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

Blessings

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may become mature and complete, not lacking anything. James 1:2-4

When it comes to being chosen to be the parent of a child with special needs, this passage is not always easy to take in. I have been on this road for almost nine years now, and I still have trouble believing—truly believing it…depending on which path I find myself on at any given moment.

But recently I heard Laura Story’s latest song, “Blessings.”  The first time I heard it, I didn’t really hear all the words because I was weeping. Weeping at the fact that so many emotions that I have experienced at many twists and turns on this road she managed to put all together in one song. Words that can only come from experience.

Laura Story is not a “special” parent, but she has shared on many radio stations that this song was birthed through the trials she and her husband faced when he was diagnosed with a brain tumor—and in the midst of praying for his healing.

This is the chorus:

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
What if a thousand sleepless nights
Are what it takes to know You're near?

What if trials of this life
Are Your mercies in disguise?

Trials=mercies.

Think about that for a minute.

Challenging to let that thought take root.

But what if?

What if they are?

What if it’s all part of His master plan of choosing us to be special parents?

So if I believe that He chose me for this amazing task, and if I believe that it is all in His purpose for my life, I have no choice—even on the hardest days—to consider it all joy—and receive His blessings.

Even when I can’t see them.

Even when I can’t feel them.

I resolve to turn it all over to Him, because without Him in my life, I wouldn’t have been able to be the mother that I am.

So I am grateful and so very proud to be a parent of a child with special needs, for through her challenges, I found the Lord.

And I choose to believe the “what ifs” in this song.

Choose to believe with me today.

~Maria

To hear Laura Story’s “Blessings” click here:

http://youtu.be/1CSVqHcdhXQ

Dear Alyssa

My beautiful niece Alyssa recently graduated from George Washington University with a BS in Public Health.

She is an inspiration to all of us, and because many family members comment on the undeniable resemblance to Alyssa and my daughter Olivia. I must tell you that not only do they look alike, but they both share the same independent spirit and I hope and pray that Olivia will one day follow in her footsteps. Alyssa has also inspired me as a special Mom, as she reminded me last week of a fellow student of hers that is a person with cerebral palsy that also graduated last week.

This post is in honor of Alyssa, and all that she represents…

Dear Alyssa,

When I think of you, I think of the word “pioneer”—and all that it means….one definition of pioneer is “the first one in any effort.”

Thank you for being a pioneer in our family. Thank you for setting the bar high for all of your little cousins and siblings to arise to. I am so grateful for the amazing pioneer spirit God has given you.

Your amazing work ethic, your brilliant mind, along with your beautiful heart that longs to serve those that have less than you makes you one of my heroes here on earth. Your passion and drive has come from your loving parents and family that surround you, and God gave you your independent drive and passion as He knit you in your mother’s womb.

For all that you are, I beam with pride. Not only do you have dreams, you are making them come true. And the thing about a true pioneer is that their dreams surpass their own needs and wants and desires---the dreams of a true pioneer have the needs, hopes, and dreams of others first….that is you.

The work that you have invested time and money in to benefit women and children in Rwanda is awesome…I am so thrilled that this week the women of that village will be able to put their arms around your neck and thank you personally.... I know that I know in my spirit, that you are an answer to their prayers that they have been praying for the past decade….they have been crying out to God for someone to help their children get medical care, and have a harvest for their children so they can have basic necessities that we all take for granted. The work that you and your fellow students through GlobeMed have done—are the answers to their desperate prayers.

Please take 5 minutes and watch this video of a song called “Pioneer” by Rick Pino. It sums up what you stand for:

http://youtu.be/LwZaz5AVoNY

I love you,

Aunt Maria (Re Ree)

To see the amazing work Alyssa and GlobeMed are doing in Rwanda click here:

Enable 50 Rwandan Mothers to Farm for Profit

For updates on their trip to Rwanda starting tomorrow, click here:

http://gwugrow2011.wordpress.com/about-2/ 

Visit www.GlobalGiving.org --a wonderful organization that Alyssa works for that enables anyone to give to any cause—including those that affect people with disabilities.

It Takes A Village

I’m sure you have heard the saying, “It takes a village to raise a child.”

When you are speaking of a child with a disability, that saying couldn’t be truer. I believe it is so important that our special families set an example to all those that encounter our kids to stress the importance of what true equality means.

We all have strengths and weaknesses—none of us are the same, that’s the way God designed it. Typically developing or non-typically developing—we all have the same desires of our heart—to be loved and accepted for who we are.

Our kids are no different.

They still have the same desires other kids do, they just may not act or look like other kids. They want to have friends, they want to play on a playground, and they eventually want jobs and families of their own. Just because their abilities don’t fit it to the world’s view of what  “normal” is, they want whatever their normal looks like.

Even though the Americans with Disabilities Act was passed in 1989, sadly, prejudices that surround people with disabilities still exist. We as a society may not hear of these prejudices as much as other things that make people judge, but when someone has to come in contact with a person with different abilities, I feel their true colors come out.

I would like to think that we’ve come farther than we have as a society, but we have not.

Can you imagine what our world would look like if we were all truly on the same playing field? Can you imagine if all labels that have been put on kids and adults suddenly disappeared?

So many misconceptions continue to exist regarding people with physical disabilities—ones that are visible to the eye…as well as those that can’t be seen as easily to outsiders.

I don’t expect to change society’s views regarding people with disabilities in one little article, but I do know that if we all did our part—in every social setting we find ourselves in, we can change our part of the world little by little for our kids sake.

Because I feel we were chosen to parent our kids, I firmly believe that in addition to being our child’s caregiver and advocate, it is our responsibility to educate those around us that our kids want to live in a world without judgment and labels.

In our neighborhoods, schools, in the community and in our workplaces—we have opportunities to instill the hope of equality in every conversation and encounter—along with those professionals that our children see daily—the therapists, physicians, aides, etc…Even though they work in a field of disability, it is easy for them to get into auto-pilot work mode and not see each child as an individual. All of those that are part of our child’s team need reminders that each child they come in contact with have their own set of unique abilities, desires, and dreams. The people that are in our children’s lives on a daily, weekly, or monthly basis have great influence on our kids, and on the community’s views of children with disabilities.

Whether they are professionals in the field of servicing kids with disabilities, or they are your next door neighbor, my prayer for you this month is that you will recognize the opportunity when it presents itself to educate and inform those around you in a way that will impact their view of disabilities in general.

People need to be aware of the following truths about our kids:

Even if they can’t speak-they want to be heard.

Even if they can’t see-they have vision for their future.

Even if they can’t walk—they deserve the right to run this race called life.

Spread the joy and simple truths about our kids today…and one by one, we can alter our child’s “village”—forever.

~Maria

Special Decisions

All parents have to make a variety of decisions every day. They want to have the right answers to questions like: “ Should we let our son play football-it is too physical, too rough?” “Should we look into a private school that would meet our daughter’s academic or creative needs better?” “Should we allow our son to quit karate when we’re trying to teach him to follow through with a commitment?” “Should we allow our son or daughter to go swimming at a friend’s house?” “Should we send our three year old to pre-school or wait another year?” Whether they seem like big or small decisions, they all are important to you and your child.

Decision making in special parenting is a world of its own. Every time we have to make a decision, we have to revisit their condition, developmental level, their progress in one or more areas, etc… This process can sometimes be very exhausting. We have typical decisions with a twist-Just to name a few.... When choosing the right school placement, it is stressful because all of the issues he or she may be having must be addressed and there may be many people on our child’s “team” that need to be involved. When deciding what kind of professionals need to be involved in your life to help your child reach his full potential, there are often times more than one decision to make, which can be challenging. Who do we trust? Who’s opinion should we listen to? We think- “This is my child. My baby.” Of course we want the best of everything for all of our children. We want to always make sure we are making the right decisions; ones that are going to be beneficial to our child in some way. Whether it’s one of the very first decisions we have to make that involves the care, education or programming for our special child, or we’ve been making choices that we’ve had to make over and over again, it is always challenging. (All of this sounding familiar????)

I don’t claim to be an expert, but over the past eight years in my daughter’s journey, I have definitely learned a few things; and in my day to day contact in my position with many families that are facing different kinds of disabilities, my prayer is at least one of the following things will help guide you… Open up your heart and mind to listen to professionals and choose your team players wisely. (These two go together, so we must talk about them at the same time.) First and foremost, we all have to be open to the fact that at some point or another in our child’s life, we need the expertise of professionals to help us make some decisions for our child. I am the first to admit that sometimes as a Mom, I want to react quickly with my emotions flailing when attempting to make an important decision for my daughter. I have learned that I have to take a few steps back, re-group my feelings, and trust the professionals to help guide me. Over the past eight years, I have put my trust in a few key players and learned to step aside when I need to. Be patient, as with any team, assembling all the right players with all the skills you need may take time. The ones that become part of your team are very easy to recognize. They are the ones that when you leave their presence you say to yourself, “that person cares, they know exactly what stage of the game we are at, and they have our child’s best interest at heart-always.”

Trust your instincts. I believe that our instincts as special parents begin to form moments after we learn our child has some kind of need that other children don’t have. The more positive outcomes you have had when you’ve relied on that instinct, the more you will learn to trust it. Even though we all have many experts in our lives…physicians, therapists, teachers, etc… no one knows our children like we do.

Trust yourself. I firmly believe with all my heart that God chose us to parent our kids. He entrusted us with their care and their future. In the beginning of my journey with my daughter, when I was scared and looking for threads of hope, all I could do is pray--when you have nothing else to hold on to, all that’s left is prayer.

I don’t know what specific disability is part of your family’s everyday life, and I don’t know how long you’ve been a special parent; but just as the feelings are all the same, so are the decision-making factors. Find your team players (sometimes they find you!), and trust yourself to follow through and find what’s best for your child and your family’s lifestyle. Be proud of your special-parenthood, remember, we are the chosen!

~Maria

Revive Your Heart

From the moment we found out our child would be differently-abled, our hearts changed forever. It takes some time to get used to this transformation-- At first, we do everything and anything we can to find services and supports that may help, and we don’t stop—what I call “survival mode.” Survival mode is our body’s way of adjusting to the way this new heart feels—the rhythm of the beats, and what makes it tick.
As time goes by and our child makes progress, we know that this new heart was meant to be inside of us, we may even admit we actually like the way it feels. It’s easy when things are going well—decisions that we have made turn out to actually be what they needed, some goals are met etc,….
But when things aren’t always going good, and we can’t see any progress of our efforts, it is easy to get discouraged.
So much of the day-to-day routines and concerns for our kids can weight us down—sap us of our energy and strength, and eventually our hope.
Facing the challenges with our kids on a regular basis can be very overwhelming and can deter even the most optimistic and positive parent on any given day.
The weariness that goes along with this journey can make our once energized heart beat become sluggish.
Many days, our hearts need revived.

What do you do when your heart feels like it can’t go another step on this journey? Who do you turn to when you need a special parent lift, to put the spring back into your step to endure the bumps along this road?
Sometimes the smallest thing can help us get through an hour---and we all know that some weeks or months are definitely hour by hour--- even minute by minute.
I heard a special mom say recently that just by hearing an inspirational song revived her strength to get through that day. Another spoke of a night when family came to give her a night of uninterrupted sleep was all she needed to get back on track.

Depending on the status of your child at any given moment, these lulls in the state of our emotions can take over even the best day.
In my experience, most of the time, a third party that is supportive of my journey helps soothe my heart when it is feeling calloused. I am blessed to have many understanding, good friends that “get it” and an awesome, loving family that sees me through no matter what…

I would be amiss if I didn’t mention the strength that comes from my heavenly Father and the promises of His Word. His love and strength renewed my heart when I was a brand new special mom, and I don’t know where I would be if He hadn’t intervened and given me hope through my first few years on this journey….and He continues to remind me that He chose me for this task.

What about you?
Have you found other special parents that reassure you that you are not alone? Do you have some true friends that realize the parenting role you have is a little different from theirs, and support you?
If you don’t, my prayer for you this month is that you will seek out the opportunities in the community that are available—or get online and search for others that have children with some of the same issues that your child faces. Even if their child has a completely different diagnosis than yours, you must know that the feelings we face are all the same. We all share the same fears as well as hopes for our kids—so don’t be afraid to seek out other special parents—we all need each other. The professionals that your child sees on a regular basis may be the key to linking you to local families that are in need of support, too. I know first-hand that when we are feeling discouraged and don’t want to take another step forward, that is when you need to reach out to others the most.

Let the supportive people in your life to help you. A good friend that gets your world would be elated if you asked them for their help—and sometimes all we need is an understanding, listening ear.

Allow yourself to be renewed—don’t let your heart become so discouraged that you won’t let anyone in. We need each other—our kids depend on our strength and courage so they can continue to press on and fight—when we revive our hearts, our kids benefit the most.
Revive your heart, renew your spirit—your child is waiting.

~Maria