Tag Archives: love

Where was my key?

9 Jan

I used to read blogs and find links on the internet after Oli was born about children with special needs. More specifically I looked for those words describing BLIND children with special needs. Blind. They had to be totally and completely blind or I couldn’t relate. They couldn’t be JUST blind either. They had to have other disabilities. Other delays, or I couldn’t relate. The children couldn’t be too much older, they couldn’t live in another country, they couldn’t be able to walk or crawl… or I couldn’t relate.
Looking back on it now, I just couldn’t relate to anyone.
I would find the differences in the people, circumstances, and situations so that I was left standing utterly alone, unable to find comfort in any of the sentences that I read on the screen.
Reading those words and seeing the hope and the progress as the parents of these children reveled in their accomplishments, left me yearning to find the key that opened the door to their secret world.
The world, in which people who believed in their special children and accepted them, lived.

Where was my key?

How do you learn about all of the differences in your child, how do you sit through evaluation after evaluation of disappointing prospects and yet still find the key to acceptance?
How do you get to that place?
I sought out those stories of the milestones these children met, delayed yes, but nonetheless met, and wondered if my girl would ever do any of those things.
I wasn’t sure that she would.
I tried to compare her to similar children (when I found them which was rare) and felt defeat after defeat as they surpassed her by miles.
They learned to crawl and walk and talk and when my daughter reached that same age? She just didn’t.
The remorse and regret and guilt of all the possible things that I could have done different or better or faster… It just crushed me.
When she didn’t do the things that I thought she should do, I felt like such a failure as a mother.
I had failed her.
I hated that feeling, but I just couldn’t make it disappear.
I met lots of doctors who, when asked questions of what she would do, responded with shadows of “might not”‘s.
I also met lots of therapists who replied to the same questions with cheerful “might”‘s.
I tended to drift and focus more on the might nots.
When I would try to discuss my fears of the future with people, and I did so rarely, they responded as people do.
They told me to believe that she would grow up normally. They told me that my fears were silly and that I shouldn’t think such things.
They told me to look on the bright side.
Easy to do when it’s not happening to your child.
In truth, they were well meaning people with good hearts who wanted to help me but were completely
clueless.
Sometimes it’s hard to talk to people like me.
People who, when in such a place of darkness, find fault with every well meant comment or upbeat possibility.

Where was that key?

As time passed I just stopped talking about it. I didn’t want to be the downer of the conversation wallowing in all of the shame I felt. The self pity, that I didn’t see as self pity, but most definitely was.
I couldn’t talk about the guilt.
Who do you tell when you have feelings like that?
God?
Ummmmm…. No.
God and I were definitely NOT on speaking terms after Oli was born.
How could HE let this happen to a child? To MY child more importantly.
My husband?
No.
I felt like it was all my fault and I couldn’t admit that to him.
I guess I felt that it was his fault too.
Like this was something that we had done to her. Something that shouldn’t have happened.
I couldn’t tell him that.
My friends.
No. We already talked about that up there^^.
My mom?
Nope. Not her either. Too much guilt. Too much shame.
What had I done to her very first granddaughter?
Sooooo… that left?
No one.
Except it didn’t really.
It turns out there were a few people that I would meet along the way that would help me to find my key.
People who had been in and out of my house since this whole thing happened.
People who saw mothers like me and children like Oli every single day.

They were the therapists who worked with my daughter.

Not all of them were warm and cuddly.
Not all of them were inviting.
Not all of them I could open up to.
But some of them… I could.
Some of them had a compassion and a keen sense of understanding for a situation that they had never lived.
Some of them didn’t even have children of their own!
But it didn’t matter.
For some reason they had the right tone of voice, they said the right words, they were silent when I needed them to be, and the outer shell that I had created began to dissolve.
It turns out that I met a succession of these therapists in the exact right time in my life where I was able to hear them.
I was able to be honest about my fears and my wounds and as I listened they began to heal me.

In the beginning I guess they couldn’t help me because I was so engrossed in putting on a good front. I was so focused on pretending to be strong that I never let my fear seep through the words of strength that I wove together.
I didn’t feel like I could tell anyone let alone a stranger!
I ended up learning that sometimes a stranger is a heck of a lot easier to talk with.
Especially a stranger that isn’t really stranger because they come into my house every week and watch me fold laundry (including my underwear that likes to fall out of the basket at the most I inopportune times!)
They watch my children bicker and me burn the dinner.
They watch my 3 year old run out of the bathroom naked from the waist down and listen as she recounts less than savory tales of our household.
Basically they just see us…as us.
They see me…as me.
Eventually it becomes very difficult not to open up to someone who sees you as you are.
It might have started with a simple question.
“So how are you doing with all of this?”
Followed by a quiet stare as I repeated my all too well known response to that question.
“Fine.”
It might might have started with that stare that bore through my soul.
That stare that unequivocally meant
“No really. I know you can’t be fine so how are you?”
I don’t really remember, but I know it started with them.
It started with them showing kindness and empathy and it started with a trust that developed between us.
As I allowed the door of communication to be opened, as I began to finally relate with people who understood me, they began to lead me down a path towards finding my key.
My key to peace.
My key to happiness.

My key to acceptance.

…to be continued.
First part of an upcoming speech on communication between team members.

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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

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.

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?

I used to wonder if she would ever have friends.

29 May

As I waited at school with Oli after her therapy, a remarkable thing happened. I watched my daughter interact with two little girls in her kindergarten class. Oli isn’t in her kindergarten class regularly. She is in an FLC (functional learning class). She does attend music twice a week with them and has gone on a field trip with their class.

What I witnessed today at her school…will never be forgotten.

To the little girls I watched in the elementary school hallway, this letter is for you.

Dear little girls,

I watched you today as you walked past us. You were lined up with your class on the way to the library. You looked over towards the entrance and stared at Oli, walking in with me. She was holding my hand, shaking her head, flapping her other hand and humming loudly.

I don’t think you were staring at those things though.

You were staring at your friend as she returned to school.

You both ran excitedly up to her calling her name. “Oli! Oli! It’s Oli! Hi Oli! How are you?”

You touched her arm, leaned in close and said hi again. Then each of you took turns hugging my girl.

You talked to her, touched her and hugged her like you were her best friends. Like she belonged with you. Like you never even noticed that she was any different from you.

It seemed like you didn’t notice that she couldn’t share secrets with you, play like other kids or run and jump on the playground.

Those things didn’t matter to you.

You just treated her like she was your friend.

You didn’t see her face light up behind your back as your arms were wrapped tightly around her. You didn’t see the peace in her hands as she gently ran them down your braid. You didn’t see the light radiate from her smile as you talked to her.

I saw.

You didn’t see the tears well up in my eyes either.

You won’t know how I will forever treasure that moment.

You see girls, when you have a child that is born different from other children, you have certain fears. Certain things that absolutely terrify you. You pray with all of your heart and dream that it will be different and that your fears will not become her reality.

You fear that other kids will be mean to your child. You fear the bullies and the hateful words that can spew from heartless people. You fear that your child won’t have any friends.

You dream that people will understand her. You dream that kids will look past her differences and treat her with compassion and understanding. You dream that your child will never walk the halls, eat lunch or play at recess alone.

As I watched you with Oli today, I saw that everything that I have ever dreamt for her…was standing right before me. It was present in the quiet voices, the gentle touch and the shy smiles that took place between the three of you.

It was present in your friendship.

You’ll never understand what you have done for me today. I don’t even think you’ll understand what you have done for Oli.

I understand though. I know what it means to have children who love her for who she is.

If my daughter grows up around children like you…she will NEVER feel apart from. She will ALWAYS feel a part of.

In your single act of kindness, something that you didn’t even think twice of before acting on, you have erased some of my fears.

I will sleep well tonight, little girls.

I will sleep well knowing that my daughter is not alone and that she has people like you to walk beside her.

Thank you.

From the bottom of my heart…

Thank you.

*tears* Oli has friends.

I have been Carly’d, Stevie Wonder’d, Ray Charles’d and Andrea Bocelli’d.

23 May

I read a post the other day written by Living on the spectrum: The Connor Chronicles called “Have you been Carly’d recently? The blogger has a child with autism and she talks about people comparing her child to Carly. You can read her fantastic post HERE.

If you have a child with autism you know Carly. The amazing autistic girl featured on 20/20. You can watch that video HERE.

Carly was completely non-verbal and autism rendered her unable to communicate with anyone until she found that she could use a computer. Once she discovered speech and language through a keyboard, her entire world opened up. She was discovered to be a “normal” highly intelligent young girl locked within the confines of her own body without the use of her voice. Her fingers became her voice and a link between her and the rest of the world was forged.

It’s truly an amazing and remarkable story.

Unfortunately…it is also a very very uncommon occurrence.

Most of the children who are autistic will not have an experience like Carly. 40% of children with autism also have the diagnosis of an intellectual disability.

Oli has that dual diagnosis along with several others.

Oli will probably never have a Carly experience. She might…but she probably won’t for several other reasons. Her diagnoses plus her blindness complicates matters. It’s perfectly fine if she doesn’t end up being like Carly. She will find her voice in another way.

Many autism families have been Carly’d.

Strangers, friends and family say “Hey! Have you heard of Carly? I bet that can happen to your child too!” This is what the Connor Chronicles blogger specifically wrote about.

I have been Carly’d.

A lot of us probably have been, by well meaning, good hearted people, who just want to give us hope.

The most interesting thing is that I have been Carly’d. I have been Stevie Wonder’d. I’ve been Ray Charles’d. I have been Andrea Bocelli’d. I think that it just happens when you have a child with a disability. People look to that one person with a similar condition that has gone above and beyond and exceeded all expectations of the prognosis laid upon him.

When Oli was born people would always tell me stories of so and so who was blind and did this amazing thing or that amazing thing. They would tell me that she would probably grow up to be a famous musician or a composer. A singer, a piano player, a drummer, a guitarist…because you know Stevie Wonder is blind and he’s musically inclined. So Oli will be too because she’s blind. All blind people have musical talents.

Ummm…well? Not really. No. She’s doesn’t really.

She loves music. She really really loves it.

However… Musically inclined? Not so much.

She loves to bang on everything. Is that drumming? I could probably put her in a heavy metal band and maybe no one would know the difference.

She doesn’t know how to keep a tempo. She bangs on the keys of a piano. She can’t actually “play” anything. She does love music, but I’m not so sure that she will ever be like Stevie Wonder.

And that’s okay.

Oli is Oli. She doesn’t have to be anyone else.

I really think that we need to stop trying to compare our kids with disabilities to others who have a similar diagnosis, but not so common outcomes.

If my African American friend had a baby I wouldn’t look at her and say “Do you know Michael Jordan? I bet your baby will be just like him because he’s black.” Ridiculous right?!

In a sense, that’s basically what we are doing when we say these types of things to parents of special needs kids. We’re placing extremely high expectations on that child and that parent because WE are uncomfortable. Because WE don’t know what else to say. Because WE want to give hope to that parent. Because we WANT to say the right thing.

The truth is…that parent might not need that kind of hope.

That parent probably already believes in that child and knows that they will be an amazing individual regardless of what others before them have done.

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.”

Special kids make parents special.

15 May

Special kids make parents special. Special needs kids are not brought to special parents.

This…is my truth.

Before I start I must state that these are MY beliefs and mine only. I know that everyone has their own opinions of these types of things and I do not mean to be disrespectful or offend anyone. This is simply something that I think and that I felt like writing about today.

I do not believe that I have some kind of special characteristic or that I was CHOSEN to be the parent of a special needs child. I like the idea of that, but I don’t really believe it. To truly believe that, places me on some kind of high pedestal above everyone else. To say that, would be saying that I possess some kind of super human mother strength that has allowed me to endure, maintain, and overcome something that other mothers could not have done.

This isn’t true.

Many people say to me “I just don’t know how you do it? It must be so incredibly hard. I could never do what you do.” My response is “Yes you could. Yes you would. If this had happened to a child of yours, you would do what I have done and what I do. You would have no other choice.”

I didn’t have a choice.

I was a good mother before I had Oli. Logic would indicate that I would be a pretty good mother regardless of what type of child that I had. I don’t think that I do anything extraordinary. I think that through the progression of dealing with what I have, I have been incredibly slow to learn to live with it.

When I write the story part of my blog I write it as it was back then. Not as it is right now. When I talk about the loneliness, the sadness, the self-pity, self-hatred, blame, regret, remorse…that’s how I felt back then, not how I feel right now. I have learned to accept, embrace, and move on from believing that this is something that happened TO ME.

This did not happen to me. This happened to Oli.

Ever since Oli was born I have acted in a way that I did not feel inside. I have always ACTED like it was all fine and that I was okay with her disabilities and her struggles. Because I never wanted her to feel like she was any different. I never wanted her to see that I felt sorry for her. I never wanted her to feel my tears stream down my face or feel my body shake as I shuddered with grief.

I acted how I didn’t feel inside because I wanted to feel what everyone else did. I wanted to feel peaceful with it. I wanted to get to that elusive acceptance part that other parents would talk to me about.

Where was it? How do you get there? I use to cry and beg my husband “Tell me what to do! Tell me how you feel how you feel!”

It was only not too long ago that I finally started believing it all for myself. I’m not saying that I feel okay with her struggles. I will never be okay watching my baby girl’s difficulties. What I am okay with now, is who she is as a person.
I am okay with what makes her Oli.

If you have a child like her or have fought with your own demons, you know what a tremendous accomplishment this is. This was huge for me. This took away all of the guilt that I felt since the day she was born. This also took away the pressure of believing that I had to live up to that super human mother strength. This took away the pressure of trying to do this thing perfectly.

When people would say things like “God gave her to you for a reason” I thought that it meant that I had to be perfect. Because if God had given her to me for a reason, then I must do something amazing with this gift. I must be the perfect mother because I was CHOSEN.

I had to stop believing all that because it was just too much pressure. It was too much. I would beat myself up if I made mistakes and punish myself for feeling the way that I did. I would chastise myself because if GOD had handpicked me for this incredible task…then I was failing miserably. God wouldn’t want me to feel sorry for myself. God wouldn’t want me to feel sorry for her. God must be sorry that he chose me. Those thoughts began to consume me and I sunk lower and lower. Those words of my being blessed by a gift from God did nothing, but make me feel worse.

I do believe in God. I do believe that there is plan and a power greater than me that is running the show, but I don’t necessarily believe that I was specifically chosen. I believe that this just happened.

This might sound contradictory. It probably does. It’s hard to explain in words.

I guess just the fact that God, the big cheese, picked little old imperfect me specifically for this huge responsibility freaks me out a little bit. Okay. It freaks me out a lot. Those are impossibly huge, scary shoes to fill. Those are measurements that I just can’t possibly live up to.

I make mistakes. I mess up. I’m not perfect. I never will be. This is a learning process and unfortunately part of life is messing up. It’s making mistakes, but learning from them.

If you have spoken the words “God gave her to you for a reason” to me please know that I really appreciate it. Know that I don’t get upset or cringe anymore. I know that when people say those things it’s because they really believe them and it comes from a good place. I know that they are words of encouragement. I really don’t mind. I just wanted to talk about why I don’t say it to other people and why I hated being told that in the beginning.

The only thing that makes me special today is being the luckiest mom in the world to 3 beautiful children. One of them just happens to be special needs.

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