Tag Archives: special needs kids

I never said it would be easy

29 Mar

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

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

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

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

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

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

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

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

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

I was fine.

I would say it to everyone.

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

I. Was. Not. Fine.

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

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

Let’s be honest here.

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

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

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

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

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

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

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

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

No. That was totally unacceptable.

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

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

To be more than okay with it all.

To be happy.

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

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

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

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

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

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

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

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

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

It makes me really sad mom.

9 Feb

I got the call that I am always terrified to get when I’m away from Oli.

“Shannon. Something is wrong with Oli. I think I need to call an ambulance.”

My heart fell to the floor and stayed there until she was wheeled into the ER on a stretcher and I could see her.

“What do you mean? What’s wrong?” I asked as my heart raced, but my mind cleared.

“Well she’s breathing really funny. Like holding her breath and I can’t keep her awake. Here. Listen.” My mom, who had been home with her while I took my other two kids to a horse vaulting stable, put the phone up to Oli’s lips.
I hear a strange grunting sound coming from my daughter.

“She’s been doing this for a while now and it’s getting worse. When she falls asleep it’s better, but as soon as she stirs she does it again.

“Mom. Listen. Lift up her shirt. Can you see her ribs or her sternum as she breathes? Does it look like she’s sucking in?”

My mom quickly checks. “No. No I don’t see that.”

“Okay good. What about her lips? Are they pink or do they look blue?”

“They’re really pale. I just don’t feel right about this. I feel like something is really wrong with her. She just keeps falling asleep.”

“Mom. Do you feel like you should call an ambulance?” I ask calmly. Going into more nurse mode at this point than mother mode.

“I’m not sure. Maybe. Something is wrong with her breathing.” She answers. I can hear the fear in her voice.

“Okay. If there is even a question that maybe you should, I need you to call. I am at least an hour away and by the time I get there to check her, things could have gone dramatically downhill. My phone is almost dead. I only have about 10% battery left. I’m going to call Seth and tell him to go home right now. I’ll have him call you on the way. He should be there in 10 minutes. Hang up and call 911.”

“Okay.”

I hang up and quickly call my husband.

No answer.

I call again.

No answer.

Oh my god. My phone is going dead.

I shoot him a quick text.

‘Call me NOW.’

He calls back immediately.

“Seth. I need to you to go home right now. Oli is not breathing right.”

“I’m on my way.” He replies in a calm voice.

I start to tell him that I’m leaving the stable now and that I’ll be about an hour…but he’s gone. I’m talking to dead air.

That morning Oli woke up happy. My mom and I had plans to take all three kids down to a stable in south Austin where their horse vaulting team has a Barn Buddies day once a month to raise money. The kids get to come down, learn some tricks on the barrels, and then get up on the horse to practice them with an experienced horse vaulter.

After Oli got up on Saturday morning she fell back asleep right after breakfast. I sent my mom a text and told her that maybe Oli shouldn’t go. I thought maybe she wasn’t feeling very well. My mom decided that she would just stay home with her and that I would take the other two kids and our dog. Shaka had service dog training right after the kids were done riding.

When I left, Oli was playing happily with her toys.

Kekoa and Ginger had an awesome time on the horses. It was really great because they always watch Oli ride at hippotherapy, but never get to ride themselves.

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That morning of fun quickly turned into a nightmare.

This was not Oli’s first ambulance ride.

Not even her second.

Her first executive ride to the hospital was one of the absolute worst days of my life.

October 4, 2011 is a day I will never, ever forget. Never.

That morning I woke up next to Oli violently convulsing and gasping for breath. She ended up being intubated with a machine breathing for her for two days.

The next ride was August 26, 2012.

And the last was on Saturday February 7, 2014.

I’d like to say that this will be her last, but I know that it might not be.

Her seizures, any person’s seizures, are no joke. I know that lots of kids have them. Some have hundreds a day. Some are lucky like Oli and only have them once in a while.

It’s really all about perspective. I don’t know anything but what I know about Oli. Her journey is no more or less than anyone else’s. We only know the life we live so it’s important not to minimize or over exaggerate something that we have no experience in.

I get really uncomfortable when I meet someone and they say “I just don’t know how you do it?! I could never do what you do!”

Yes you could. Yes you would.

I find myself thinking those same things though when talking with my friend who has a daughter who literally can have 100 seizures per day.

How does she get through it? How would I?

But I don’t have to worry about that because that’s not our life. I can talk with her about it. I can tell her how extremely terrified I was to get that call. I can tell her how Oli wasn’t breathing well and how awful it was because I’m sure she had more than one seizure yesterday. Like maybe 3 or 4 or 5. (I don’t know because they were seizures that we couldn’t see.)

And you know what she says? Not “Well that’s NOTHING! You should be grateful it was only a couple. My daughter…” Blah blah blah.

Nope. She doesn’t say any of those things.

She says “Wow! How scary! Do you need anything? Do you want to talk about it? How can I help you get through this?”

She validates my reality.

She doesn’t compare it.

That is powerful.
So incredible powerful.

I hear people compare themselves and their struggles to other families all the time.
Why?
Why are we judging when we should be supporting?

I’m so lucky to have so many incredible families in my life who do just that.
They support Oli. They support me. They support my kids and my husband.

We desperately need support because scenarios like the one we had on Saturday, do not leave a family unscathed.

The words I spoke to my children in the van as we left the stable, will not soon be forgotten.

Especially by my 8 year old son.

“What’s wrong mom? Why aren’t we going to take Shaka to training?”

“Your sister is having trouble breathing and is on her way to the hospital. We need to go there now.”

He immediately becomes quiet.

My three year old, Ginger, does the exact opposite. She has a million questions.

“What do you mean? What is she doing? I’m hungry. Can we stop for lunch? Can I have a snack? Do you have any juice? Are we going to see Grandma now? Are we going to Shaka’s training? Where’s Oli? Where is she going? Where are we going again?”

Oh. My. God. Ginger.

Ginger is either the best person to have with you in a crisis or the absolute worst.

I’m leaning towards the worst. 🙂

It was good because she was distracting me with her 5 billion questions and it was frustrating because I was trying to figure out where I was going, who was going to take the dog, which hospital they were taking her to? Did my husband get home? Are they on their way? When was Ginger going to STOP TALKING!

I got a hold of my friend, Cat, who just happened to be at the stable with me.

“Cat. I need you to come get the dog. Oli is being taken to the hospital by ambulance. They’re taking her to Dell Children’s.” I speak rapidly into the phone.

“I’m on my way.”

Man I have some good friends and family.

I had so many people texting and messaging me, offering kind words, support, and offers to watch my other two kids. It was very very humbling to realize how many people were willing to drop what they were doing and help.

Once we got to the hospital Kekoa was even quieter and Ginger even more inquisitive.

Fortunately Cat got there as soon as I did and took the two kids before Oli was wheeled into the room.

We didn’t know what to expect, but I knew I didn’t want my kids to see her surrounded by hospital staff, talking, asking questions, and working on Oli.

My son has already seen too much in his short 8 years.

Once Oli got there she was breathing better. She was doing some breath holding off and on, but didn’t seem to be in distress. She definitely wasn’t herself. She was constantly falling asleep and wasn’t really moving at all.
If you know Oli, this is completely out of character. She is always going.

After we had been there a little while Cat asked if we could bring the kids in. Just so they could see that she was okay.

Unfortunately as soon as they got there a team came in to start her IV. My poor Kekoa was so flustered that when Cat escorted him back out of the room he grabbed my purse and tried to walk off with it.

After that, they didn’t come back in.

I can’t even begin to imagine what he must have been going through. I know what I was going through and it was awful. And I knew what was going on! He only knows that one of the times his sister took an ambulance ride, she almost didn’t make it back home.

Oli stayed at the hospital for about 9 hours. They ran a bunch of tests and then did an EEG.

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By the time they did it she was mostly back to herself. She was worn out and acting sick, she had been running a fever too, but she was aware of what was going on and awake. Once the EEG came back normal at 11 pm they said that, if we were comfortable, we could take her home.

We opted to go home.

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Oli was more than happy to be sprung from the hospital.

The verdict was seizure activity brought on by… we don’t know. A little virus maybe.

Seth had taken the kids to another friends house in the afternoon and then my mom went and picked them up so they could stay with her for the night.

Shaka stayed with Cat and his girlfriend Dubi.

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Yeah. He didn’t miss us at all. He is in love.

This morning my mom said that Kekoa was very tearful at her house.

We finally got him to talk about it when he came home.

“It makes me really sad mom.” He admits in a quiet voice.

He also said that he was really scared for Oli. Really scared.

Me too buddy. Me too.

It’s important that I never ever minimize his feelings.

I need to never compare, judge, or make him feel like he has to feel any other way, than the way he does.

As important as it is to me to have my friends and family validate how I feel…it is more important to me

that I validate my son’s.

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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.

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.

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.

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.

Heartache written on a piece of paper

1 May

Before I move on with my story, I have to write about Oli’s mandatory 3 year evaluation for school. They evaluate her to determine her progress and also to determine whether or not she still meets the eligibility qualifications for services. She’ll be 6 years old on May 10th.

O&M was the first evaluation scheduled to be completed. O&M stands for orientation and mobility and focuses on body awareness, spacial concepts, walking and navigating around the environment as a blind or visually impaired child. As a totally blind kiddo, Oli always qualifies for O&M. Her O&M instructor is absolutely fabulous. She is a wonderful woman and teacher and I really like and respect her. She has been with Oli since we moved to Texas when she only was 2 ½ years old.

I have to tell you that, before I get into the results of her evaluation. Before I tell you how little progress Oli seems to have made in the last 3 years. This is NOT, in any way, a reflection on her teacher.

This is just Oli. This has always been Oli.

You see, progress is slow with her. She does do new things and accomplishes goals every once in a while. It just doesn’t happen very quickly or very often.

It’s hard.

It’s so hard to watch your child work so hard and struggle. To try and to fail. To improve and do something new, only to have it slip away. Some of her new skills have diminished and then disappeared completely. At the beginning of the school year Oli was standing up from the middle of the floor all by herself. She would just stand up and every once in a while she would start walking. Just like any other kid. Then it stopped. It stopped completely and she hasn’t done it at all in 8 months.

Is that skill gone forever? Did she have a seizure that wiped it away? Did she forget how to do it? Did something scare her? Why does she lose these skills so easily?

I don’t know.

That is my universal answer when teachers and therapists ask me “Why doesn’t she do that anymore?”

I don’t know. I don’t have any idea.

I wish I did. I wish I could take a peek inside her brain and figure it out for her. I wish I could just look at her and say “Remember when you did that? Or said that? Can you do it again please?” I wish I had an answer. Something better than, “I don’t know?”

That’s not how it works though. What is the problem for her? Why does she struggle through learning simple things? Why can’t she be potty trained or pull up her pants? Why can’t she remember where her nose is consistently or say hi? Why doesn’t she tell me that she wants eggs for breakfast or tell me she wants to play with the bells? She used to do all of these things.

Why can’t she tell me that she loves me?

So many questions and so very few answers.

Is it her autism, her blindness, her developmental delay, her intellectual disability? What is it?

No one can tell me because they all overlap.

No one has any answers, but everyone asks me. Because I’m her mom. I should know. At least, I feel like I should know.

I’ve never known the most profound sense of helplessness since meeting my baby girl. I’ve never felt so out of control on all things that feel like they need to be controlled.

I’m her mom. I should know what’s going on with her.

But, I don’t. I never have.

I’ve read a few other blog posts written by moms of kids with disabilities and they talk about looking at other moms and being jealous of them and their children. I understand that. I try not to compare my daughter to anybody else’s children, mainly because I did that WAY too much in the beginning, but sometimes…I still do. Not in the uuuggghhh…I hate you because you don’t know how good you’ve got it…way. But…uuuggghhh…Look how easy it is for your kids. I just wish life wasn’t so hard for her…way. I’m jealous of other special needs kids who learn things easier than her or kids that don’t have multiple disabilities. But then I HATE myself for thinking that way because it’s ridiculous. I don’t know that life is any easier for them or any harder for my daughter. There are a lot of kids out there in way more difficult situations. These are things that just should not be compared.

I think sometimes I just want her to get better.

I look at my other two kids and it just all comes so naturally for them. They just learn. No big deal. For Oli everything is such a bigger deal. She can’t see so right there, it’s a whole new ball game trying to teach her. And then her body just doesn’t work all that well. It seems like she wants it to do things and it just doesn’t. She has low tone and poor balance. Her arms are weak. She needs a very long time mentally and in terms of motor planning just to figure out where she’s going and how she’s supposed to get there.

It just isn’t easy.

Reading these evaluations…isn’t easy.

It’s always hard to read the same evaluation year after year.

It’s hard to read “She used to do this…She used to say this…but now she doesn’t.”

It’s hard because I know she’s in there. I know what she’s capable of. I just don’t know why it comes and goes. I don’t know how to make it any better for her.

She does therapy and therapy and more therapy. She gets PT, OT, speech, vision, and O&M at school. She gets PT, OT, speech, and hippotherapy at home. I just always feel like maybe there’s more. Maybe there is that one therapy out there that we’re not doing and that will be the key that unlocks the door.

In my brain I know that it probably doesn’t exist. In my brain I know that we are doing everything.

In my heart? I want to do more.

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