Tag Archives: family

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.

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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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.

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.

THE MOTHER OF ALL MELTDOWNS- Virtual Blog Tour

7 Nov

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I recently had the honor, and I do mean honor, of being selected to participate in The Mother of all Meltdowns virtual blog tour. (Click on the title to purchase the book on Amazon.) Author Crystal Ponti has joined forces with 30 other fantastic, well known bloggers to recount their most memorable mother meltdown moments. If you’re a mom, if you’re a friend of a mom, a dad, if you are the child of a mom…you NEED to read this book. I found myself so totally absorbed within the first few minutes of starting it that I was surprised when my 3 year old daughter suddenly stuck her nose in front of my Tab, looking up at me with concern on her face, and asked why there were tears in my eyes? “Are you crying mommy? Why are you laughing and crying mommy?” She was completely confused. “Just reading a good story Ginger.” “A good story” is a total understatement. It was like these women had wandered, unbeknownst to me, into the confines of my head. Like they had been sitting front and center to the stage that had held some of my meltdowns. They had been where I had been. Of course, my 3 year old wouldn’t understand all of THAT. I couldn’t tell her “Well Ginger, see you kids drive mommy crazy sometimes and sometimes all you can do is sit back and hysterically laugh to the point of tears at the fact that you are not the only one being slowly driven to insanity some days.” “A good story” was the short and sweet answer. Satisfied, she wandered away and I was left alone for 20 more minutes to read a few more chapters. In my opinion, if you can laugh and cry within the first few pages of a book? You have gotten all of your moneys worth and more. There is no such thing as the perfect mom. Some days our houses are messy, our dinners are over cooked, okay… burned…I was trying to be nice there, our clothes are pj’s, and the laundry may be rewashed 3 times before making it into the dryer. Some days…mothers have meltdowns. But no matter what, our children are always loved.

As part of the virtual blog tour some of the authors have complied a list of Q & A’s for their readers.

What color is a meltdown?

“Black…by the time I am in a full blown meltdown mode, I feel the depths of despair. I feel like I just can’t fix it.” ~ Michelle Nahom, A Dish of Daily Life

“Clear. Like the color of vodka.” ~ Danielle Herzog, Martinis and Minivans

“I would say that depends on the nature of the meltdown. If it is an angry meltdown, it would be bright red. If it is a sad meltdown, then deep blue. Sometimes, there is even a meltdown born from panic. That one would be neon green.” ~ Lisa Witherspoon, The Golden Spoons

What comes to mind when you hear the word ‘meltdown’?

“Puddles…big puddles of kids (or moms) on the floor. You have to be very careful about stepping around the meltdown or you might get caught up in it. Kinda like quicksand, I guess.” ~ Rabia Lieber, The Liebers

“Someone curled up in the fetal position hiding in a corner. Or so I’ve heard.” ~ Jennifer Barbour, Another Jennifer
“Yelling and crying and ending up in a big heap of someone that you don’t recognize as yourself.” ~ AnnMarie Gubenko, Tidbits from the Queen of Chaos

What was your story about?

“My story was about the holiday havoc that went down in history. My son was sick, but we brought him to my parents’ house to celebrate Christmas anyway. Little did we know that we were about to set off a massive family flu pandemic. I was so stressed out from taking care of everyone that I ended up fainting! (One of my friends actually thought I made my story up…but I swear on the lives of my children, it’s 100% true. Sad…but true.)” ~ Marie Bollman, Make Your Own Damn Dinner

“My story is about how an ordinary day can go off the rails and head towards a meltdown before you realize it. Starting out with locking my keys in the car, and ending with my kids not doing the thing I’ve asked them (nagged them??) to do constantly. Meltdown city!” ~ Angela Keck, Writer Mom’s Blog

“It’s what REALLY happens when you find out your pregnant. From taking four pregnancy tests at once, to then driving directly to the OBGYN’s office holding my pee sticks; it was the meltdown before the baby was even born.” ~ Danielle Herzog, Martinis and Minivans

What did you like best about working on The Mother of All Meltdowns project?

“Hands down, my favorite part was getting to know all of the other collaborators and feeling less alone in my insanity!” ~ Rabia Lieber, The Liebers

“I loved being part of a group of terrific authors, bloggers and mothers! We come from all over the country and have different kinds of blog, yet we all have so much in common with each other, including our meltdowns.” ~ Ginny Marie, Lemon Drop Pie

“I loved putting together my story and realizing that it was just one part of a much bigger project. The most fun part of the project was when I got that first draft and read through all the stories and really got a sense of how it was all coming together.” ~ Karen B., Baking In A Tornado

What advice do you have for other mothers who melt from time-to-time?

“The next time you’re in a long check-out line, look at the person in front of you and know they’ve had a meltdown. Look at the person behind you and know they’ve had a meltdown. Go home and reread The Mother of All Meltdowns. You are not alone.” ~ Karen B., Baking In A Tornado

“Don’t pretend you can handle it all. If you’re stressed, talk about it. Motherhood is the toughest job there is. We can only get through it with the support of others who are going through it too. It’s okay not to be perfect, it’s okay to lose your cool, it’s okay to talk about it. We’re all in this together.” ~ Marie Bollman, Make Your Own Damn Dinner

“Meltdowns happen. I remember my mom (and dad) having meltdowns, and I do the same thing they did after blowing up at their kids. After we calm down, I take my kids in my arms and we cuddle, read a story, say we’re sorry and that we love each other.” ~ Ginny Marie, Lemon Drop Pie

What is your favorite story in the book? Why?

“Oh, there’s no way I could pick a favorite. I’d probably pick a different one depending on my mood throughout the day. That’s the beauty of the book. There are so many perspectives. At least one story will speak to you at any given time!” ~ Jennifer Barbour, Another Jennifer

“Do I really have to pick just one? I truly found myself nodding along with each one. Even if it was an occasion, like a teenager getting her driver’s, that I haven’t experienced yet, I still could understand the emotions. If I had to narrow it down, though, my two favorites were probably “A Dresser Full” by Ginny Marie (because I have TOTALLY been there with my daughter, too) and “The great Powdered Sugar Fight of 2007” by Marcia Kester Doyle (because it is a more joyful meltdown that actually sounded kind of fun!).” ~ Lisa Witherspoon, The Golden Spoons

“Let’s Pretend This Never Happened by Jennifer Barbour of Another Jennifer is one of my favorites because I can relate to trying to stay calm in public but then unleashing the frustration the minute you’re alone. Plus, I love a mom that admits she dropped the f-bomb since I’ve uttered that very word in a meltdown or two.” ~ AnnMarie Gubenko, Tidbits from the Queen of Chaos

Why should people buy the book?

“It’s freeing in a way. It makes you realize you aren’t alone. When you lose it, you feel like you’re the only one. But the reality is, we all have our moments. When we have a meltdown, it’s not just one thing that sets it off…it’s usually a series of events.” ~ Michelle Nahom, A Dish of Daily Life

“These stories could be shared by your best girlfriends sitting around a coffee shop and that’s exactly how it reads. It feels like you are sharing your worst moments with a group of women who totally get it. We could all use a little community in our lives and the feeling that we’re not on our own.” ~ Melissa Galileo, Completely Eclipsed

“To read talented writing! And just as importantly, I think if you are a parent, or you’re going to be a parent, or you had a parent, (so that makes everyone) you will be able to relate to these stories. Each one is unique and there are obviously many incidents that set us off into the land of meltdowns. It’s nice to get perspective because the 30 writers of our book tell very different stories, and each one is powerful in its own right.” ~ Tamara Bowman, Tamara (Like) Camera Blog

If you could associate any one song with the word meltdown, what would it be and why?

“I would choose “I’m Sexy And I Know It” – I have to keep telling myself that when I have a Goldfish stuck on my ass and spit up in my hair.” ~ Danielle Herzog, Martinis and Minivans

“I never thought about a song for meltdowns, first one that comes to mind is Hysteria by Def Leppard because a meltdown is definitely becoming hysterical! (And you’re welcome because I’m sure the song is now stuck in your head…)” ~ Angela Keck, Writer Mom’s Blog

“I can’t help thinking about “End of the World” by R.E.M. Just when he starts going off and singing all of those lyrics very fast and even if you Google the lyrics, you can’t quite repeat what he’s saying? That’s totally it for me.” ~ Tamara Bowman, Tamara (Like) Camera Blog

What made you want to contribute to The Mother of All Meltdowns?

“I think in some ways, it allowed me to look back on that time with fresh eyes and see what I learned from it. I think getting away from the stress would have been helpful for me. It’s not as if I didn’t have the support. My in laws live next door, and they were a tremendous help. But I was in a tunnel…my stress level was over the top at that point. Going through this also gave me a new respect for how precious life really is.” ~ Michelle Nahom, A Dish of Daily Life

“Honestly, I was a little intimidated at first because I wasn’t sure if I wanted to share my worst moment! What would people think? Then, I realized that I would love to read other mothers’ real stories of the challenges of motherhood and how it overwhelmed them sometimes. The great part is that we also share how we overcame the meltdowns. Being a part of such a talented group of writers was also a no brainer!” ~ Jennifer Barbour, Another Jennifer

“Several things made me want to contribute. For one thing, when I saw the list of others who would be contributing, I knew I was in excellent company and felt honored to be included on the project with them. I also liked the idea of the project – sharing our worst moments; laughing at ourselves a little, and, hopefully, offering some comfort to other mothers. Finally, I won’t lie – the knowledge that something I wrote was actually going to be published for the whole world to read was incredibly exciting (and it still is!).” ~ Lisa Witherspoon, The Golden Spoon

What’s next for you?

“I’ve been working on a couple of articles for Queen Latifah’s website, and one has been published already. Another story of mine will be in the book Chicken Soup for the Soul: The Dating Game, coming out in December. And of course, I’ll be writing on my blog, LemonDropPie.com. If Crystal has a follow-up project for The Mother of All Meltdowns, I’m in! It has been such a pleasure to be a part of this book.” ~ Ginny Marie, Lemon Drop Pie

“I’m writing a memoir about the letters my grandmother and I wrote to each other for over a decade. It’s the story of my life weaved through our correspondence. It’s her words of advice and wisdom she shared with me during my clueless thirty-something years of life.” ~ Danielle Herzog, Martinis and Minivans

“I’ll just keep muddling my way through motherhood and blogging about all my misadventures at Make Your Own Damn Dinner.” ~ Marie Bollman, Make Your Own Damn Dinner

Autism is just one color on the rainbow

27 Sep

I am doing an autism walk with and for Oli tomorrow. Because of that, I have been thinking a lot about what autism looks like and what it means in my family.

Oli was diagnosed with autism 3 years ago.

She was diagnosed by a team of specialists who specifically look at the differences between autism and blindness because they can appear on the outside to have shockingly similar behaviors.

Flapping in a typically developing sighted child is not part of normal (and I use that word loosely of course) development.

Flapping in a typically developing NON sighted child IS part of development.

A child speaking with echolalic patterns is not normal in a typically developing, sighted child.

Echolalia can be normal for a blind child.

Speaking, followed by a sudden lapse into being completely non verbal over a period of a few months, that is not caused by anything neurological…is NOT NORMAL in any child blind or sighted.

Yet this is exactly what my child did.

This is what led me to seek further answers by a team of specialists in Philadelphia.

This, along with other things, is what led to Oli’s diagnosis of autism.

So…there I was…3 years ago…raising a child with no vision, no language, and no way of communicating with me…

I was devastated.

This is the thing that kept running through my head,

“She can’t see. She can’t speak.”

Can you imagine, as a mother, what that feels like?

I had to face the reality that #1 Oli was never going to meet my gaze. She was never going to look into my eyes or look at me at all. I was never going to be able to look into her eyes and see an unspoken emotion that might lie hidden there. I was never going to be able to discern ANYTHING from her eyes.

And #2 Oli may never speak. I might never hear “I love you” roll off of her tongue.

(Granted, I might never hear the words “I hate you” either, spoken from the angst filled heart of a teenager, but that’s a different blog topic.)

Trying to explain this sadness to my family and friends was and still is difficult for me.

Most of them, when I do try and talk about it, respond with “Yeah but what if’s…” or “Yeah but it could be worse…”

They are right.

But it doesn’t make me feel any better.

I would rather hear “That must be hard” or “I’m sorry” or nothing at all.

I have found that the majority of the times that I do speak about the sadness, I do it NOT looking for answers to this problem. I am not looking for a solution to fix my heart. I am looking for an ear just to listen. I am only looking to get it off of my chest and express my sadness in words rather than bottle it all up inside and never speak about it. Which is what I did when she was born. I would rather tell you about it and leave it out there on the floor for those 5 minutes than carry it around with me for the next few days or weeks.

I know that Oli’s blindness is never going to be fixed or cured and it will never even improve. It just won’t. That’s life. That’s reality.

It took me longer to accept the fact that her autism will never be fixed or cured and it may never improve either.

But the truth is that it does not matter what label she has or what diagnosis she is given.

It doesn’t matter if those horrible evaluation histories label her as “Globally developmentally delayed” or “Autistic”.

It doesn’t matter because she still receives every possible service that would be available to her through either diagnosis.

And it doesn’t matter to me because that label says nothing about who she IS as a person. It may make her act a bit different on the outside. It may make language more difficult, but it will never define who she is as a person.

Just like the blindness will not define her.

It just won’t.

It took me a long time to figure that out too.

So today autism means less to me than it probably does to other people.

Autism for Oli is just one more color on the vibrant rainbow that makes her who she is on the outside.

But it can’t even come close to touching the spectacular kaleidoscope that she is on the inside.

And then there were two…

18 Jul

Last weekend I had the privilege of attending the ICAN conference in Chicago, IL. ICAN stands for the International Children’s Anophthalmia/Microphthalmia Network. Every two years, children and families from all over the world, travel to learn about and meet other people with anophthalmia and microphthalmia.

It’s always great to learn about the new technology available for blind people. It’s always fantastic to learn about new advancements in the treatment of these conditions.

But nothing beats what it feels like to look at another child or another family that knows exactly what your life is like.

No one knows what it’s like to raise a blind baby, to deal with the trials and tribulations of conformer therapy, to deal with other people who stare at your child…

Than other parents with a child just like yours.

No one knows about the breakdowns in the car because someone said something hurtful about your beautiful daughter…

Except another family who has walked in your shoes.

No one knows what it’s like to hide your newborn baby underneath a pile of blankets in her car seat because you just can’t stand to have one more person comment on how your very wiggly, giggly, very AWAKE baby, is sleeping because she can’t open her eyes…

Than the other mom who has had it happen to her.

The families that I met this weekend? Know EXACTLY what I’m talking about.

It’s so refreshing to talk about all of these things and to look into another mom’s eyes and see that flash of recognition. That spark of “Yes! Yes! That’s happened to me! That’s how I feel!” I don’t have to explain everything. Half the time, I didn’t even have to finish my story. I would get half way through and then see her head start to bob up and down and a knowing smile, play on her lips. Ahhhh…yes. You get it.

There was still some explaining to be done though. There were still a lot of walking, talking, interactive blind children running around the halls that weekend.

There were many many children who were NOT like my Oli.

To be honest…it makes me feel a little bit weird and strange to be around them. I feel kind of awkward. I don’t know what to say to a talking blind kid. Give me a non-verbal, blind kiddo with multiple disabilities and I feel right at home. Otherwise, I’m out in deep water. Do I offer my hand to them? How do I introduce myself? What do I say?

I’m just not used to it. I don’t know that life. I only know my own.

It was still pretty cool though. I was sitting at dinner and was watching a new friend talk to her son at the table. She was telling him where his knife and fork were. That there was a little lip on the edge of the plate. And then she took his hand and guided it over the plate to show him. I could only stare and smile and think to myself, “Yes. I must be doing it right. I do all of those things with Oli even though she can’t tell me if that’s correct or not. It must be, otherwise this other little boy would tell his mom that it wasn’t.” I need to see those kinds of things. I need to know that I’m doing it right with Oli.

There was one little girl that I just can’t get out of my head. A 14 year old girl from Italy. She was just like my Oli. After seeing her, I don’t think I’ll doubt Oli’s autism diagnosis again.

Little Eliza from Italy was JUST like Oli and she also has the diagnosis of autism. She too, is totally blind and non verbal.

Her and her parents sat next to us at dinner on Saturday. I had spoken to her parents a little during the day. The geneticist wanted me to talk to them about some different forms of communication techniques and tactile symbols, to use with her.

I knew that when they described her, I had that look on my face. I know that as I listened to her mother speak about her, I had that spark in my eyes. “Yes. Yes! I know exactly what you’re talking about.”

Meeting Eliza, was a whole different experience. I have never met another child that was like Oli. I mean like her in EVERY SINGLE WAY!

I couldn’t take my eyes off of her during dinner. Her mannerisms, behaviors, the way she moved her hands, the way she ate her food, the way she relied on her mom…it was ALL like Oli.

It may have been a little strange for her parents. More than once they caught me with my mouth hanging open, looking like an a-hole, staring, smiling, and nodding in their daughter’s direction. More than once I had to excuse myself and say, “Oh my gosh!! She’s just so much like my daughter!! I’ve never seen that before! I’m sorry for staring.”

More than once I felt like bursting into tears because I was just so happy that I had found another mom who knew what it was like.

There are, of course, other children born blind and who have the autism diagnosis. I’ve met some of them.

They were not like Oli.

I later asked the genetic counselor at the convention what made Eliza and Oli so similar. They have the same eye condition, but different gene deletions. Oli is missing the OTX2 gene, while Eliza is missing the SOX2 gene.

She couldn’t really give me a definite answer, other than to say that there had to be some genetic correlation that caused the blindness and the autism. Somewhere in those genes lies the answer, or rather, the missing answer to the puzzle. Something about those missing genes that caused their eyes not to develop and then whatever caused the autism, is the same in Oli and Eliza.

It was fascinating.

The next day when it was time to leave, I said good bye to Eliza at breakfast. She took my hand in hers and ran her fingers over and over my palm. She found my ring and was twisting it around. She smiled and smiled… Her mom said, “Wow! She really likes you!” I told her “I know. It’s because I just totally understand her. It’s because we have this bond that ties us together. It’s because of Oli.”

And that is the story of the day that I finally met another child like Oli.

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