Thursday, December 30, 2010

An “Off-Duty” Grandpa’s Perspective On Autism

Just after the beginning of the current School-Year, I started working, as a Para-Educator, with 10 little guys in a Special Program (Structured Communication Center) Class. The “Special Program” is for kids, ranging in age from six to 11, who have challenges, primarily, stemming from Autism. Other contributing factors include some retardation in mental and/or physical development. Those closest to me know how this came about. If you’re surprised to learn that I’ve been working in this capacity, I’ll provide some explanation later. But, first, I want to tell you about what a wonderful unexpected and unplanned (by me) blessing this has been.

When I say “unexpected”, one aspect of this is that I have to admit, if a basic job description for this position had been given to me before I started, it’s likely that my reaction would have been, “Whoa, that’s not for me!” That, in fact, has been a common reaction I’ve gotten when I’ve told others what I’ve been doing. It has seemed that their summary view of the job is as a babysitter for some really hard-to-be-with kids. With that in mind, I want to share some details about my experience.

The Guys

Each of my “10 little guys” has a unique story. I’d love to share their stories with you, in complete detail, in order to share the blessing I’ve received through my experience with them. However, doing that would inappropriately compromise their privacy. Hopefully, without improperly disclosing private details, the following summaries of my experience with each of these “little guys” will help you connect with my sense of being blessed through this:

- A seven-year-old whose challenges include a soft pallet – The first time I heard him speak, I had no clue what he said. Later, I learned that he is fluent in American Sign Language (ASL) and that his IQ is higher than anyone else in the class, including the adults. Corrective surgery (for the soft pallet) has been a consideration but, presently, it appears that this will self-correct, with growth. It’s great to hear him speak more clearly, daily, while seeing him progress with his curriculum and to be able to move to taking more of his subjects in Gen Ed classes.

- An 11-year-old, who is probably the most challenged kid in the class … probably more like what I and others have in mind when we say, “Whoa, that’s not for me!” Trying to work with him can be very frustrating. I’ve had more than one occasion where my sessions with him involved him slumped on the floor, while I waited for him to become compliant. On the other hand, I’ve had him go through multiple exercises for simple rewards and a high-five. My favorite times with this “little guy”, so far, have been when he just looks me in the eye and smiles or laughs or when he walks over to put his head on my chest or when his exercises are done and he can sit in his rocker while we listen to a James Taylor CD. Although I do nothing to violate the school district’s policy relative to “the separation of Church and State”, I’ve found that my silently praying for my “little guys” is acceptable and I know it’s good. As you might guess, this is how I spend much of my time with this particular “little guy”.

- Another seven-year-old, whose biggest challenge is the need for routines and dealing with any changes to those routines - Sometimes it’s possible to reason him through this and some times he just “melts down” and ends up in the Quiet Room, which is available for helping to deal with “melt downs”. My most notable experience with this involved Recess. I had marveled at the complexity of a routine that this “little guy” would follow, repeatedly, on the playground. One day, as he was running this routine, he looked at me and said, “Wap, Wap.” I asked him what he meant and again, he said, “Wap, Wap.” I, then, said, “What is that? Is it a sound?” He said, “Yes.” So, I asked what makes that sound?” and he answered, “Two Waps.” This “little guy” can be quite amusing so, at first, I sort of thought he was making a joke. Eventually, I figured out that he was telling me he was running laps (Waps) and he was keeping count. When I mentioned this to the Teacher, I discovered that this is a behavior known as “Stemming” and that it is to be discouraged. As you might expect, the first time I had to deal with discouraging this on the playground, this “little guy” ended up in the Quiet Room. Thankfully, we discovered that by taking a soccer ball out to the playground and kicking it around with him, encouraged him to use the soccer ball to interact with the other students and since then, no more “Waps”.

- One other seven-year-old is easily the most natural athlete in the class. I’ve said he is like “a Cirque du Soleil performer, in training.” Most of his time on the playground, he spends by himself on a swing. I’ve seen him swing high enough that, on the back-swing, he is looking at me over the top bar of the swing set. On one occasion, at the height of his forward-swing, I saw him dismount. As you might expect, this nearly caused heart failure in me but he perfectly “stuck” the landing. Since then, I’ve been on the lookout for a gym program where he could fit in and fully develop his athletic gifts. The flipside of this is that getting him to do anything that isn’t athletic can be very difficult and since he is “easily the most natural athlete in the class”, getting him to be compliant is a challenge … dealing with his aggression can require more than one adult. The fact that he is completely non-verbal makes dealing with this even more difficult. With all this said, when you do get him to sign a new word and he gives you an ear-to-ear smile, as you give him a reward and a high-five, you truly relish that small progress.

- The six other “little guys” in the class have their unique stories too. The biggest and oldest is still quite innocent and he knows more about dinosaurs and the eras they lived in than anyone else I know. Another 11-year-old has some genetic defects that have significantly weakened him physically and mentally. You couldn’t ask for a sweeter little guy, though. Some place along the way, he must have really enjoyed Disney’s “Beauty and the Beast.” Almost anytime he is asked about a name, you can hear him softly say, almost under his breath, “Gaston!” Another “little guy” has the attention span of a puppy but his graceful athleticism, his flair for the dramatic and his tendency to find anything he can find to wear as a mustache could lead him to Hollywood. A 10-year-old is one of the most difficult personalities to deal with because, when given a behavior choice, he will consistently go with the most annoying. Though it requires extreme patience, underneath that you find an ability to be quite tender with others. One other seven-year-old can be unresponsive or very slow to respond and his verbalization is very little and very subdued. When he does pay attention, though, you can tell that he has much more intelligence than you might give him credit for. Last but not least is the smallest “little guy” in the class. Although he has some challenges with socialization, communication and learning; his biggest challenge is his need for eating therapy. He’s a lovable little character and if the eating therapy can be successful, his growth and development should improve.

As I’m sure you can tell by now, these “10 little guys” had me by the heart in no time flat. By the end of my first week, I found myself thinking about things like how much I’d like to be present to see two of them (who currently do work at about the same level) walk across a stage to get their High School Diplomas. Much of this may come from the fact that I consider myself an “Off-Duty Grandpa.” I have three grandchildren who are close to being grown up, who live about 2500 miles away. Though I’ve wanted them to be a part of my life and vice versa, that hasn’t happened. I, also, have a 2 3/4–year-old Grandson who lives about 1000 miles away. We’re more a part of each other’s lives but the 1000 miles keeps that relationship from being all we would like for it to be. I guess the Net result of this is that there was a pretty good sized empty spot in this “Off-Duty” Grandpa’s heart that these “10 little guys” fit right in to.

Keys To The Lock

Although I can’t give you specifics about my “10 little guys”, without inappropriately compromising their privacy, I want to encourage you to check out some related stories that are publicly available. One of these stories can be found in a book entitled Unlocked. Coincidentally, during my first couple of weeks working with my “10 little guys”, this book was released by, a local Christian Writer, named Karen Kingsbury. A local newspaper article says that Unlocked is about “kindness that unlocked a soul” by helping a boy “… break through the barriers of Autism.”

Among the great blessings for me, working in this Special Program, has been getting to witness six other adults working tirelessly to do all that they can to help my “10 little guys” find the “keys to the locks” of their individual “barriers.” The Special Program Class that I’ve been working in is part of an, otherwise, General Education K-5 Elementary School. The class is headed up by a Certificated Special Education Teacher, who is assisted by six Para-Educators. Two of these folks are Moms who have “little guys” of their own at home who are dealing with the challenges of Autism. Another is a woman who has raised 10 kids of her own plus she has worked in Special Ed for over 12 years. These are truly amazing people that I’ve been honored to work alongside.

I’ve, also, been blessed to get acquainted with some extraordinary parents. Here too, it’s necessary for me to discuss this in a way that doesn’t inappropriately compromise privacy. So, I’ll just note that I’ve witnessed the difference a family can make, resulting in one “little guy” being among the most high-functioning in our class when his diagnosis might lead you to expect him to be more along the lines of the “hard-to-be-with kids” folks have in mind when they say, “Whoa, (that job is) not for me!”

Beauty From Ashes

As a man of faith, one of the most important related aspects to a topic like this is to address questions like, “Why would a loving God make ‘your little guys’ Autistic?” For me, the answer is pretty simple, “He didn’t.” There was no Autism in the Garden of Eden and there will be no Autism in Heaven. Autism only exists in this Fallen World. What a loving God does about that is the important observation to make. I think this is best expressed in Scripture, in Isaiah 61:3 where it says that God’s aim is “To give them beauty for ashes.”

The adults I’ve mentioned in this article are great examples of this. These are all intelligent, well-educated, attractive people who could be “doing better for themselves” in a number of other pursuits. But, they are following what God put in their hearts to lovingly pour all they can into these “little guys” in order that they can do “better for themselves.”

God has seen to it that my own story falls under this heading too. Earlier, I said, “If you’re surprised to learn that I’ve been working in this capacity, I’ll provide some explanation later.” Well, a full explanation will require another article but here’s a bit about that. When Ruth (my Wife) and I decided to move to this area from Southern California, about 5 ½ years ago, we felt led by the Lord to do so. Our plan and expectation was that, with our changed circumstances, we would be fine financially with me working at a mid-level Sales or Sales Management job, while Ruth wouldn’t have to work, if she didn’t want to. After more than two years of things not going the way we expected for me, we decided it would be prudent for Ruth to go back to work. As you might expect, we were regularly wondering why God had led us here and why things weren’t going the way we had expected them to. My first glimpse of starting to understand this involved the job that Ruth ended up in. Actually, I need to be circumspect about that too. Let me just say that her job involves working with some youngsters whose epitaph, according to me, would surely be “Never Had A Chance!”, if it wasn’t for the work that Ruth and her colleagues are doing. When I started hearing some of the successes coming out of that environment, I started recognizing why God had called Ruth out of Orange County. Eventually, I even recognized that “things not going the way we expected for me” was a circumstance God had used to get Ruth where He wanted her. Since I’m not the “quick-study” in our family, it took me another three years to get where I am. There are numerous details that I could share about what went on with me in those three years but the important thing is that I finally found the door that the Lord had opened for me and on the other side, I found an “Off-Duty” Grandpa and “10 little guys” who really needed each other.

Before moving on from how my story falls under this heading, I want to share an important aspect about how some folks have reacted to my doing this work. My background is primarily in Sales. In recent years, I’ve developed a minor reputation as a Writer. Considering that and how different it is from the work that I’m doing as a Para-Educator, it’s understandable that this has taken some folks by surprise. Beyond that, I’ve sensed that some may think that, in using my time to do the work I’m doing, I’m wasting “greater talents.” This came out most poignantly for me, when I attended an event where a wealthy friend of mine was featured as the Keynote Speaker. One thing I admire most about this friend is the metaphor he uses to express his view of the wealth God has blessed him with. He views himself as “One of God’s UPS Drivers” and he says, “As long as I deliver what He puts on my truck where and how He wants it delivered, He keeps putting more stuff on my truck.” While this friend was speaking, at the event I mentioned, another friend and I were commenting on what a wonderful job the Keynote Speaker was doing of using the talents God has blessed him with. Then, she leaned over and whispered in my ear, “You should be doing the same with your talents.” I didn’t ask but I think she had my writing ability in mind. Anyway, I responded by leaning over and saying, “You’re familiar with the metaphor that (the Keynote Speaker) uses about being one of God’s UPS Drivers?” She nodded “Yes.” Then I said, “Well, He gave me a school bus. It has 10 really important packages on it. It was totally unexpected but that’s what He gave me.”

Another great story that falls under this heading involves a well-known man who I admire … Chuck Colson. Again, “coincidentally”, during my first couple of weeks, working with my “10 little guys”, I heard Colson and his Daughter, Emily, on Focus On The Family’s radio broadcast. The Colsons were on to talk about Emily’s book Dancing With Max, the story of Emily and her Son, Max, who is Autistic. As you may know, Chuck Colson had a career as a Marine and he served in the Nixon Administration. He, also, served time in prison for his role in Watergate and coming out of prison, he founded the now overwhelmingly successful Prison Fellowship Ministries. With all that understood, Colson said that the two most daunting circumstances in his life were facing going to prison and watching his Daughter, as a single-parent, raise a child, who is Autistic . Out of this, though, came a man whose life had been too busy to spend much time with his Daughter when she was growing up, who now spends time with Max as his only “agenda item” and when he does this, of course, he is spending time with that Daughter, Max’s Mom. Now there is some really great “Beauty from ashes”!

Your Turn!

When working with these “little guys”, especially the non-verbal ones, it’s not uncommon to show them how the task before them is done and then to say, “Your turn!” In closing, I want to encourage as many as I can to consider how you can take “Your turn!” and be the source of kindness that can “unlock” souls by helping our children break through their individual barriers.

In case you haven’t noticed, my “10 little guys” are all guys. I think it was my second day on the job when I asked the Teacher, “Where are the girls?” The answer is that Autism is mostly found in boys. Not long after that, I thought about the staff and the opposite question struck me, “Where are the guys?” Aside from me, the rest of the staff is female. In fact, there are 51 employees at our school and only seven are male. Sadly, it’s all too common to hear stories like that of Emily Colson ... a child is born, who is Autistic and the Dad disappears. Hopefully, something I’ve said about my “10 little guys” and how working with them has blessed me will inspire others to do likewise. But, I really want to encourage more guys to do so. Seeing a good example of an adult guy being an adult guy can make a world of difference to these “little guys.”

If you’d like to learn more about Autism and start getting a better idea where you might fit in and help, a couple of good places to start are Autism Speaks and the Autism Society of America.

Especially For My Pro-Life Friends

The Pro-Life organizations I’m familiar with do all they can to provide the help needed for babies who have challenges that some would use as justification for their abortion. Babies born with Down Syndrome may be the most common example here. However, I don’t know how active Pro-Life organizations are in helping to provide for the needs of babies born with Autism. Perhaps that’s because the cause for Autism is, as yet, unknown. But, it’s being worked on and once it is known, I fear, prenatal testing will be developed for Autism. Joni Eareckson Tada recently released a book, entitled Life in the Balance, that broadly addresses this. A thumbnail description of Life in the Balance says:

Life in the Balance helps readers discover answers to the difficult issues covered by the evening news (street violence, abortion, autism, genocide and stem-cell research).”

Perhaps not so coincidentally, Chuck Colson wrote the Foreword for Life in the Balance. In that, Colson says:

“Joni will teach you how to fight on behalf of those who are quietly being targeted for extermination.”

My encouragement to my Pro-Life friends is, if you’re already involved in helping to provide for the needs of babies born with Autism, remain diligent and be alert to the mounting threat alluded to in Life in the Balance. And, obviously, if this is a topic that has eluded your attention to some degree, I want to encourage your awareness and your activism.

Late Breaking News!

One detail I’ve left out here is that I actually came into this role as a Substitute Para-Educator. The woman who was doing this job moved, with her Husband, to another part of the country. After my first week on the job, the Teacher asked me to continue as a Sub, until the job was filled permanently and she asked me to apply for the job. I did but a person who is already a full-time employee in the school district also applied and of course, she had seniority. So, it looked like my sixth week would be my last week with my “10 little guys.” Surprisingly, the other applicant decided to stay in her current job. The job was formally offered to me, I accepted and since then, I’ve been working as a full-time Special Program Para-Educator. Yay!!!!!!!