Archive | June, 2013

When the sun goes down and the rainbows disappear.

18 Jun

It’s almost time for Oli to start summer school. She goes for 4 hours a day, 4 days a week, for 5 weeks. She has gone to summer school every year since she began going to school at 3 years of age. ESY (extended school year) is for special needs kids who have shown regression over the Christmas break. If you regress, you go to summer school.

It’s a win, lose situation for us. It’s great that she gets to go because summer break is so long, I don’t want her losing any of her skills, and she really likes school. It gives her more of a structured day and a schedule, which she does well with. It’s bad because it means that she isn’t doing as well as some of the other kids. I guess it makes me a little sad because she NEEDS it. Although, her teachers have told me every year (the 3rd year now) that they are qualifying her based on the emergence of critical skills. Walking and talking. I’m not sure if these really were emerging at the time of her evaluation though.
When they qualified her for ESY this year she wasn’t talking again yet. She didn’t start that until a few weeks before school got out. They agreed on ESY sometime after Christmas. Her walking skills have improved over the last 3 years since she took her first steps. I wouldn’t classify this as emerging however. She’s stronger now, but her walking isn’t that much different than when she was 4 or 5. I think it’s mostly a balance problem. I’m hoping that one day her balance will get better. It has, little by little, year by year, but it’s a slow process.

All that being said…she gets to participate in summer school. With all the other kids who NEED to be there. Who cannot afford to have a regular summer vacation like all of the other kids. This is the part that is hard to swallow. She isn’t like the rest of the kids. She never will be. This is both wonderfully special and woefully heartbreaking.

I try to be positive and upbeat. I focus on what she can do, how far she has come, and the progress she’s made. I try to focus on all of her abilities and not her disabilities. But I would be a terrible, fake, fraud if I told you that I never get sad or mourn her struggles. If I told you that I never get angry at the injustice and unfairness of her multiple disabilities.

Here’s part of the real, honest truth. I get sad. I get sad a lot. Not every day. Not even every couple of days, but it happens. When she’s having an especially hard day and the meltdowns become epic, and the tears become frequent and she refuses to walk and she doesn’t speak a word, and it feels like the day will last forever, I remember exactly how much she is NOT like other children. I am faced with how different she is. I am reminded of what makes me a different kind of mother. I’m not very fond of those days because I REALLY want to be like you. Most days I try to pretend that I am. Most days I treat Oli like she is just like your child. And then we have those days where I just can’t pretend and I can’t ignore the fact that she’s not.

It’s during those days that it becomes hard to chronicle our story and write about our journey through our unique life. I mostly wrote about the positive and people always love reading about the warm fuzzy encounters we have. The pink cloud moments where everyone is smiling and life is full of rainbows and roses. Everyone knows though, this is not always the reality of our situation.

No ones reality looks like that all of the time. So sometimes I’ll write about the hard times, the sad emotions, the tears, and the fear…in the hopes of portraying an accurate account of her life. Of my life. I’ll write it knowing that people will worry about me, they will worry about her, they will question my strength, they will be afraid to offer words of comfort, they will offer too many, they will feel sorry for us, and they will be glad that they don’t have a special needs child. I will write it knowing that some people will not want to hear about this part, they will refuse to read about the struggles because life is easier when you don’t know about the difficulties of it all. Life is easier when you ignore the pain and only celebrate the happiness. I know. I was like that too. Some days…I still am. People may choose not to read this part, but hopefully… they will come back. Hopefully, people will continue to be inspired and hopeful about my daughter even when I describe my hard days. Even when I talk about my pain and disappointment.

Because this is our life. We live life on life’s terms through the good, the bad, the smiles, and the tears.

And I really wouldn’t want it any other way.

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Mother Moments

14 Jun

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

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

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

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

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

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

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

“Was I doing it right?”

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

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

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

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

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

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

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

I didn’t know.

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

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

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

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

I ended up somewhere in the middle.

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

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

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

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

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

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

Those are some of my moments today.

What is it like to have a special needs sister? A 7 year old gives his opinion.

13 Jun

I wonder all the time what it is like growing up as the sibling of a special needs child. My 7 year old son, Kekoa, opened up and answered some questions about life with Oli.

What is the very first memory you have of Oli?
-“I think the first thing that I saw about Oli was that she was blind. Well that, she had ummm…she had no eyes and that was kind of creepy at first.”

Do you remember her getting her first pair of real looking eyes?
-“Ummm..I think I remember. I just saw online that she had the clear ones first.”

What do you want people to know about Oli?
-“I want people to know that just because she doesn’t have eyes, doesn’t mean that she doesn’t know what you’re saying. She understands whatever you say. You should talk to her normal.”

How does it make you feel if people stare at her or say mean things to her?
-“It makes me feel sad. It makes me feel like I’M the person being bullied by those people because she’s my sister.”

What would you say to those people?
-“She’s a normal person. She just doesn’t have eyes.”

What does it feel like to have a sister with a disability?
-“I’m just worried about people being mean to her. Sometimes I worry about her falling down and getting really hurt. I worry about her having to go to the hospital.”

Do you remember the first time Oli had a big seizure and had to be taken to the hospital by ambulance?
-“Yes. I remember daddy telling me to go upstairs. I remember wondering if she was going to be okay. Or was she not. I was just really worried that she wasn’t going to be okay that time.”

Do your friends ask you questions about Oli?
-“Yes. A bunch of times. They ask me like ‘Can she blink?’ I say yes. ‘Why does she have fake eyes?’ I say that people will accept her more because she looks like everyone else. I don’t think it’s very important to look like everyone else because everybody has differences and God just made us that way. That’s the way He wants us to be.”

Are you excited that she started talking again?
-“Yes. Very excited. I think that since she started talking, she’ll start doing other stuff too.”

What kind of stuff do you want her to be able to do?
-“I want her to be able to walk. To have lots of friends. I want her to be able to like do normal things like everybody. I want her to be able to play with me.”

Is it hard at home to have a special needs sister?
-“Sometimes. Because it’s hard to do stuff and concentrate when she’s crying.”

Is it hard because she has lots of therapy and doctor appointments?
-“Well no. Not really.”

Is it hard because it takes more time away from you, for mommy and daddy to help her?
-“Yes. You guys spend more time with Oli, helping her do things, than Ginger and I do. You guys just know more about her than we do. I like to help her. I like to help her walk. I like to hold her hand.”

If you had one wish for Oli, what would it be?
-“I would wish that she would be able to see. And that’s it. I just wish she could see because it would be easier for her.”

If she was autistic…where did that leave me?

7 Jun

When Oli was two years old, a few drastic changes took place in her life. We moved 1500 miles away. We moved away from one of her grandmas, her aunties, her cousins, and the only house she ever knew. We moved away from her sister.

At the time that we moved, Oli was still taking. On the drive down she repeated the words “up” and “out” over and over and over. It was a looooong drive. I remember that we stopped for breakfast one morning on the second day. My mom asked her what she wanted for breakfast. Oli answered “eggs” and then clapped enthusiastically. My girl loves eggs. She also said “Mom. Dad. Grandma. Koa. Milk. Juice. Eat. Hi. Bye.” Those are just a few.

Six months after we got to Texas, I had another baby. By this point her speech had already started to decline. Ginger was born in March 2010 and by September, Oli had completely stopped speaking.

She did NOT do well when Ginger was born. None of us did. Ginger cried all the time, day and night for 4 months straight. I couldn’t put her down. Ever. She was either eating or crying. She rarely slept. Oli was stressed out and hated the baby. If she heard Ginger near her she would scrunch up her face and push her away. If I tried to get her to hold the baby she would cry. She didn’t understand what she was or why she was so loud.

Oli started stimming more and more. She stopped repeating simple words and didn’t use the words that had been frequent in her vocabulary six months prior.

By Christmas of that year I knew that something had happened. Something else was wrong that had caused her to stop talking. Was it the stress of the move and the birth of her sister? Or was it something else?

I knew that I couldn’t just take her to a regular doctor to evaluate her. Blindness complicated the diagnosis and I didn’t want them to misdiagnose her or misinterpret her behaviors (blindisms) as autistic behaviors because in blind kids they are not.
Most kids born blind have a lot of the same self-stimulatory behaviors that autistic kids have. They have a lot of the same sensory issues too.

Oli constantly shakes her head back and forth. Continually. All day long. (Think Stevie Wonder.) She has done this since she was a year old. She started flapping her hands around 2 years old. She loves to spin and swing and she’ll rock violently back and forth when she’s mad. She’s always seeking more and more input because she is missing the main way that human beings get their information. Through our sight. She puts everything in her mouth. Blind children typically go through a longer oral stage because of the reason I stated above. This is just one more way to get information if you can’t see it.

None of those things set off any alarm bells though. I knew that was just her blindness.

What DID set my heart racing and began to fill it with unspeakable dread and fear? What one thing lead me to question what was wrong with her?

Why did she stop speaking?

It felt like one day she was talking and the next day she just wasn’t.

What would cause this to happen?

One terrifying word came into my mind.

Autism.

I called the research center for anophthalmic and microphthalmic children. The Albert Einstein Medical Center in Philadelphia. I made her an appointment for an evaluation. They had developed a specific clinic staffed with experts on blindness to determine if our kiddos really were autistic or if their behaviors and characteristics were simply the results of being born blind. Many of our kids were receiving the diagnosis of autism when they weren’t and many of them were not being given the label when they were. That team was supposed to be able to clarify and correct the appropriate clinical diagnosis.

So I flew her to Pennsylvania and asked them the million dollar question.

Was my baby girl autistic?

During the months leading up to that evaluation I began to question, pray, bargain, and plead with a God that I had started to lose faith in. I began to cry and scream at him “You made her blind! You made her physically and developmentally delayed! Don’t make her autistic too! Please! I will do anything! ANYTHNG! Don’t make my baby autistic too!”

I laid in bed at night questioning my very life and existence. I began asking questions that I would never receive answers to.

I wondered why He would do this to her? Why would He do this to me?
Why had my life been so easy before? Why had it become so hard?
When was my nightmare going to be over? When was I going to wake up?
The more I prayed and pleaded…the farther away I drifted.
The more questions I asked…the less answers I received.

I flew Oli to Philadelphia with a heavy heart, a stomach full of knots, and an empty soul.

Where was my God? Would He answer my prayers?

I feared that I already knew the answer to those questions.

Where did that leave me now?

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