Thoughts on a Recent Experience

I recently attended an event where a guest speaker, a father of a young woman with Down’s Syndrome, spoke to the audience about loving someone with special needs.  I was excited to attend the event; as you know, it’s a subject that is close to my heart.  I am appreciative of the service and the sacrifices this man has made. He knowingly chose his path when he adopted this young girl.  I also appreciated his testimony of Christ.

To be honest though some of the rest of his comments were concerning to me.  Well, if I’m being completely honest, I had to fight tears and if I hadn't been sitting on the front row, I would have left.  I thought I would relate to a parent who has a child with disabilities, and I did in some limited ways, but in most ways, I felt a world apart from this parent. I don't consider myself to be thin skinned and I’m not easily offended about my child. I don’t mind talking with others about his conditions or the effects of them.  And, I love to talk about him.  Thus, I've had to spend a lot of time examining what my issues were with what he shared.  And, now, if you will, I’d love to share some thoughts with you.

What is a disability?  The dictionary defines it as a “limitation in the ability to pursue an occupation because of a physical or mental impairment.”  The legal definition is similar but defines a person as being disabled if they have a physical or mental impairment that substantially limits one or more major life activities. 

We all know that our treatment of those who are disabled has changed over the years.  At one time, they were shunned as social outcasts chaining them to a life of poverty.   In another time, they were grudgingly tolerated by their families and seen as an economic liability.  Perhaps in the worst times, they were treated as “useless” and gassed in euthanasia programs.   Today in most cultures, we have seen the effects of the efforts to eliminate prejudices and, while varying degrees of treatment are still seen, many disabled individuals enjoy a better life than those disabled individuals of the past.

In our culture, we can see the effects of the efforts in education programs, in facilities, and in communication styles.  We have been taught to replace words which have become derogatory with more “pc” terms, such as:  cognitive disabilities to replace retarded, brain injury to replace brain damaged, and short stature to replace midget.  Yet, we all know that pc terms can change and it’s hard to keep up with what’s in and what’s out.  (I recently read that the correct term is accessible parking, not handicapped parking.)  In response to the constant changes, many now often use the more collective term of “special needs.”

When my youngest son was about 4 months old, our doctor said, “He definitely has special needs, but he may never get an actual diagnosis.”  What does “special needs” mean? 

In our case, it meant my son, who is now 7, is cognitively aware yet we would have to learn to read his communications. He lifts his eyebrows to say yes, shakes his head if he really means no, sticks his lower lip out to pout, pretends to be asleep if he thinks it’s too hard, and laughs when he’s tickled. For my son, special needs means that we would need to spend hours teaching his brain how to see images, helping him learn to swallow, moving his arms and legs for him, and generally bringing the world to him to explore.

As one can imagine, it has been a growing experience for our family as we have ventured into a world with our sixth child that was previously unknown.  And, as I’ve thought about the guest speaker’s experiences and my feelings in response, there are three conclusions I have come to:  First, I believe all humans want to be understood.  Second, I believe we all want to be seen – really seen.  And… I believe we all have special needs.

Some when seeing my child, who often is in a wheelchair with unfixed gaze or head down, would be surprised to learn that he has preferences.  I’m often asked if my son has a favorite toy.  He does not seem to have a favorite toy. (Oh, how I wish I knew for sure!) But, he has a lot of favorite people.  He LOVES for people to talk to him, read to him, sing with him, and be with him.  He has preferences for books and music.  He declares his frustration if I’m not fast enough about turning on music when we get in the van. He doesn't always want to share his stuffed animals with his 9 year old sister.  Like so many other children, he can become discouraged or frustrated when we don’t understand. 

Isn't that what we all want?  Don’t we all want to be understood, to have our needs met and to be heard?  Don’t we all want to be able to communicate our feelings, thoughts, and desires to others?  Can you imagine if everyone just smiled at you, said your name and gave you a quick pat on your head, as if they couldn't really hear you?

My son has a condition called cortical vision impairment, which means that some days his brain can process the images from his eyes and some days they can’t.  This means that I don’t know how much he can see on any given day.  I know he can use his eyes to select things from a computer screen on a device called an eye gaze.  I know I have to wait for him to find the picture in the books I show him.  I also know that sometimes others avoid looking at him.   Yet, he wants to be seen.

Isn't that what we all want?   Don’t we all want to see someone’s eyes light up when they see us? To see a hint of recognition in their eyes?  To be acknowledged.  What if people looked past you when you entered a room, pretended you weren't there, or averted their gaze?  Would you look at others?  Would you continue to reach out to others?  Would you know how important you are?

   

Often there seems to be a fear or perhaps an insecurity of how to communicate with my son.  Some well-meaning people respond by just talking to me about him as if he’s not there.  Some well-meaning people respond by looking past both of us.  And, some bombard me with question after question about his diagnosis – the why’s.

Yet, we are all unique and differently-abled.  We all have special needs.  I do; and, you do.  Perhaps they do not fit the legal definition of disabilities.  Yet, each of us have special needs that when met we function at our full abilities, and when not met we may not function at all.  Some of those special needs may include being heard by others or being seen by others.  Yet, there are lots of others.  Some may need additional health care to thrive. Some may need others’ patience as they work through grief.  Some may need a mentor to age gracefully.  Some may need help reaching everything.  Some may need a pet to calm their anxiety.  Some may need an interpreter to communicate.  Some may need others to reach out to them in friendship.

For me, it’s hard to articulate my needs.  It may sound odd, but perhaps one of my special needs is to be needed – beyond my daily roles. 

What are your special needs? 

I believe as we strive to understand and see all the people who cross our paths that we live more rich lives.  And, I believe when we acknowledge that we all have special needs and help to meet whatever those needs are for the people in our sphere of influence that we give the greatest gift:  unconditional love.

I am thankful for the guest speaker who blessed my life and caused me to ponder these things.   I am especially thankful for my son and his special needs.  My heart swells and my eyes leak when I think about the couple of times when he has fixed his gaze on my face; he has seen me and understood me.  I pray I can always do the same for him.