The Secret Life of a Special Needs Parent

The Secret Life of a Special Needs Parent

A revelation of grace, grief, joy, love, blessings, and challenges

We’re in this together.

There are certain facts that are true for every loving parent and child.

*  Every child is different, and their needs vary significantly throughout the constant changes of growth and development.
*  Every parent seeks to meet the needs of their child or children, no matter how challenging those needs may be.
*  Every loving parent tries to stay in tune with the heart of their child, to know and even anticipate their needs.
*  No matter what a parent experiences in caring for and loving a child, the love and the joy over-ride everything else.
*  The two most important goals of most parents are to help their child go through all of the developmental stages in their emotional, intellectual, spiritual, and physical growth and to help their child learn how to become an independent and contributing adult with the skills, knowledge, wisdom, character, and faith they will need to live a life of meaning and purpose.

For parents of children who have special needs, these basic facts and primary goals are the same. However, the methods of achieving these objectives can be vastly different, often with much different expectations and a highly individual timetable for development that is discovered only through continued effort and the constant need to adapt to the individual child’s own pace in learning and in reaching developmental milestones. For some children, a developmental timetable can be relatively predictable. However, many children with special needs seem to have their own internal pace. Developmental experts can make predictions. Teachers and therapists and parents can set goals, but the true timetable for learning and developmental progress cannot be set externally. It is revealed by time. Sometimes, the developmental milestones are met more quickly than anyone expected, and sometimes progress can seem to take place, only to be followed by regression. Sometimes, progress happens but takes a long time. Parents of special needs children come to know the unpredictability of progress all too well. Special needs parents also learn to re-evaluate the very concept of progress. If, for a special and wonderfully made child, the “norms” are not the norm, hope for progress in every area possible must still be kept alive.  For some, progress can mean the absence of regression.  Even if hopes from progress and positive change must be adapted somewhat for the individual situation, those sparks of hope are fanned by the deep love of parents for precious little hearts and souls.

I certainly cannot speak or write for every special needs parent or for every kind of situation. Special needs can be physical, emotional, mental, developmental, academic, sensory, social, behavioral, functional, or medical. (I am not a special needs professional, so I may be leaving something out.) The term “special needs” can also apply to any kind of combination of various types of needs. However, it’s not the needs that special needs parents want others to see. It’s the child. Certainly, an awareness of special needs can be crucial, but recognizing the child within is even moreso. It’s as though a parent of a special needs child has begun a journey with an uncertain destination, incomplete road maps, and a set of broken tools. The compass has no needle, so direction is unsure. The spyglass has a broken lens, so you can’t see what’s ahead. The GPS keeps chanting “Recalculating, recalculating…” inside your mind as you deal with an unfamiliar landscape. Your watch has stopped working, so there is no accurate timetable or way to measure progress made against whatever progress might be possible. Your cell phone has a low battery, so it’s difficult to communicate with your family and friends. They are still there for you, and they also love and know your child; but it’s hard for them to invest enough time to truly know and understand what you are experiencing along the way. Your pain comes through in spite of the dropped calls, but sometimes they don’t know what to do or say. The rest of your immediate family is travelling with you and your special needs child, and hopefully your spouse is with you in every way as you face the journey together.

Your other children each have their own journey, with their own issues and needs along the way. They need you to travel with them as well, so you are simultaneously experiencing very real life journeys that are vastly different, depending upon the needs and special needs of each of your children.  In addition to all of the common struggles of growing up, your other children also face unseen hurdles and even their own griefs as they love and try to protect their special needs sibling. There are a lot of things about having a special needs sibling that can be very difficult, but you try to teach your other children along the way that love and thankfulness are the keys to enjoying life moment by moment with their special needs sibling, while also grieving for them at times. So, as parents, you are not only dealing with your own feelings and griefs and questions and challenges (in relation to the challenges faced by your special needs child), but you are also dealing with helping your other children to understand, cope, grieve with hope, love without condition, and handle their own feelings regarding everything related to their special needs brother or sister.

For parents, it’s incredibly hard to balance the unknown aspects of the journey with your special needs child (and each of your family members’ own struggle with the family’s journey on that road) while also experiencing the milestones and life changes of growing up with your other children. These milestones and life changes have been revealed to the very core of your heart as something that cannot be taken for granted. On the one hand, they are incredibly sweet since you recognize what a miracle each of them is for the child as you witness the wonders of growth and change. On the other, you grieve inside for the fact that these same milestones and life changes are not all going to happen or are not going to happen in the same way for your special needs child. The balancing act becomes one of grieving while rejoicing, often without revealing your heart in the moment (so that the internal struggle does not diminish the joys of very real accomplishments and life changes for the child who is moving forward). When the waves of grief wash over you, you eventually learn to immediately focus your thoughts on all of the blessings of life with your special needs child and all of the victories, from the most minute to the biggest of the big, that have happened in the life of your special needs child and in your heart as you have loved and cared for him or her. Thankfulness is the only antidote to grieving that I know. It is the lifeline that will pull you out of the crashing waves of grief and into the presence of Christ.

One of the many blessings that is a part of life with the incredible gift of your special needs child is the fact that there is a sharpened and very keen level of awareness of the need to be more fully aware in all of life. If I am more aware of the pain and challenge and difficulty and loneliness in my life, I must also become more aware of the joys and blessings and victories and wonderful moments and graces within the tough moments. Here are some examples of the ways that this awareness of the need to become more aware  manifests itself in my life as a special needs parent.

> In my moments of the most acute need, when I am dealing with some aspect of now or of tomorrow, I can become so aware of the fact that the challenge is mine to face that I could miss the sweetness of possessing this need. Here is part of the fuller awareness that I need to find and to remember:
*  I have this need because of an infinitely incredible gift.
*  I have this need because of life and because of love.
*  I have this need because somehow God saw something within me that could be made beautiful with the help of a precious little soul who has become my teacher.

> In moments when hopelessness begins to creep into my heart, I can become so aware of feeling overwhelmed that I miss the lessons of holding on to hope. I can even miss the truth that hope is at its most powerful when the answer or solution or resolution or realization of that hope seems the most remote.
*  I have this hope, and I hold on to this hope, because I will never give up seeking to make life better and more full and loving for my child.
*  I have this hope because I know that there are people who have never given up on me, and I have seen how powerful this force of hope can be in my own experience.
*  I have this hope because all things are possible through Christ.
*  I have this hope because when desperation has caused me to lose my hold on hope, I fall into the hands of my Father, who surrounds me with His love and with the knowledge that all hope is found in Him.
*  I have this hope because life has infinite value and because I have been blessed.

> In moments when a victory happens, I sometimes become acutely aware that there is almost no one that can really grasp the significance of this victory because so few see the entirety of the struggle. I can become so aware of the loneliness of incomplete knowledge that I miss all of the blessings that should be my focus.
*  This victory has happened because of the will and the spirit of a little trooper who keeps on trying and is often so blissfully unaware of the fact that this moment was long in coming that nothing dims his joy.
*  I can rejoice in this victory because it means that all of the investment of time and love and care and therapy and intervention (which was valuable in itself, even without and before tangible results) has produced a positive change that has made life better in some way for my much-loved child… which, in turn, gives hope and motivation to keep going!
*  I can rejoice in this victory because it is a reminder that even though I may feel alone sometimes and even though there is no one (other than Travis and I) who has seen all of the parts of the story of our Logan from the beginning until now, I meditate on the fact that we have not been alone. We (my husband, my family, and I) have had each other, and we have had the presence of God with us every step of the way, even in the hardest moments that no one else has ever seen. I can also recall and rejoice in the fact that there are so many wonderful people who have loved our Logan (and still do) and who have been a part of his journey and ours in very significant ways, helping both him and us to reach the vantage point from which we can look back and see all that has taken place. The feeling of loneliness and of recognition that few can fully grasp a victory is replaced with thankfulness for family and friends and teachers and therapists and specialists and doctors and volunteers in support organizations and respite volunteers and Sunday School teachers and workers, and child care givers, and special family friends who have cared for Logan, and Choir and Missions and Vacation Bible School teachers and helpers at church, and people who volunteer to serve as a “shadow” for Logan and focus on his needs, and every kind stranger who has ever spoken a word of encouragement.

It’s really difficult to explain this crazy roller coaster of parenting a special needs child. There are moments of sheer terror or panic and moments of thrills and laughter. There are many times when my heart and my life feels so full of love, and many times when the uncertainty, the questions, and the challenges threaten to attack my peace and steal my joy. There’s so much more involved in the experience than could possibly be contained in this article. While it can be exhausting to experience so many emotional highs and lows involved in the blessing of parenting all of our children and particularly our son who has special needs, there is also a strength that is born out the the knowledge that for every awareness of difficulty and acknowledgement of pain, there are blessings and joys that come to light with the re-focus.

It’s the secondary focus on the awareness of the flip side (to every difficulty) that reveals burdens shared and lifted, victories gained, spiritual lessons, simple joys, and love… always love.

And many, many times, that side (the blessing side, which we see by faith and also because it is very real) is what we’ve learned to see first. We choose to see the positives. There are a lot of blessings! There is a lot of joy!

Many things are the same for us and for other special needs parents as for any parent and child. Highs and lows are experienced in every family. Challenges and heartbreaks come. Victories and heart-warming moments come, too. There are moments of recognition and realization that are so significant and memorable that they become part of the story of every parent and child. Moments of realization with other children might be about discovering an ability or talent that can be nurtured. A moment of realization with Logan might be a flash of recognition that we have been praying the same prayer (that this would be the year, the month, the day when he would finally learn to chew and be able to eat real food) for six years now. A moment of victory with another child might be all A’s on the report card. With Logan, a recent moment of victory involved Logan finally doing something that most children do as a pre-schooler. Last year, there was a day when Logan took a paper out of his backpack when he got home from school and showed it to me. It was the first time he’d ever done that (at age 7 rather than at 2 or 3). A couple of weeks ago, Logan again brought me a paper; but this time, he spoke to me about it.  It was the first time he’s ever brought me a paper and told me about it…at age 8 (almost 9). He brought me this paper (I scanned it so that you could see it here), and he said, “Look, Mama! It’s Logan’s beautiful heart!” I could not have said it better myself.

“Logan’s Beautiful Heart”
It’s purple construction paper with a heart-shaped cut-out. A dyed coffee filter is glued to the back of the construction paper so that it shows through the heart shape.

We certainly cannot deny the fact that our Logan is a child who has special needs. More importantly, though, Logan a little boy. He loves to have fun and be silly. He loves to run and play. He may not be able to experience everything in the same way as his brothers, but he experiences everything with his whole heart. When he’s happy, he is whole-heartedly happy. He makes others happy, too! Logan does have a beautiful heart.

A beautiful life may be different from the lives of others, but it is still beautiful.

Every special needs parent, like us, learns to see beyond the needs, the challenges, the diagnosis, and the uncertainty of the the future to the precious and wonderful gift of their child. There will always be many questions about tomorrow. There are questions about how much progress Logan is going to be able to make. There are questions about how independent he is going to be able to become. There are questions about who will care for him when my husband and I no longer can. In addition to those concerns about the future, there are many needs right here and now. With our five other boys and all of their needs, it is hard to find enough time to do all that we need to do for Logan. He is getting special therapy for his eating issues twice a week, but he also needs a lot of one on one time (as do all of our boys). He needs us to read to and with him, to do math flash cards with him, to play board games with him, and to teach him to do household tasks. There is so much that can be done and so much that will need to be done in and for his future. However, we can’t let ourselves get so caught up in all of the tasks and all of the unknowns that we miss just simply loving and relating to Logan right now. We need to enjoy him, and there is much to enjoy. From his affectionate nature to his quirky sense of humor, to his fun personality and all of the things that he is learning, Logan is an awesome little boy. Developmental targets and statistics and academic goals and plans for the future are all very important, but Logan’s beautiful heart and soul are the most important.

So, while we don’t want to sugarcoat a life that has major challenges and many heartaches that no one else sees, we choose to look for the blessings.

While it’s true that we are always aware of human emotion and human reactions to life’s challenges, we are on a journey toward having a sharpening of vision. Our spiritual eyesight is responding to the lessons of the heart and soul and learning to see blessings first. When we look at our Logan, we do see infinite blessings. We know that many, many others see the blessing of Logan, too, and that’s really what we want as parents.

We want to know that when you look at our child, you see a little heart and soul that is a blessing of uncalculable and infinite worth.

–This post was written by Cynthia Boyd

<><><><><><><><><><><><><><><><><><><><><><><><><><><><>

NOTE: Even though this post is fairly long, it still feels as though I have published it in an incomplete state. There is so much more to write and so much more to learn and experience. There is so much in my heart, and I haven’t been able to put it all into words yet. I can see the value in sharing the words that are already here, even though there is more to come and much more to understand. So, here are the thoughts that have made their way into this revelation of life. I hope they bring understanding and help someone. If this post touches your heart, please share it with others, using this link: http://familysong.wordpress.com/2013/03/07/the-secret-life-of-a-special-needs-parent/

For more on the story of our personal journey, read this post: http://familysong.wordpress.com/2013/01/19/one-brave-little-boy/

Or, read some of the other posts in our “Special needs, Special blessings” category at: http://familysong.wordpress.com/category/special-needs-special-blessings/

<><><><><><><><><><><><><><><><><><><><><><><><><><><>

Note: I love this little sign. The figure is not stopped by the obstacle, he jumps right over it. Parents of special needs children, this is you! You are an overcomer of obstacles, a stubborn warrior who will not give up, and a tidal wave of love that cannot be stopped. Sometimes, this is my sign, too. And, sometimes, I need a sign that is a little bit different. Sometimes I need the sign that shows the little figure being lifted over the obstacle or carried through the storm by the strong hand of Father God, and sometimes I need the sign that shows the little figure and his family camped out in front of the obstacle, working and hoping and praying for victory. If you pan back a little farther on my camp out sign, you will see that the ground on which our campsite stands is not really earth. It is the hands of God, where He is holding us as we wait and work and believe that this obstacle will be conquered. If you don’t have a personal relationship with God through Jesus Christ, I can assure you that nothing else would help you more with all of the challenges of life, and nothing else will make you more aware of your blessings and give you more hope for eternity. If you have questions about life and eternity and God and purpose, please go to our page called, “Do You Know Jesus” at this link:
http://www.worshipsounds.wordpress.com/do-you-know-jesus/

There, you will find links to many web pages that have been designed specifically to answer any question that you might have. Some of these pages even have the capability to be translated into multiple languages. Let us know if you find the anwers you are seeking. We are praying for you!

<><><><><><><><><><><><><><><><><><><><><><><><><><><><>

Here’s a music video with some precious photos of special needs children and Moms and Dad. It will bless you!

<><><><><><><><><><><><><><><><><><><><><><><><><><><><>

Attention, Please! It’s a wake up call!

Every day is a new beginning!

What gets your attention?  Sometimes events or messages from others that take us by surprise can be heavenly wake-up calls.  After we recover from the shock of finding out that things were not as we thought them to be, such a wake up call can be a very good thing.  We are forced to re-evaluate and to move forward with a truer perspective, often requiring positive change or increased diligence on our part.

All of us have ‘blind spots’ in our lives.  Often, these are areas of endeavor that seem to be going well.  We’ve been working and striving, thinking that we are doing our best.  Then, along comes something that rocks our world.  It could be something that we observe, something that someone says or does, a scripture that speaks to our hearts, or just a stunning realization that there is much more to be done.  While we’ve always known that there is more, perhaps we may not have realized how much more.  Or, perhaps we’ve thought that we are making good progress.  A new level of awareness can be a shocking wake-up call.

Whether the area of concern is relationships, parenting and preparing our children for life beyond home, something related to work, an area where self-improvement is needed, or an area of spiritual discipleship or discipline that is not where it should be, we must suddenly re-evaluate and re-prioritize in order to address this need which has come to our attention.  It’s a ‘front and center’ moment of time when we realize that we must step up to a new level of effort, of competence, or of intentional focus.  While being confronted with addressing the need at a new tier of possibilities and priorities may at first seem dauntingly impossible, unfair, or even hurtful, it’s actually a very good thing to have an aha! moment.  It is these times of keen awareness that help us move forward from the place we thought we had reached to a higher mountaintop beyond our range of vision.  Sometimes we can’t see the end (or the top), and we don’t know how to get there.  The alternative is to stay where we are, put our blinders back on, and bumble forward in the hope that somehow everything will be alright.  We may be very close to the edge of a precipice of mediocrity without realizing the danger.  When it comes to fulfilling God’s purpose for our lives, the precipice of mediocrity is not somewhere that He is willing to let us stay.

What to do then?

It’s time for some fresh perspective.  It’s time for us to take a new look at every area of life, but this time we’ll need some help with our blind spots.   First, we must we willing to lay down our blinders.  We must let go of our ideas about where we are and where we need to be in our walk with the Lord and in every area of life.  The wake-up call that we received, in whatever form it came, was a blessing in disguise.  It allows us to have a new beginning.  In order to move forward with the Lord in any changes that we need to make, we first need to spend time in prayer and wait on the Lord to reveal His direction in every area.  He will guide us if we trust Him to take us from right where we are and move us to where we need to be.  Often, our way forward is one day at a time, one step at a time, one moment at a time.  We are not paralyzed as we move forward.  We are taking steps of faith with great hope because we trust that God will cause all things to work together for good.  (Romans 8:28)  We must move forward in doing what we know to do.  If there have been areas of complacency in our lives, our work, or our calling to serve the Lord, we know that we must move toward re-connecting with God’s heart of compassion, His purpose, and His urgent call to our hearts, “Redeem the time!”

In Music and Worship ministry, as in any area of life, our positions of leadership carry great responsibility.  We must stop making excuses and begin again to use all of the resources that we have been given to passionately declare the love and mercy of our God.  Most of our brothers and sisters in the congregation will only awake to their own passion for following the Lord when they see that passion in their leadership and recognize that the time is short, the laborers are few, and the need is great!   What kind of impact can we make in our world?  We have so much more to work with that the small band of disciples that watched Jesus ascend to Heaven after they had been given their “marching orders.”  (Matthew 28:18 – 20)  Perhaps we have some problems with our technical equipment, some personnel shortages, inadequacies with our buildings, tight budgets, scheduling issues, and attitudes to overcome.  We’ll never do the work of the Kingdom as long as we allow these issues to get the better of our enthusiasm or to zap our zeal for the Lord and for serving Him.  (Just say ‘no’ to zeal zappers!)  So, we must get busy with the resources we’ve been given!   We’ve had our wake-up call.  God has gotten our attention, but He wants more.  He wants our hearts, our minds, our souls, and our strength!  We can’t just watch a downhill slide anymore!  It’s time to start pushing back the tide, pushing forward, and doing what we are called to do.  He will meet us where we are and be there each step of the way!

Dear Lord, in every area of my life, You have a plan.  I praise You, O Lord.  Your steadfast love endures forever!  Your wisdom is unsearchable.  Your goodness is absolute.  Your mercies are new every morning!  You are the God of restoration and redemption.  Lord, take my life, my feeble efforts, my pre-conceptions, and my responsibilities.  Take it all.  Make it Yours.  Help me to continue to lay it all down everyday, knowing that only You can carry Your purpose forward in my life.  Where I have messed up, help me make it right.  Where I have fallen short, show me how to make up the difference with Your help.  Where my vision has failed, give me Yours.  Where my hopes have died, restore them.  Where hurts have crippled or confused me, shine Your healing light.  Touch my heart with your compassion and mercy.  Help me to see every person through Your eyes.  Restore the joy of my salvation and the zeal of fresh commitment.  Give me a heart that thirsts for You.  Remove the sickness of complacency from my life.  Make me new, Lord.  I love you.  In the name of my precious Savior, Jesus,….Amen.

Note:  For more perspective and inspiration on living a life of intentionally seeking to bring God glory in every moment, see our post entitled “Lifestyle Worship.”   Blessings to you as you move forward in your walk with the Lord and seek His purpose in every area of life!

C. Boyd

<>*<>*<>*<>*<>*<>*<>*<>

Do you know Jesus? 

The decision to ask Jesus to come into your heart and life as your Lord and Savior is the best decision you could ever make!  The one true God is ready to give you forgiveness and eternal life as soon as you understand your need for Him and believe on the name of His only Son, Jesus, for your salvation.  Here’s a blog page link to help you find the answers to your questions about Jesus.  http://www.worshipsounds.wordpress.com/do-you-know-jesus/