What's Your Story?

It meant the world to me that my daughter’s principal saw the importance of typically developing children, and many teachers, hearing their inspiring message of courage and strength in the face of their challenges. They both lead productive, full lives in spite of their disabilities.

One of the men, Chris, told the tragic story of how, at the age of four, he suffered an automobile accident that resulted in the loss of his mother,  and caused him to never walk again. What intrigued me about his brief message was that he chose to focus on the fact that we all have a story—no matter how old we are or how many challenges we’ve had to face, we all have a story—and we need to respect each other’s stories.

I was in awe of how true this is. Chris went on to say to the kids is that you never know what life story the student that may sit next to you may be.  This rang true for me I recently had the privilege of hearing two men that use wheelchairs for mobility speak about overcoming—Chaz Kellem and Chris Mielo. The beauty of their speech was not that they were speaking to a crowd of families of children with special needs, nor to an audience of people with disabilities. The real beauty, to me, was the fact that the platform that they had to speak to was an audience of mostly, (with the exception of my Olivia and a few other special children) typically developing children & their teachers in her elementary school. 

and other special parents like my husband and I…

We never know what other parents’ stories are---maybe they have lost a child, maybe their adopted child became part of their family was chosen because of his or her’s life story or history. Or they may even have a child that even though the child is older, they recently found out about his or her’s disability.

 I say often that no matter what the delay or disability our children have is, we all share the same feelings. One thing we all have in common is that we “get” each other’s stories. Pieces of our hearts have a common beat.

What I’ve learned over time is that instead of my heart continuing to ache over my daughter’s story in her nine years of life—I have come to embrace the place where she is today, and have grown comfortable with the changes in my heart. What once was a cause of pain for my heart has now grown into pride for the things that she has overcome—even if her story may be very different from her peers.

Chris and Chaz are an awesome example of even though you may be differently-abled, you can strive to do anything you put your mind to. Chris spoke of how his ability to play wheelchair basketball led to a basketball scholarship for college. Chaz spoke about his amazing employment at the Pittsburgh Pirates organization that he loves. They chose to focus on their strengths all throughout their lives, instead of focusing on the things they aren’t able to do.

Each and every one of our special children have strengths—we need to make a conscious effort in the midst of the multiple doctor appointments, school meetings and therapy appointments—to encourage our kids to foster these strengths. We need to see to it that we create an environment that enables them to press forward with the things that they are capable of doing.

The more I learn of the extent of Olivia’s brain injury, the more amazed I am at her continual ability to rise above all of her challenges. We definitely know that having her in our lives is a privilege, and never a burden. Her determined spirit allows her story to shine.

My prayer this month is that you will allow your child to soar—in their own unique way—in whatever it is that they are interested in and/or what they are good at. We know they are not typically developing, but they all have potential. They all can have an overcomer story. We never know where our efforts may lead them in the future. Let’s strive to bring out those positive abilities inside of them that allow their spirit to shine so that all those around them will want to know their stories. 

Isn’t that what life is all about? We all have a story—we all are different. We all can have an overcomer story.

 

Our kids, like Chaz and Chris, can change the world, one person at a time.

One story at a time.

~Maria

 Olivia with Chaz and Chris after their presentation at Poland Union Elementary School

 Visit them on facebook at Unbreakable Drive

Believe

I heard Christian singer/songwriter Mark Schultz say recently about a particular song he wrote, “Next to the song title it states that it is written by me, but I didn’t write it the words-God did, I just happened to be in the room at the time.”

That’s exactly how I feel about almost every word I’ve written. I don’t have a background or education in journalism or writing, and prior to 6 years ago, I had never had the desire to write at all.

Until one day He gave me the idea. Almost instantly, I had the desire and confidence to start writing. Thanks to the experiences with my Olivia, I had words burning inside me that I felt other special parents needed to know.  

A “wow” moment like that can only come from God. He not only placed the desire in my heart, He gave me the words He knows people need to hear---and He continues to give them to me month after month, week after week….

Now I’m sure some of you are thinking, “God could never use me, I don’t have anything to offer…He would never speak to me like that.”

Has God been telling you to do something you don’t feel qualified to do?

What is it that you started to do that you know could have only come from His strength and His love, and His guidance? Have you had “ideas” come to you that make no sense to your natural mind?

If He gave you the calling, He will see you through.

He will give you what you need—strength, courage, endurance, peace.

He did it for Gideon.

He did it for me.

He will do it for you.

Trust Him.

Believe.

~Maria

Through Their Eyes

We all want the best for our children—we want to see them progress in the areas that they struggle in, sometimes even before they are developmentally ready for it. I’m sure you know the stress that we put on ourselves when we get in this mode. We worry about the future, we make expectations in our minds that may never come to pass, and we stress out about the unknown.

Recently, we have had some unexpected challenges with my daughter, and it has been a rough couple of months. The stress of the issues she is having has been tough on everyone—except her. While my husband and I have struggled over decisions that need to be made, and what professionals to seek guidance from…my daughter has continued to be her bright, cheerful self. In the midst of it all, a very wise woman advised me to try to begin to see the world through her eyes, instead of seeing it through mine. My prayer for all us this month is that we will start to do just that.

All of us have been exposed to a wide variety of professionals that have benefited our children—physicians, therapists, teachers, aides, etc… We are grateful for their amazing ability to apply their knowledge and experience with us.  They help our kids’ progress in ways that we as parents could never do alone. At the same time, I firmly believe that no one knows our kids like we do. The potential in each and every special boy or girl lies within them—we need to believe in that potential and never give up on them.

I am determined to truly believe in that potential and allow it to grow. Even though we can’t control the future progress or setbacks they may have, if we start to see their world the way they see it---our eyes may be opened to a whole new perspective. Through every hospital stay, homework assignment, and therapy session, let’s commit to focusing on how well they adjust and cope to each and every thing that comes their way.

When we think about all the obstacles that our kids face every day, as parents, our hearts break when their disability hinders them in some way. But what I’m beginning to realize is that they don’t see their limitations as a hindrance—they know it’s just part of who they are. Their disability is not who they are—it’s just part of who they are.

I’m sure we all can recall the many times when our child exceeded our expectations. If we choose to focus on these times, think about how many more positive, productive days we would have. I say it often, when we focus on what they can do rather that what they can’t do, everything changes…for the better.

For example, my daughter recently started Tae Kwon Do classes.  Because the muscles on the left side of her body are very tight and her balanced is compromised, I was initially fearful that she would become frustrated with her attempts to keep up with her peers.

Well, as usual, she has exceeded my expectations—she doesn’t miss a beat with the other kids, she may move differently than they do, but she attempts every movement, and is determined to learn. In addition to her perseverance, the instructors push her to her potential, while being caring and empathetic at the same time.  Since it has been a few months since she began, I am not as anxious about her ability to complete everything the way I expect her to. Instead, I have chosen to see how proud she is of herself, and how much fun she is having! I see the class through her eyes.

When you think about trying to see your child’s view of the world the way they see it—what comes to mind? What are the things you struggle with as a parent? Do you dread social situations? Are you continually apprehensive about schoolwork? Are you worried about the next surgery or hospitalization? Whatever it is for you, know that you are not alone in the way you anticipate your child’s future.

If we begin to see our day-to-day routines through our special child’s eyes—the days will no longer be filled with worries and fear--they will overflow with hope. 

God Bless you on your journey,
 ~Maria

I Have Been There

When you are raising a child with special needs, you see the world in a whole new way—because our kids have changed the make-up of our hearts, the way in which we respond to things around us has changed. Things that used to bother or frustrate us, seem very minor now, situations or crises that arise, are not as catastrophic as they used to be. We are changed people, thanks to our extraordinary children.

I believe that God chose us to be special parents for many reasons. But the one that stands out for me the most this month is the fact that he chose us to be an example for others—to let our light shine, regardless of the struggles we have been through with our child, and to appreciate each and every moment, encounter, and circumstance in our life.

After all, others are watching—from the very new special parent, to the typical parent that is eager to learn everything about parenthood. Those parents we encounter on a day-to-day basis—either at work, at our child’s school, or picking up our cup of coffee in the morning—they are all watching. I use every encounter with a parent to show them that they will be OK on this journey, because I have been there.

I have been there when the outcome of a hospital stay is uncertain, and indescribable fear has taken over my entire being.

I have been there when I had to trust professionals that are encouraging me that my child will make progress—even when I could see no results.

I have been there when transitioning to pre-school and kindergarten feels like someone has taken our world and turned it upside-down, and we have to say our goodbyes, and once again, trust.

I have been there when the hopes and dreams that I once had for my baby girl were forever altered.

And I have been there when I learned to enjoy dreaming new dreams for my extra-special little girl.

Because we special parents have had more experiences than most parents, we have learned to take nothing for granted. We appreciate each and every goal our child has met—no matter how small. Each sound, glance, step, or day of stable health is considered a victory to us. And as we grow into more seasoned parents, we automatically become more grateful human beings. You see, the gratefulness, thanks to our amazing children, almost subconsciously spills over into every area of our lives. All of a sudden (or maybe over time, depending on your circumstances), the trivial misfortunes that come with this life don’t seem to bother us as much as they used to. We become people with not only changed hearts on the inside, but on the outside, too.

We’ve learned to be happy to be alive each and every day—to see each and every beam of sunshine that falls on us. To stop and not only smell the flowers, but to enjoy how our kids react to them. To truly see all that God has given us in the world around us, in our families, in our workplace—through all of our encounters.

When we set this example for other parents, our lights shine the most. They can see clearly then, that our children are not a burden to our lives, but a blessing. And that blessing is not only spreading into our families, but to all that we come in contact with.  Each and every conversation is an opportunity to spread the joy and love that naturally flows down from gratitude, and can ultimately change the way others see the world, too. I am in awe of the people that are placed into my path each and every day that I can spread this blessing to, through my daughter.

Just imagine what our world would look like if all of the special parents would share their “I have been there” moments with others, and in turn, spread the blessing.

My prayer today is that you will be driven to do just that.

Trust me, the results will be amazing—I have been there. 

We have to remember, all that we go through...He has been there, too...

Mark Schultz says it perfectly in his song "I Have Been There" 
http://youtu.be/fX20vnf5hH4


~Maria

Don't Walk Alone

 How connected are you with other families that also have a child with special needs?

Have you sought out groups or play dates with other families like yours?

If you’re not sure that you would be receptive to being with other special families, my hope is that my words will give you a start in deciding if now is the right time for you to seek out other parents.

Know you are not alone.

The sooner you realize that, the better you will be.

At the start of any special parenting journey, we all feel alone. We have all kinds of thoughts and worries that are specific to the fact that we had not planned for this journey…

We think, “I must be the only parent in the world that had to take this detour.” The truth is, most of us did not plan on taking this trip, and we do all we can to gather the strength to endure each minute of it. I know it is a very bumpy and exhausting road in the beginning, but the more steps you take forward, the smoother it becomes--And any journey in life is so much smoother when you are surrounded by others that have walked the same path.

Some special families are able to jump right into asking around for other parents that they can talk to shortly after they learn their child is not typically developing, and other families like to wait until they are completely comfortable talking about this unanticipated journey.

Either way, when you are ready, you will know.

I say it often that no matter what the disability that has made its way into your life is called, the feelings surrounding accepting it are all the same. They mimic the feelings that people go through that are mourning any kind of loss—Denial, Anger, Bargaining, Depression and Acceptance.Even if you are not totally and completely in the acceptance stage, you can still reach out to other people for help. Many families I have met over the years have told me that the reason they did not seek out other parents was because they didn’t feel ready to talk about the disability to anyone—let alone a stranger. And once they connected with others, they always end up saying they wish they would have had done it sooner.

We have all been in all of these stages at one point or another. And often, we go back and forth in and out of stages---we must remember that we are all human, and all of our hearts were changed forever when we learned our child had a disability.

Know this—you don’t have to have it “all together” to connect with other special families—none of us have it all together one hundred percent of the time!

  

One of the most important reasons we need each other is so we can all know and realize that we are not, in fact, going crazy—there are other parents in the world that are also on this journey that can often feel like a roller coaster ride.

I encourage you to ask your child’s physicians, early intervention coordinators, teachers, therapists—anyone that is guiding your journey—for suggestions and information on how to get connected to other families that may  not necessarily be on the exact same path as you are, but that have had the privilege of walking on this road that we are all on.

I do consider this journey with my daughter a privilege—because had she not been diagnosed with a disability, I would not have found out what true faith in God is, and would not have found many, many true friends that walk beside me.

Special Sense

I often describe raising a child with special needs as a journey—one with many twists and turns. One definition of “journey” is:  “traveling from one place to another, usually taking a long time.” When you begin, you don’t really know how long your journey will take, or exactly what it will look like. But very early on, all of the special parents I know make the choice to endure it for their child no matter what lies ahead.

While it is almost impossible to anticipate a twist or turn, we have a special parent sense that only those have had the privilege of parenting a child that is differently-abled. This sense is almost indescribable—it’s just there when you need it.

It’s not something that you receive instantly; I really believe it is mastered when we go through “survival mode.” I say it often, but this mode is when you are doing everything and anything to get your child towards the next goal. You research, ask questions, get second opinions, and usually don’t sleep much. We don’t realize it at the time, but we are mastering this unique instinct that is specific to our child and his or her needs.

I spent many years in and out of this mode to know that you can’t stay there long—it drains you, so you have to take time to rest and ride it out.

My column more often than not focuses on making sure you rest and sit still on the side of the road once and awhile. We need to refuel and refocus….

But at the same time, I learned first hand recently that sometimes when we least expect it, a hairpin turn can come out of nowhere and thrust you back to your first days on the journey.  It takes you by surprise, but you are somehow able to move forward. The good news is, that because we were chosen for this amazing task, we can confidently take the turn. The special sense just shows up. You go into mode, you don’t miss a step.

Because of my daughter’s disability, her balance is compromised. She uses every morsel of energy to stay up while walking, even though on the outside, she appears to be just fine. She did not use her orthotics to walk very often this summer, and we were on our way to trying to wean her out of them…until our unexpected turn showed it’s face.

She was walking barefoot down a flight of stairs, and fell as she attempted to compensate through the last few steps. She’s not a stranger to falling, so we anticipated she would have a few bumps and bruises and she would be fine. But like most hairpin turns, it was not a “typical” fall.

She ended up in the emergency room with a concussion—and while we were there, this sense of being strong for her just resurfaced—I really didn’t have to think about it.

I didn’t realize it until the ordeal was over—but I’m not the only special Mom that has it—you have it too.

You see, you don’t know how to begin to try to explain this until it happens to you. Some of you may know exactly what I’m talking about, but there may be some of you that have not yet experienced this.

When you do, my prayer for you is that you will remember my words, and they will encourage you through whatever your individual turn may look like.

I am not in any way suggesting that you live your life “on-guard” waiting for your unexpected bend in the road to happen. Take it from someone who has tried it—doing so will exhaust you to a point of not being able to be your best when your child needs you. But I want to you to know that when it does happen, don’t question your ability to ride it out. Your special parent sense will resurface, and you have to trust it.

No matter how many days or months you’ve walked on your journey I’m sure you’ve had a chance to fill up on this instinct. Each time you support your child through a bump in the road, it automatically happens.

In the midst of an ordinary day, we must remember that God chose us to do the extraordinary when our child has a need—trust the special parent sense that is inside you.

It was there when I needed it—and it will be there for you, too.

~Maria

One Step at a Time

No matter where you are on your special parent journey...if you've just stumbled upon the beginning of the road, and are searching for signs everywhere or you've been on this path for quite sometime, and you are very familiar with your surroundings , I hope and pray you will relate to the words that are on my heart this  month..

When you are in the midst of "survival mode," (the time when you feel like this road is that of a marathon, and you must get to all services and physicians that may help your child asap--you are trying tirelessly to win this race--and all other things in your world have been pushed aside)...you don't see any of the scenery that goes along with the special parenting path. And for the time being, that's ok. It's a great place to be when you've accepted that your child is differently- abled in some way than other kids, and you just want to do anything and everything that may help him or her--right now.

As you take on each day in this mode, it is easy to become frustrated, though--you want to see results, and you have a certain expectation of what's to come. Even though you've probably never walked on this road before, you want certain things for your child.

You make decisions that feel good in your gut--and you go for them. And because of that, you want them to produce some sort of success, even the tiniest sign of hope, for your child's future.

My prayer this month is that if this is where you are--don't try to figure it all out. As I say often, I don't claim to know everything about special parenthood, I just give you words based on my experiences...but if the few paragraphs above describe you at this moment, trust me--just try to take it one step at a time.

With each service you decide on or decide not to have your child partake in, you are taking steps toward their future. Try not to have a picture in your mind of the way each twist and turn will look--you'll know that part of the road is over when you get there.

Yes, there will be many bumps and stop signs along the way, just travel with an open heart and mind, and let the Lord be your guide. He put that special parent gut instinct inside of you--trust it , and roll with it no matter what the result looks like.

He chose you for this amazing task, and He'll be with you each step of the way.

You're going to survive the journey--allow yourself to take it one step at a time.

~Maria