About: Maria Spencer
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Courage Under Fire
March 28, 2008 | Leave a Comment
An actor in the movie “Ladder 49” said, “Courage is not the absence of fear, but the realization that there is something more important than fear.” Obviously, he was referring to the courage firefighters have when risking their lives for others. When I heard this statement, it instantly resounded in my soul that the courage he was speaking of lives inside me, and in you…as special parents.
No matter how long you’ve been on your journey of special parenting, I’m sure someone has said to you, “I don’t know how you do it, I could never have the energy or courage to do what you do every day.” And I used to be one of those people, until my daughter came into my world.
I know I say it often but I strongly feel that we were chosen by God to parent our kids. He gave us the skills we were going to need as parents the day we were born…think about that! The thoughts overwhelm me sometimes…When all of a sudden, usually without warning, you have to go into a mode of yourself that you never knew existed, you can do nothing but have courage. You gather the strength from somewhere deep inside that was waiting, lying dormant, for your child to enter your life. He planned it that way.
Then, this little precious person becomes the thing that precedes everything in your life up until that moment, which is so much more important than any kind of fear that would like to take over.
What can be more important than your child? Whether you planned this life to be part of your family naturally, or traveled to another city or country to make him your own, the love you have for this child is without measure. Fear is not an option.
Fear creates chaos and distance. It breeds worry and uncertainty. We don’t have time for such thoughts or actions. We usually have too many appointments, meetings, and unexpected challenges that come up to allow any of those words into our vocabulary.
Think about how natural these things come to you– You have become better at multi-tasking that you ever thought possible. You have become your very own crisis intervention specialist. You took (or maybe still are taking) a crash course on your child’s diagnosis or disability; you quickly became the therapist, physician, specialist, and parent….all at the same time. We don’t have time to live by fear. Fear is the opposite of faith.
I choose to live by faith. Faith breeds answers, peace and hope. Hope for our children’s future, and ours. Faith creates the environment for healing, progress, and accomplishments for our kids on a day-to-day basis.
Can you imagine what our world would be like if firefighters lived by fear? We have their courage– Courage to go where not many would choose to go, with faith, hope, and expectancy—for the life of another. So, my prayer is that you realize how so very valuable your journey as a special parent has become. So valuable, that your life parallels that of a firefighter. Regardless of limitation, different abilities, or challenges, our children have taught us how to fight the fires of their disability, and face the heat with faith and courage.
One Moment
March 28, 2008 | Leave a Comment
I recently had the pleasure of meeting a very seasoned “special couple” They have a daughter in her thirties who is profoundly deaf. They poured their life and heart out to my husband and I in a very short period of time….when you’ve come as far as they have as parents, a few minutes is all you need…
They spoke of how they realized she was deaf, and how many times they had suspicions and were told they were over-anxious first time parents. They then explained how they moved across the country to find the services and schools they knew their daughter needed—No jobs in sight, and they moved from Ohio to California without even questioning themselves. After many years and moves, the Mother stated so simply that when their daughter was 6 years old, she saw a person that had a physical disability, and in her innocent, newly found voice, she said to her mother, “I am so glad I don’t have a disability.” All their hard work, sweat, and tears came down to that one moment. They had placed her in a school setting with professionals that taught her all about the hearing world and how to function in it. Every moment of doubt or questioning themselves as special parents became a quick memory in that one single moment.
As the Mom was speaking, I instantly began to weep. I wept because isn’t that what all of us want? We want all these appointments, research, running on empty wondering if it will all truly be worth it one day—to come down to one moment just like that. Maybe some of our kids wouldn’t be able to communicate that to us as beautifully as their daughter did, but even if our moment came down to some form of confirmation from our child or someone that has to do with our child’s functioning that we did OK. Because when it comes down to it, the approval of our kids is one of the main goals—at least it is for me.
I look forward to the day when my Olivia is ready to tell me thank you for all of the services I made sure she had, or that she doesn’t feel inside any different than anyone else she comes in contact with—because of the way we treated her, and never made her feel any different.
I also wept at the thought of that feeling as a parent. When we became parents, whether we knew our child had different abilities right away or not, parenting in general is a challenge. We all want to do the right thing for all of our kids-we want to help guide them in their decisions; we want what’s best for them. And the ultimate would be to get some kind of confirmation of that—verbal or otherwise.
The tears I shed while driving away from meeting them were much different than the tears I have shed on my special parenting journey thus far. They were filled with hope for Olivia’s future, and for our family as a whole. This beautiful couple that shared their special story with us, filled us with expectation and hope for the future—not just for Olivia’s future, but also for ours as parents. They taught us that we will survive—they’re proof.
How many of us had to travel across the country to get services for our child? We may have had our share of obstacles along the way, trying to find the right professionals to be on our child’s team, but I’m pretty certain not many of us had to do what they did.
I feel they are an inspiration to special parents everywhere. I’m sure they don’t feel that way… through their humbling, genuine words; I realized that they did what any one of us would have done. They didn’t have a choice. When you become a special parent, you realize that your needs and wants are no longer an issue; all that matters is your child. They are the epitome of parenthood.
My hope for you and your family this month is that you will remember the simple words of this precious little girl at such a young age—and look forward to your moment just like that. And instead of filling your days with worry and thoughts of doubt in this journey with your child, focus on the hope and expectancy of your moment, and know that you’re doing a good job.
Enjoy The Journey
March 28, 2008 | Leave a Comment
Many parents I know say to my husband and I, “enjoy them while they’re little, they grow up so fast.” I agree already, from experience with both of my kids, and they’re only 8 and 5 years old. They are growing before my eyes, and in the hustle and bustle of everyday life, it is definitely a challenge to just sit back and enjoy them completely.
It is even more challenging to relax and be in the moment when you have a child with special needs. When we get in a pattern of crisis management, or planning for multiple procedures our kids need, we are in caregiver mode, rather than parent mode. Regardless of how often your child’s condition requires you to be in this mode, my prayer is that my words will guide even the smallest steps toward enjoying your special child more.
So how do we come to a place where we consciously make an effort to focus on our child’s unique blessings they give to us daily, rather than worrying about the next crisis?
I feel we must get in the habit of focusing on all the wonderful things our kids are capable of doing, rather than their limitations. When we have to be “on-call” so to speak for the next obstacle, it is so easy to get in the mode of only seeing the disability. Personally, I try to focus on my Olivia’s smile, her words, and her beautiful, string-willed spirit that shines so brightly. I’ve found that the more I see what she can do, the things she can’t do become so very small.
A friend of mine that is a parent coach always says, “What you focus on grows.” Think about that and how it relates to your child, and how much brighter your days would be if the center of your focus is on the positive things he or she shows to you every day. Even the smallest accomplishment can grow if you allow it to.
The small victories that our children have—a new word, a new movement, the ability to tolerate a new situation, etc…those are the things that should get us from day to day. These small goals our kids meet may not mean anything to the outside world, but in our world, in our families, they mean so very much.
My challenge for you this month is to make a conscious effort to focus on one positive thing your child is capable of doing—not comparing him or her to typical peers—find one thing to hone in on, and watch how it grows. Just like a seed placed in soil, if it is not nurtured and taken care of, it will not grow.
The same is true of our kid’s beautiful seeds that are right in front of us every day. We must water the seeds with faith-filled words of encouragement and hope for their future, and feed their rich soil by basking in their accomplishments, no matter how big or small they may be. Their self-confidence and self-pride is counting on us to consistently be the sunlight in their lives, and not bring pity into the way we react to them, to ensure they continue to grow and blossom. By allowing ourselves to see the magnificent flowers they are becoming, we can relax and enjoy them each step of this special journey we are walking together.
Celebrating Seasons
October 25, 2007 | Leave a Comment
Is there a certain time of year that is particularly challenging for you as it relates to your special child? Maybe it is a specific date or season that brings on anxiety of when you first entered the world of parenting a child with special needs. Maybe it is directly related to the beginning of your journey, and it holds thoughts of its own. These memories have their own set of particular emotions that are associated only with this time… Do you have such a time or season? Does your heart start to race at just the thoughts?
Many things can accelerate the feelings that were associated with our season of being a new special parent. For some of us, when we hear a certain professional’s voice, or our child has an appointment at a place where these feelings were birthed, the memory of that season of our lives becomes ever so clear. For still some, the sight of a particular medicine, treatment, or assistive device that your child needed at that time makes these emotions surface. For others, it may be the memory of when and how we first came to accept our child’s challenges—these realizations have become part of us, and have an actual “anniversary” in our minds.
When fall comes, my emotions race back to the fall when my daughter’s life was forever changed. This is our fifth fall since then, and I vowed that this year would be full of hope and happiness. My challenge for all of us this month (myself included!) is to find something positive to replace any negative thoughts that encompass whatever you relate to as that season of your special parenting life.
Whether this time was a very short while ago, or many years ago, we all share the same feeling about it…The more special parents I encounter, the more I realize we all have a space in our hearts that were forever changed when we learned something about our child would be different and unique. At first, that space is filled with sadness, confusion and anger. We do anything we can to fill it up with our own strength.
Then as time goes by, this cavity begins to fill up with new tissue that you never thought would be able to dwell within you. You used to see others that had special children and wonder how they did it. Then one day, you became one of them. You learned how to instantly compromise everything in your life up until that moment, and live to give your child hope and stamina to endure whatever was up ahead in their journey…
I feel that as this space continues to fill up with positive, encouraging things that our kids are capable of doing, the more our season that was once very difficult to get through, can become a very happy time of year.
Rather than mourning during this time, we should celebrate. If we consciously embrace all of the things that were present then, and think of how far we’ve come as parents we can’t do anything but celebrate! Be proud of the person you’ve become since your special season came to be part of your life. Think of all the challenges you have faced, and all of the strength you’ve had to endure each one of them with confidence and ever loving commitment to your child. You’ve done things since then that you probably never dream you could do.
So this month, I will bask in the wonderful thoughts of each and every precious moment with my Olivia. Just as I will enjoy the changing colors of the leaves, I will rejoice at the thought of all the wonderful changes that have happened within me and within our entire family since she came into our world.
Super Mom
August 27, 2007 | Leave a Comment
This is for all of the special moms that think you can do it all….take it from me—you can’t. Periodically I get into the mode that I can do everything for everybody—and still take care of myself in the meantime….and every time I try this “super mom” mode; I get burnt out. Last month, I had one of those months…I thought I could go into my mode and still have the energy for myself. Read more
Finding Your Strength
April 6, 2007 | Leave a Comment
When you think of the word endurance what comes to your mind? Images of athletes trying to hold on to their strength for their teammates instantly come to mind for me. By definition, endurance means, “the act of bearing pain or distress, continuance; patience; stamina.”
Now think about all of the many things you as a special parent have learned to endure. Whether your child is a few months old or approaching adulthood, I’m sure you know a thing or two about endurance.We have been so very accustomed to being in a state of constant alert—we don’t dare relax and get comfortable, because when we do, some new crisis or setback may occur. So as we go through life, doing all the things we need to do for our child, the rest of our family, our work, and of course, our peace of mind; where does our strength come from? In order to endure we must first have strength and stamina.
Choose Hope
January 12, 2007 | Leave a Comment
Christopher Reeve said, “Once we choose hope, anything is possible.” We special parents have good days and bad days with our children, but our best days are those filled with hope. Hope for the here and now along with hope for our child’s future. I feel we must understand that hope is a choice—people that don’t ever have to think about reaching inside themselves to grasp some hope to get through a day probably don’t realize it is a choice. The alternative would be focusing on the negative, the “what ifs”, the “cant’s”, or the “wont’s”…as a parent, those words cannot be in our vocabulary in order for us to pass on the light of hope that our children so desperately need, so they can dig deep within themselves and call upon it whenever they may need it. It would be making the conscious choice to dwell on all the things our kids can’t do, instead of the things they can do. If that is what we chose, what kind of message would we be sending to our children? With the multiple physician and/or therapy appointments we take our kids to, all too often the focus is on what our children are not capable of, and a professional’s opinion is usually all we have to get us through any particular day. While many, many professionals give us hope, there are many days we have to have our own sense of hope when those appointments don’t go the way we had expected. That “piece” of hope is based on what we know our children are capable of (after all, no one knows our kids better than we do…), not what the expert we see on any particular day has to say about them. If you are surrounded by family and friends that are hopeful, it is much easier to “find” our hope when we need it… Our kids will always look to us for an example, for empowerment, and encouragement…if our light of hope would dim for any reason, we may be unwillingly deterring their progress that day—or we may be altering their self esteem and not even realize it. We must lead by example and look towards them with positive expectancy. Our kids have dreams and wishes just like all kids; obviously, we have to be realistic as to not frustrate them, but if we expect great things for them, they will always be sure of themselves and know that they can and will do anything they want to….and if their body or mind limits them in any way, they will always have our loving support and encouragement that stems from that constant light of hope inside us. That hope can present itself as many different things to different people at any given moment—it may appear to you when you see your child do the smallest thing that you may have been working on for months, or when they have met goals above and beyond your expectations—that unbelievably wonderful feeling that comes over you that you just can’t quite explain to someone in words (I know the feeling very well!)…That is the feeling of expectancy beyond belief. That is what our children need more than anything at times. That is the hope I’m challenging you to find, or if you have already found it—embrace it with all of the energy inside of you… I know first hand that the smallest light of hope can get us through even the darkest day…have you made your choice? Choose hope and anything will be possible…
Encouragement for All Parents
December 4, 2006 | Leave a Comment
Recently, my family and I were in a very small group social situation with a family that had a typically developing child, and a family that had a son with a disability. Within minutes of our encounter with these families, I noticed the family with the typical child had not even acknowledged the other family—they were sitting by themselves, talking only to each other…I immediately realized that people are afraid of us—if our kids look or act different in any way, people don’t know how to react or what to say. So to the typical parents reading this, I hope my words can inspire and encourage you when you interact with special parents. And to the special parents, I hope that my words will appropriately put life to many of your thoughts and feelings. Don’t be afraid of us….our kids may or may not look differently from yours, they may act differently from yours, they may do or say things in a different way than your kids do, they may have sensitivities to everyday things that don’t bother your kids— but we parents still have hopes and dreams for our kids the way you do…please don’t shun away from us in public, just because you don’t know what to say or think. We are parents, just like you. Yes, we’re special. We’ve had to learn medical terms and facts that most parents don’t have to. We may have had more trips to the ER and may have had more hospital stays with our kids than you have. We may be familiar with may types of professionals that you may never have to encounter for your children. We don’t have as wide a range of choices in extra/after school activities that our kids can participate in—we just have had the privilege of learning all about the extra therapies after school that can benefit our kids. We take our children to multiple appointments and have different kinds of conferences with our kids’ teachers. Just because you haven’t had to go through some of the things with your children that we have, doesn’t mean we don’t want to talk to you about your hopes and dreams for your children…we just might have a little different perspective on “typical” hopes than you do, and our intent is to encourage you to see a little piece of the world the way our special child has taught us to see it. When you see us in public, do your best to make us feel included. We parents want to be accepted into our peer group, just like our kids. Just like you, we love to brag about our kids! We welcome any opportunity to tell you all of his or her accomplishments, no matter how big or small; even if they don’t compare to the things that your child has conquered. If you don’t know what to say, or concerned about the way your words will come out, I want you to try to put yourself in our shoes for that moment; focusing on positive, hope-filled words for our kids, and relax…we don’t bite! Most importantly, don’t fill your face or words with pity for us. Don’t feel sorry for us, we were chosen to parent our kids—we consider it a privilege. After spending some time with our child, you will see why we feel that way. We know that if you were faced with the challenges we have with your own son or daughter, you would find the strength to do what we do every day. So approach us and speak to us even when you’re not sure what to say or how we will react…don’t be quick to judge our child just because he’s different from yours. We just encourage you to open up your mind and heart to our family—we promise you’ll be pleasantly surprised.
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What About Dads?
October 31, 2006 | Leave a Comment
What About Dads? So much of what we read and talk about has to do with moms of children with special needs. What about dads? They have feelings, too. With a little insight from my husband, Michael, we hope this will be the first of many articles that may recognize and help all the “special” dads out there. We all know the stages of grief we go through when the dream of f typically developing child in our life is gone. Men are very emotional beings in their own way, and their makeup allows them to be in the anger mode and stay there much longer than women. Traditionally dads are used to being the caretakers and breadwinners in the family and they are accustomed to having some sort of control over what happens to their family. As we all know, when a doctor tells us our child has some kind of a disability, we have no control. They are the “fixers” and when they first realize that they can’t fix what is happening to their child, and to their entire family, it can be devastating. In usual circumstances, they can usually step up to the plate and take care of whatever needs fixed, but raising a child with a disability changes the playing field a bit. When they first learn of their child’s disability, the fixer in them just does what they have to do to repair as much of the situation as possible. They are always the pillar of strength for the whole family’s sake; while on the inside they are crying and screaming—just like mom is usually doing on the outside. One of the most productive ways my husband and I take advantage of the fact that he is the “repair man,” while I am the emotional one, is that we feed off one another. Jim Brickman’s song says it very simply, “You are strong when I am weak, you are the words when I can’t speak…” Almost immediately, when one of us is having a bad day, the other musters enough strength for both of us to get through whatever may be happening that day (testing, blood work, doctor’s appointments, therapy, etc.). To dads everywhere, the small “repairs” help them feel they are gaining some kind of control over their family situation. The better we moms and dads are at this, the more good days we will have. Another way dads can feel they are gaining some control is to continue to be the “fun” parent. They can fix things by finding ways to play with all of their children, regardless of disability. Maybe they just need to fine-tune the activities to meet the needs of all their kids—something that comes naturally to dads! Dads have a lot to offer to their special children and do so much to support and strengthen their whole family. Give recognition to them today by thanking them for being the pillar of strength and for fixing things the best way they know how.
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A Lesson For All Parents
September 6, 2006 | Leave a Comment
Calling all parents…what or how should you teach your child about other kids that may be different from them? In my experiences with my daughter, and from experiences with the general public, I can only say this—lead by example. Teaching differences in general can be challenging for parents. But think about the first time your child asked you a question about a person that looked, acted or talked different from them—what did you say? If you haven’t crossed that road yet, or even if you flubbed it the first time, allow me to be your “mentor” on this subject for the next few minutes as you open your mind and heart.
The definition of empathy is ‘the action of understanding, being aware, being sensitive to, and vicariously experiencing the feelings, thoughts and experiences of another…and/or having the capacity for this.’ I do not claim to be an expert in the subject; I can only tell you about how empathy has impacted my family and me directly.
I think that some of us have a larger capacity than others for empathy. Maybe it is based on our upbringing, genetics, life experiences, or a combination of all of them. But in attempting to teach your children how to respond to children that may walk, talk or act differently than they do, I think it is vital that you dig deep into that capacity for empathy and relay it to them. This, in turn, will increase their capacity for empathy.
Consider this: you are in a grocery store and see a mom with a child in her cart that obviously has some sort of delay or disability and your child is staring at him. What do you do? What do you say? Here is where your degree of empathy comes in. Instead of staring with your child or trying to hide your child out of embarrassment, set an example by acting and talking to the child as if there were do differences. Don’t speak with pity or sorrow to the child or his parent; instead speak with admiration and honesty. That mom has been through some very rough days and wants so desperately for her child to be accepted just as much as yours. Don’t look at the parent with sadness or heartache, instead look at her with dignity and respect and know that she has gone beyond the realm of courage and bravery in parenting this child.
As we all know, if you model this behavior to your children, you are leading by example, so next time your child may not shun or stare at a child who is different. Hopefully, after the encounter, your child will ask some questions. That will be your opportunity to express the importance of not making people feel different, even when they are. Encourage your child to approach and befriend a child who is different from them. They need acceptance from peers and friendships just like any other kid. Don’t be intimidated by the unknown, just open your mind and put yourself in the other parent’s shoes. Increase your capacity to empathize with them and you’ll be teaching your child one of the most valuable lessons—kids that appear to be different in some way don’t deserve to be treated differently. Things aren’t necessarily the way they seem, so take the time to listen and understand the child before you judge him.
I feel if we can all do this in small ways with our typically developing children, they will have a large inner capacity for empathy and will be able to express it to their peers—and someday, to their own children.