved out of the house and to another city.

After we got divorced.

After the world as he knew it, fell apart and began to feel empty, and dark, and cold, and painful.

After he lost all of his joy and happiness.

After he began to loose hope. Hope in himself. Hope in the future, and the present. Hope in the people around him.

I watched my happy, energetic, 9 year old boy loose himself in a tumultuous sea of sadness, where he was beginning to sink because he could no longer swim.

“I may not cry on the outside, but my heart is a flood of tears.”  These were the words spoken by my son tonight at his therapy session.

Depression.

Anxiety.

And now possibly autism.

As I rode home, with my baby boy sitting next to me in the car, I began to process the information that I had just been given.

And I began to feel the exact meaning of the words just spoken by Kekoa.

I knew exactly how he felt because I too may not cry on the outside, but my heart was a flood of tears.

I was so sad.

I was so angry.

I began to question and feel everything that I felt when Oli was born.

Why? Why my child?

And in an instant I remembered the answer.

Because it’s the same answer that I found with Oli.

Why not my child?

We are not special here.

We are not invisible, indestructible, or impenetrable.

This is life.

There are no contracts, agreements, or guarantees. We get what we get and must accept what is.

Not what should be, or might be, or could be.

What is.

I know what to do with this.

I know that any diagnosis will never quantify, explain, or define my child.

He is who he is and I love who he is.

I will allow myself a few moment of sadness. A few moments of anger.

And then I will move on.

I will move on to tomorrow and do exactly what I am meant to do.

Which is to help my son.

My heart may be a flood of tears tonight, but I see the sunshine in tomorrow.

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The page that I’m on

11 Dec

Some days I look at her and I can’t believe how lucky I am.

Not everyone has an Oli.

Some days I look at her and I can’t believe how lucky she is.

She’s not sick. She’s not in the hospital. She’s not hooked up to any machines. She’s alive.

And some days just the fact that those are my blessings, makes my stomach turn.

It still feels like a rollar coaster ride some days. A lot of days. But not as many as before.

I can look at her now and most of the time not compare her to her friends. To her classmates. To the kids who were supposed to be her classmates.

Every once in a while I’ll get a glimpse of the little girl who I thought she would become.

Sometimes it’s in a photograph. Sometimes it’s in a dream.

Every time it makes me lose my breath.

Like someone just punched me in the stomach and I can’t quite get enough air into my body.

I saw a picture once of Oli portrayed in a book as a ballarina. She was smiling at the camera; looking at the camera. She was beautiful in that picture. Such a perfect little seven year old girl, dressed up in a tutu, posing for a picture. I can’t look at that page in the book. That’s not my Oli and if I start imagining and pretending it is… I will grieve for the loss of that little girl all over again.

I don’t want to lose that little girl all over again.

And some days… I just do.

Some months she will progress so much. She will speak a few words, take a few steps, stop stimming so much… and I will begin to believe that she will make it. That she will become the little girl that grazes my dreams every once in a while.

But then she’ll stop.

She always stops.

And then she’ll go backwards.

And then I lie awake at night and wonder what I did. What did I do? Did I not praise her enough? Did I not do enough at home? Was there some therapy that I should have looked into? What would have made the difference this time? What could I have done to propel her forward? To keep her where she was and not keep falling behind.

I think about that for a few days and then I remember.

This is Oli

This is who she is.

At some point after she was born I stopped agreeing with other parents who told me that she was going to be okay. And by “okay” they meant that she would catch up to her peers.

I think that maybe they believed it.

I probably believed it too.

Or maybe we were all just trying to make me feel better.

Now, no one tells me that she will catch up. No one tells me that she will be okay. At seven years old, no one believes it anymore I guess.

I miss how it was before.

Tonight I sit at my computer trying to figure out how I’m going to schedule ALL of her therapy sessions that she gets now.

Occupational therapy

Physical therapy

Speech therapy

Music therapy

Massage therapy

Aquatic therapy

Hippotherapy

I start to question just what it is that I’m doing?

What am I doing?

Are these helping her? Are they helping us?

What are we doing?

I fight and I fight and I fight.

I research different therapies and teaching techniques. I go to ARD’s at school and fight for more services.

I fight for her home therapy sessions.

Her home PT cut her therapy in half.

And I fought.

And I lost.

I lost that one. She doesn’t get as much home physical therapy as she used to and I’m pissed.

Don’t they KNOW how much she needs it?! Don’t they KNOW that she is almost walking independently? Don’t they KNOW?!

Yes. They probably do know. They probably know what I am reluctant to admit.

That all of these things are just not helping like they used to.

That Oli has come as far as she will come right now.

So what do I do?

Do I give up? Do I cut back?

Do I sit and hold and hug and kiss my daughter more? Do I do all of the things that normal families do with their children if they’re not in hours and hours of therapy sessions?

How is this affecting my other children?

What does Oli’s schedule do to them?

They never complain. At 9 and 4 years old, her brother and sister have not once, ever complained.

If you ask my son if he ever gets jealous of Oli’s attention, he just looks at you like you’re speaking another language.

Trust me, I’ve had this conversation with him.

“What do you mean mom? Oli needs help.”

But as their mother, at some point, I have to stop and consider us as a whole family supporting each other.

Not all of us supporting Oli.

But how can I look at this amazing little girl and not offer up the whole world for her?

How can I look at her and see just how far she really has come and not want to do more?

How can I get access to all of these wonderful therapies and say no?

What if it helps?

What if it works this time?

What if she begins to walk and talk?

What if I stop and she never does? Was it because we didn’t do everything?

I’m not sure, at this point, that I can live with the thought of not doing everything.

So…If you ask me what it feels like to be a special needs parent I will tell you this,

It feels like you are reading an amazing story with excitement and joy and suspense and so much love. You get to the last chapter because you just know that it is going to be the best ending ever….

And the entire last chapter is missing.

It’s just not there.

You have so many questions. Did she speak? Did she walk? Did she go to the prom? Did she have a best friend? Did she ever play with her brother and sister or learn to ski or go fishing or read a book or even learn the alphabet?

You don’t know.

You’ll never, ever know.

Until one day you stumble upon an old, threadbare copy of that same book sitting on the back shelf of some dusty, second hand book store.

You pay $1 for the copy and rush home to read that final chapter, only to realize…

That the ending never really mattered all that much.

It was the journey to the end that is what made the story.

So that’s how we live here.

We live the journey and not the destination.

I live my life one page at a time.

I live my life knowing that the last chapter is missing.

And I try to make the best of the page that I’m on.

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.

I never said it would be easy

29 Mar

I was honored to be able to present at the 2014 TAER conference again this year. This is the second time that I was able to speak.

Can you believe it?! Twice! What?! Are they crazy?! Did they hear my speech the first time? Do they remember the boxes of tissues that we passed around the room last time? Apparently I forgot about that part too because even I didn’t come prepared.

I’m a crier. I know. How can I still cry at a story that I’ve lived, written, and spoken about frequently?
Some things will never cease to be just a memory. I will relive the story of Oli’s birth and her early years every single time that I speak about it, for the rest of my life.

Yes. It has gotten easier. The pain is a little bit less with the passage of time. It’s easier now because I know that her story, my story, has a happy ending.

I know that I am able to relive those early moments, the ones that are burned in my brain, live them, feel them, talk about them, write about them, cry over them, and then go home and pick up my girl and realize how far we’ve come.

Writing about it and talking about it has actually become my therapy. My outlet for grieving and healing.

This will surprise the people who have read most of my story or seen me speak, but I used to never talk about how I felt about any of this. Never.

Fine was absolutely my favorite word and I was FINE! Don’t you know how fine I am?

I was fine, she was fine, we were FINE, people!! I would say this as my life was literally falling apart around me.
I would say it as the tears stained my pillowcase at night…
I would say it as my heart felt like it was shattering into a million pieces every time a new diagnosis washed over my brain and flooded the banks of my emotions…

I was fine.

I would say it to everyone.

Anytime a friend or family member would meet my gaze with worry in their eyes and a soft hand on my shoulder and ask “How are you?” I would respond with an outer persona that was not me. I would speak the word “fine” and my soul would scream out at me to reveal the truth.

I. Was. Not. Fine.

But I didn’t know how to tell anyone anything else. I didn’t know how to tell people that I was struggling because I thought that it would mean that I wasn’t a good mom.

I thought that because my life and my emotions didn’t follow the people’s stories that I’d read about online, you know, the ones that are like mine now, I thought that it meant that I was a terrible, awful mom.

Let’s be honest here.

My blog and my facebook page now? Would have made me feel like total crap back then.

I would read stories like mine with a disgusted feeling in my stomach because I didn’t feel any of the things that I feel now. The old me would have been so jealous and so envious and so….blah…about the new me. I was so caught up in my negativity and my own feelings of self pity that it would have killed me to read about a mom who just accepted her life after the birth of a special needs child.

Come on. I mean I was no where near acceptance. We weren’t in the same zip code. We weren’t even on the same continent.

I did NOT accept that I had a child with a disability.

I did NOT accept that my life had taken a turn that I wasn’t expecting.

I did NOT accept that I couldn’t fix it, change it, run from it, hide from it, bury it… live with it.

I didn’t accept that this was something that I was going to have to learn to live with.

I did not want to have to accept the fact that I had to accept the fact that I had given birth to a daughter with a disability. A blind child. A child with multiple impairments.

No. That was totally unacceptable.

So I would read about moms who shared their beautiful journeys to acceptance, except I never saw their journey. I only saw their destination and that destination was acceptance. I didn’t understand that they all had a story to tell about getting there.

I wanted someone to show me the precise steps that they took to just be okay with it all.

To be more than okay with it all.

To be happy.

What did they do?! Why won’t they just show me?! Can’t they just come over to my house, take my hand and walk me through it?! Why not? Why were they doing this to me? Didn’t they know that I was dying here?!!!

Of course they did, but now I know that no one takes a specific path. There is no right way to do this deal.

They couldn’t just walk me through it. I had to find my own way. I had to create my own path.

And as much as I felt like I was doing it all wrong back then, now I know that there is no wrong way either.

I wish that I had known that while reading the stories of acceptance and hope that other parents put out there, that they were actually planting little seeds in my brain. They were planting the seeds that would eventually grow into flowers along my path and allow me to find my way home.

I think that this is the other reason that compels me to share my story today. My heart physically hurts every time that I see another mom struggling. I see them and I feel their pain just like it was my own.

I wish that I had the magic to bottle up the way that I feel today. I wish that I could just give it to those moms.

But this is part of the beauty. It really is a beautiful journey even when it’s horrible and ugly and painful and sad.

One day, all of us are able to stand at the doors of our destination, look back on our journey, and then look another struggling mother in the eyes and say “I never said it was going to be easy; I only said it would be worth it.” (Quote by Mae West)

What’s wrong with her?

8 Mar

I posted on Facebook earlier tonight that we met a very nice young lady while eating dinner at Chili’s. She wanted to come over and say hi to Oli. While it was very nice of her to come up and ask questions about Oli (I’d much rather have someone ask rather than gawk) she did say something that I just can’t easily forget.

The more that I’ve thought about it tonight, the more it’s eating away at me. And while I don’t talk about things very easily, I write about them very easily so here we go…

The first words out of her mouth after “Hi. Can I ask you a question?” were “What’s wrong with her?”

Oh my god. Would you like me to serve you my heart on a plate lady? Since you know. You just ripped it out of my chest and all.

What’s wrong with her?!!

Nothing! Nothing is wrong with her! Everything is right with her!

What is wrong with your son? Why was he screaming at the top of his lungs the entire meal?

No. No. Rest assured. I did not say any of those things.

Why?

Because I’m nice. Because I don’t like to hurt people’s feelings. Because often times I let myself be hurt rather than risk hurting someone else.

I know. Who does that?

I also didn’t say any of those things because this woman really did have honest, pure intentions. She didn’t mean to hurt my feelings. Or my husband’s feelings. Or my children’s feelings.

Or more importantly…

Oli’s feelings.

She said that she had a cousin who was autistic and thought that Oli probably was too. She was a very sweet, nice woman and even though she asked that awful question, I’m still glad that she said hi. I’m still glad that she wanted to say hi to Oli and touch her.

I’m really not trying to throw this woman under the bus here. Even though it seems like she’s sitting under the tires as we speak.

I’m just trying to make a point about the words she used.

Even though words can’t be seen, they can be felt the most. They can cut the deepest and leave scars on the heart.

This was not the first time, nor will it be the last time, that I hear painful words.

Given the choice between someone staring at her or asking what’s wrong with her… I’m not sure which is worse. Or which is better.

For Oli, the stares are better because she can’t see it anyway so it doesn’t matter.

Hearing someone ask what’s wrong with you has to be devastating. Especially since it’s not like she can turn to me and say “Well mommy. What IS wrong with me?” She can’t express to anyone how those words make her feel.

And then there’s my other children.

I can’t even begin to tell you what it is like to have to sit across the table from your sister and hear someone ask what’s wrong with her, like you’re not even sitting there. Like you don’t have to deal with this kind of stuff every single day.

Are the stares better for my other children? I can’t answer that. I have no idea.

I like it when people approach me. I like to talk about Oli. I’m not sure what the right phrasing would be in circumstances like this.

Perhaps just saying hi. Saying something like “Hi. Did you have a nice dinner? I just wanted to introduce myself and tell you that I have an autistic cousin. His name is ____.”

That way I then have the opportunity to say “Hi! You know my daughter here has autism too. She’s also blind.”

Or maybe I should just start being more proactive and if someone comes up and says “Hi. Can I ask you a question?” I’ll just interject with SHE’S BLIND AND HAS AUTISM. SHE ALSO HAS A GENE DELETION AND IS NON VERBAL, HAS SEIZURES, IS DEVELOPMENTALLY DELAYED, HAD SURGERY WHEN SHE WAS 7 MONTHS OLD BECAUSE OF SEVERE REFLUX. SHE’S HAD A FEW OTHER SURGERIES TOO. HERE LET ME START AT THE BEGINING. PULL UP A CHAIR. SHE WAS BORN WITH MICROPHTHALMIA! Excuse me a second, WAITER! WAITER! Hi. Can you give me piece of paper and a pen? I need this lady to take notes. I fear I’m losing her here.”

Ok well. You see where I can go. Ya know. Issues and all. I tend to talk too much and give too much information so that might not be the best solution. (I wouldn’t ever say any of those things in front of Oli of course, but you get the point. Had to put that in there for the serious Sally’s who might feel the need to comment about it.)

I think the first option is probably the best. People may or may not even have a relatable topic to approach me with. You can always just say “Hi. What is your daughter’s name?” Then inevitably I WILL tell you about her.

Come on guys.

I’m like a leaky faucet when it comes to talking about Oli. You know this about me.

I’m an over-sharer. Can’t help it. It’s in my genes. I come from a long line of over-sharers.

I just don’t want Oli or Kekoa or Ginger or Thalia or myself to have to hear the words what’s wrong with her again. Especially not from someone who has a kind heart and good intentions because then I just feel REALLY bad.

If it came out of some jerks mouth, well then… that’s easy.

I just want people to think about the things that they say, when they don’t stop to think about who might be listening.

There could be little brothers and sisters listening.

The child that you’re talking about could be listening.

Even a child who you might think can’t understand you? Can probably understand you.

My Oli can understand you.

Until I meet a doctor that can tell me with 100% certainty that Oli absolutely, positively CANNOT understand any kind of language…

I will always believe that she can. Even though she cannot speak.

Because that’s my job. That is MY job as her mom. I am supposed to advocate for her and protect her and ensure that she knows that she is entitled to the exact same rights as every other human being on this planet.

She deserves not to have people speak about her like she isn’t even there.

We don’t do that to people.

My daughter is people.

And there is NOTHING wrong with her.

Just a mom

6 Mar

I’m about to close another chapter in my life and open a new one.

I…am going back to work.

In another life, I was a nurse. I’ve said that for a long time whenever anyone asked me what I do for a living.
“I was a nurse in another life. Now I stay at home with my children.” I would reply with a great deal of sadness. A great deal of remorse and a certain feeling of loss. I always felt like I had lost part of my identity once I stopped going to work. Once I stopped putting on those scrubs and walking through that lobby of the hospital to take the elevator up to the 5th floor of the Pediatric ICU unit…I simply stopped being a nurse. Now I was just a mom.

I never wanted to be just a mom.

“What do you do?”
“I’m just a mom.”

Four and a half years later, I now realize what I was leaving out with that word “just”. How much I was devaluing myself by saying that. I have never been “just” anything, least of all just a mom.

That word leaves out alllllll of these other things that I have been for them.

I was a teacher and a referee. A cheerleader and a coach. A therapist, a doctor, a nurse, a counselor, a confidant, a friend, an enemy, a prosecutor, defender, judge, jury, warden, jailer, and probation officer..
I was all of those things in addition to being their mom.

Now I’m not going to be just a mom anymore.

As this part of my life is ending…I’m sad. I kind of grew to like just being a mom.

But I’m so incredibly happy.

I LOVED being a nurse. I miss it.

But I LOVE being a mom too.

I look back on these last 4 years with an overwhelming sense of gratitude. Look at what I’ve been able to do and see in these years! Look at how much I’ve grown and changed as the direct result of the 3 little people under my direct supervision. Look at how much they’ve taught me.

I was extremely sad when I walked out of those hospital doors for the last time in August of 2009. I felt like part of me had died and I did not want to stay at home.

Now I can’t even begin to register how I ever felt that way.

I was there for all of the amazing things that happened.

And all of the devastating things too.

I was there when Oli took her first steps. I was there when she learned to stand by herself. I was there when she said “mom” for the first time. I was there for her when she went to school for the first time.
I was there when she stopped talking. I was there when she had her first seizure, and then her second and third and…. I was there for the ambulance rides and the hospital stays. The doctor appointments, the evaluations, the new therapy sessions.

I have been there for Ginger since the day she was born. I haven’t missed a moment, a milestone, a bedtime kiss…

I was there when Kekoa went to school for the first time, when he fell off of his bike and had to get stitches. I’ve been there when he came home crying because the kids at school just don’t understand what it’s like to have Oli at home.
I’ve been there for it all.

Going back to work may mean missing out on a few of those moments.

I know that with change comes growth. I know that I am in a spot in my life where it is time for me to change, but I’m scared. I’m scared of not being there anymore.

Even though I know that I will be and I know that my kids are going to be in good hands because their dad is going to be here.

Even though my brain knows all of these things….my heart isn’t quite there yet.

I never realized until this moment how much I had grown to love staying at home with my kids. I never knew how much I would treasure the car rider lane and waiting for the bus. Preparing after school snacks and breaking up fights.

Okay. I can live without that last one.

I guess I needed this opportunity to really appreciate the amazing gift that I was given when I walked out of the hospital on that hot August day in 2009.

Whenever I meet a woman and I ask her what she does, I can honestly say that I will NEVER hear the words “just a mom” again without looking into the woman’s eyes and seeing all of the things that she is leaving out.

NO ONE is just a mom.

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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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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.

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