Tag Archives: dads

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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I am a child.

20 May

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

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

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

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

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

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

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

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

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

Despite our differences, I’m still a child.

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

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

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

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

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

I am my parent’s child.

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

Neither should you.

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

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

Just remember…

I am a child.

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

I’m just Oli.”

Leaving a child behind

1 May

After what seemed like an hour, but was more likely only a few minutes, I dared to sneak a glance at my husband. His face was a silhouette against the window of our car. With the sun setting orange behind him I could just make out the corners of his lips turning upwards in a smile.

“Move? You really think we need to move?” He asked, sparing a glance at me and momentarily taking his eyes off the road.

“I do. I think that we really should. Oli’s vision teacher is always telling us how great Austin, TX is. I think we should look into it.” I answer.

“Okay. I’m in. She just isn’t getting the amount of services that she needs. She needs occupational therapy and speech. She needs more physical therapy and orientation and mobility. I agree. Las Vegas, NV is definitely not the best place to raise a special needs daughter. Let me talk to my company and see what they can do. Maybe I could somehow transfer.”

And that was it.

The decision to move my family was made on a hot summer day in August 2009 on the drive back from California after a trip there for my birthday.

There were no arguments and no one resisted the change. We simply decided to move.

Bittersweet tears were shed by my husband. He was happy for Oli, but sad for who he was leaving behind. Moving to Texas meant leaving his two sisters, two nephews, one niece and his mother behind in Vegas. It also meant moving much, much farther away from his daughter, my step daughter Thalia, who lived with her mother in San Diego, CA. She was 11 years old at the time.

I didn’t appreciate then what an enormous amount of strength and courage that decision took for him. What it meant to leave a child and move somewhere where he would only see her once every 6-9 months instead of every month. He made the type of decision for Oli, which I’m not sure that I could have ever made. He made a choice to help one child, who may have needed it more, with the sacrifice of not seeing the other. Their relationship would remain tightly intact via computers and nightly phone calls. Many many phone calls.

And many many tears.

Many tears of sadness and loneliness were, and still are, shed on behalf of Thalia.

Some days he gets lost without his oldest daughter.

Sometimes I wonder if he regrets leaving.

I wonder if he thinks it was worth it.

I’m sure most days he thinks that it was. And then. . .I’m sure there are others where the pain and the sadness are too much. Days where he longs to feel the touch of her sweet embrace and see the warmth of her beautiful smile.

I do know that every day he misses her. Every. Single. Day.

We both do.

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