Behavior and Special Needs

As a mom, I have lately become very discouraged at the challenge of raising my boys to become men. The constant whining bothers me immensely - not simply because it gets on my last nerve, but because it is wrong. The bickering and arguing among themselves bothers me - not simply because it gets on my second-to-the-last nerve, but because it is wrong. My children have sinful hearts, which is evident quite often, but how do you teach this to a young child? I am able to see it, but only because I have been illumined by the work of the Holy Spirit in my own life. They will not feel conviction of sin until their hearts are changed by this work. Still, I want to teach them sensitivity in general. By teaching them to be sensitive to others and to their own behavior, I believe they will remain sensitive throughout their lives. But how, exactly, is this done?

For parents of "special needs" children and "typical" children, what have you done to encourage sensitivity toward right behavior in your children? I would especially be encouraged to hear from those of you with boys.

I think this is an important area for all of us to consider when our children are very young. They pick up habits - good and bad - so easily, and it is always harder to unteach something than to teach it right the first time.

It's just a little Tetris, right?

Some of our children with special needs are particularly drawn to video games, television, etc., be it for visual or auditory stimming, or a host of other reasons. This article will give you something to think about.

From Down to Up

-Below is a re-post of something I had written for my personal blog, but now I have a more appropriate place for it. -Allison

As the mother of two boys with gross-motor delays, I am constantly aware of their inability to do "normal" childhood things. They cannot run in the yard with friends, or ride bicycles in the driveway. Their instability makes it hard for them to stand and play for long periods of time, and so they spend a lot of time on the floor. Because they fall frequently, they wear helmets to protect their heads from furniture and objects that do not pose the same risk to children of typical development. Their speech is not exempt from these issues, and it can be difficult for those outside the family to understand their words.

But my children are not clueless about their supposed inadequacies. Speaking to them, you might think they don't care or understand that their bodies are different. Those developmental delays do not affect their minds, however, and the older they get, the more aware they become of their challenges.

Two days ago I began reading a story to Daniel from a child's anthology book. It was called Wilma Unlimited, and was the "true story of a young woman who overcame the crippling disease of polio to become the world's fastest runner". As I read, Daniel looked up at me quizzically when my voice changed. I could not help but cry over the beauty of the story, and dream of the day that my children might someday accomplish great things in spite of their handicaps.

After finishing, Daniel stated very matter-of-factly that he could not walk, but that he wanted to. I hugged him, kissed the top of his head, and told him I wanted that too. He knows he is different, and he is learning that sometimes people think that different is equal to bad. When his legs are "in the way" of other children and he is not able to easily move himself, he has been called "mean". My heart aches for him over this, but I know that I cannot completely shield him from the coldness of a sinful world. He will be passed over frequently because of his physical lack, but I pray that he becomes a gracious young man who is strong in character and compassion for others.

Yesterday was another occasion where we were exposed to the reality of "other children". While at the YMCA, Daniel played in the children's room with other boys and girls. I asked him later if he had fun playing with the other children.

"They not play with me, Mama."

But then we went to Wal-Mart, and there we met a little girl with her mother. Daniel was in his stroller/wheelchair and the girl was in her mother's cart. She was laughing and playing and seemed to really be enjoying herself. When we stepped in line behind them, this little girl immediately said hello to Daniel and waved at him. She asked about his blanket, which had obviously seen much love and affection, and Daniel smiled at the attention and returned the greeting. To this little girl, there was nothing different about Daniel that would keep her from treating him like any other child. She didn't ask why he was in a wheelchair or why his words weren't as clear as hers. She wanted to know all three of our names, not why the boys couldn't walk. It was all I could do not to hug her mother and thank her for having such a sweet child.

What really struck me about this exchange, though, is that the sweet little girl at Wal-Mart had Down Syndrome. She herself was not "normal" by the world's standards, but she wasn't constrained by that standard and acting within it's bounds. I do not know what level she was at in cognitive age versus chronological age, but she was kind and thoughtful and did not let preconceived notions about wheelchairs and funny speech keep her from talking to my boys.

I don't know exactly why this little girl was so especially sweet, except that the people I have talked to with Down Syndrome children all testify to this. What is it about them that makes them so accepting of others? Do they know they are different and so are determined not to look at others the way others look at them? Or maybe that is just a special gift they are given to compensate for the challenges they face - to make others see the good over and above the different?

That is how I want my children to be. While they must be taught that their bodies do have limitations, their minds do not. They should have the ability to be kind to others, no matter the person's station or function level. A person appearing to be different should not prevent them from showing the simple kindness of a 'hello' and a smile.

This is very, very hard for most people, myself included. Still, we have an obligation to kindness toward others. We who are the strongest in society have much to learn from those who are considered the farthest from it.

A Quiet Beginning

The title of this post is significant for many reasons. As we know, all things have a beginning. Whether they be big things, small things, right things or wrong things, they all begin at some point - in time or prior. Often, we do not know that we have begun something, when in fact, something was begun through us. As the starter post for this blog, Unhidden Frames, I will comment on three beginnings, and my thoughts on their origin.

My name is Allison, and I am a single mom to two precious boys. My journey to this point in life has been one of steeper inclines and deeper downgrades than even the wildest roller coaster. At the time of this writing I am 27, wishing for all the world that I were 30 because that just seems like it would make more sense. 27 years is not enough time to prepare for certain things, it often seems, although I suppose tacking on another three would not matter either. Still, this is my finite mind attempting to make sense of things I cannot fathom.

While growing up, I was blessed to have a family that encouraged learning at every level of development. I was pushed to stretch myself and my mind into realms that felt uncomfortable at first, but later became home. We had books everywhere, and very early on I discovered areas of interest that have hung with me long into adulthood. I have continued to research these domains, longing for more information to further my understanding. As a 'teen, I developed an interest in stories detailing the lives of children with significant handicaps, be they mental, physical, or emotional. Considering that there was no one in my family with any significant delays in these areas, I am not certain what prompted my interest. I read books about autistic children, children with Cerebral Palsy, and children whose greatest handicap was not having a loving family. I did not seek these books out, but when they came to me, one way or the other, I devoured them whole.

What struck me most about each book, was the author's intent on demonstrating the real person inside the bodies of these children. Despite their internal or external deformities, each boy and girl was a whole person. Their lives were blessed, and they in turn, blessed others with their own individual gifts. Those gifts often went undetected until a discerning eye looked past the obvious to the subtle. These books encouraged me, and developed in me a desire to see more in people than my eyes could behold. Was this the beginning of something?

After college and several jobs, I married a man with a condition that has yet to be diagnosed. At that time it was called "cerebral palsy" for lack of a more accurate term. This was an improper diagnosis, and knowing from family history that any children we bore might have this same affliction, I began seeking information immediately. I also re-read some of the books from years past to encourage me in the search. There was little time to do this as baby #1 came along just 9 months later. As expected, he showed signs of delay in early infancy. Still, there was no subduing the pride of this new mama, and he gave me new resolve to seek answers. 18 months later, baby #2 gave yet a stronger nudge to find solutions as he showed similar yet more significant delays than his brother. Was this the beginning of something?

Throughout the last 4.5 years of therapies and programs geared at helping my children reach their full potential, I have found only one diagnosis. There is no letter from any doctor giving a name to my children's condition, neither is there a test that has labelled the genes or chromosomes or what-have-you that have caused these "problems". When people ask me what is "wrong" with my children, I cannot give an answer they will understand unless they know the Maker of all little boys. My children's diagnosis is the same as any other child on the face of this earth, but only those whose eyes are opened to Truth can see it. Psalm 139:13-16 reads:

For Thou didst form my inward parts;
Thou didst weave me in my mother's womb.
I will give thanks to Thee for I am fearfully and wonderfully made;
Wonderful are thy works,
And my soul knows it very well.
My frame was not hidden from Thee,
When I was made in secret,
And skillfully wrought in the depths of the earth.
Thine eyes have seen my unformed substance;
And in Thy book they were all written,
The days that were ordained for me,
When as yet there was not one of them.

We often hear these words quoted or discussed by men and women with strong voices and bodies. They speak to thousands about the beauty of unborn children and the value of life. Beneath their flowing words, play children who can run and skip and fall without great risk of injury. It is easy to apply these words to those bundles of unrepressed energy and charisma. Their tiny lives echo a beauty and wholeness that the physical eye can readily see. But beside these children, dwell the bodies of girls whose arms cannot rock their baby dolls, and boys whose legs cannot tear across the yard in a foot race. In this patch of children are boys and girls with minds needing steady input to grasp concepts that seem so simple to most. With their overloaded systems, certain sounds and lights give cause for great distress when other children might revel in the "fun".

What about these children? Are they less whole or beautiful? What truly defines the presence of ability in a child?

That's just it: presence.

When David wrote Psalm 139, he did not specify that his poetry applied only to children who could take themselves to the toilet and tie their own shoes. He did not cordon people into groups and say that certain parts applied to certain people. No, these 4 verses apply to every single human being who has lived, is living, or will ever live on this earth, because the truths he wrote are truths about the one who made us all. ALL of us were weaved in our mother's womb, we ALL were fearfully and wonderfully made, NONE of us were hidden when our frames were made in the secret places. Despite the differences in each person, their mere existence in this world should be enough cause to remark on the glory of God as their Maker.

For quite some time now, I have had a steady need to write, be it through journals or essays, some poetry, and simple letters to friends. The whole "blog phenomenon" gave me yet another outlet for composing, and even gave me readers! Knowing that people - strangers, if you will - would read what I had written, I knew the opportunity for encouraging others was ripe. After several years of meeting other parents of children with special needs, and my still constant journey through the maze of parenting these wonderfully made frames, my hope is that this blog will help other parents on their way. Not one of us with a child or children who appear "abnormal" is alone, yet the feeling of isolation is very real. Because our daily lives do not match up with, or even mesh with typical families, we can often feel discouraged and saddened by what we do. It does not diminish our love for our children, but it can often dampen the fire of devotion that should always be present. I want to encourage others, and I NEED to be encouraged by others of like mind. Together, we can glory in the work of God in our children's bodies as we pray for the work of Christ and His Spirit in their hearts.

So is this the beginning of something?

I think not.

Just like the Psalm says, "...in thy book, they were all written, the days that were ordained for me, when as yet there was not one of them." All the whos and whys and hows of what we are doing now is the result of a master plan that had every detail in mind. Before even my own birth, my children and all of their individual needs were already in line to be my own. As a teenager, I could see no logical reason for my interest in the stories of handicapped children, but now I can. And what about this desire to share with and learn from other parents? It's all just part and parcel of a very quiet beginning, before time, in the mind of the One who made us all.

"...and my soul knows it very well."