There are two words that have changed the entire course of my life. I have both embraced and detested them, revered and despised them! I have hidden from them at times in the past and at other times, celebrated them. They are both in my face and in the back of mind in every activity I find myself. They constantly occupy my thoughts, words, and deeds.
Those two words have caused my highest mountaintop moments and my deepest valleys of depression.
Those two words?
Basically, my life is the trifecta of Special Needs. First, you have my Special Needs. I am a person with cerebral palsy. This is something that I deal with every moment of every day. Simple tasks have been conquered due to rote memorization or a simple workaround. In fact, I am typing this right now on a USB keyboard because my left thumb always taps the mouse pad on my laptop. The keys are hunt and peck, with 25 of the letters coming from the right hand, while the left is only responsible for the SHIFT and the A.
I awake early every morning to spend time on the exercise bike to keep my leg muscles toned so I don’t get tired from walking. I look for patterns on the ground to keep me walking in a straight line. I arrange my desk so that critical and useful items are on the right.
Not only do I have that to contend with, but I also teach students with Special Needs. Some have physical problems, some intellectual, some are just easily emotional. Every school day is different because I am not just a teacher, I am a counselor, therapist, employment specialist, nutritionist, crisis manager,and comic relief.
In addition to that, when I get home after a long day of dealing with both the student’s needs and myself’s, I then deal with “33”.
“33” is an inside joke my wife and I use to describe our own children. It simply means that we have three sons that have three different types of ASD. ASD stands for Autism Spectrum Disorder, which is primarily a condition that hinders personal communication and social skills in certain individuals. It is called a spectrum simply because when you have met one person with autism, you have met one person with autism. No two are alike. While there may be similarities and generalities, such as lack of eye contact or social skills, the difficulties and the severity of each trait varies among individuals.
Our journey in the world of Autism started in 1998. That was the year my middle son, Jon was officially diagnosed. He is our most severe. Although Jon is 24 years old, Six-foot-two and closing in on three hundred pounds, he thinks and acts like a five-year-old.
A year after Jon started therapy, our pediatrician began noticing some red flags about our older son, Joey. Joey is two years older than Jon and was seven when he was diagnosed with Asperger’s Syndrome, a high functioning form of autism. Joey has a very high IQ but has limited social skills that make interaction with unfamiliar people extremely difficult.
Our third son, Joshua, was born in 2002. By 2004, we knew he was on the spectrum as well.
If that weren’t enough, my wife and I have delved deeper into this mysterious world. We started a Special Needs Sunday School at our church in order for our sons, and others, to experience the love of Jesus on their level. We worked with Jon, and a total of six other students, to get them confirmed. We realized parents with children with special needs needed a break, so we started up a “Buddy Break”, a monthly program where families can drop off their special needs children, as well as siblings, for an afternoon to enjoy a couple of hours “off duty”.
We do not do all this to achieve awards or acknowledgments. We don’t pat ourselves on the back and tell ourselves we did well. We did not plan for this life.
We do this for the same reason as those parents recently busted in the college admission scandal. We want the best for our kids! We want them to have the BEST quality of life that is available to them. We rejoice at there accomplishments and turn failure into teachable moments.
In addition, our sons have opened up worlds and have cultivated friendships beyond a parent’s wildest dreams. We have met so many people with big hearts and amazing generosity. We have had both personal and ministry needs met from complete strangers. Anonymous donations have shown up just when they were needed. Individuals and organizations joined with us when needed and shrank away when they were not.
Our sons’ Special needs cause conflicts and strife in our life as well. We complete weekly menus where four out of seven days never vary. Friday is Dominos Pizza, Saturday is Wendys, Sunday is McDonalds and Monday night is always chicken nuggets and fries at home. Tuesday through Thursday varies, but only tried and true recipes, such as spaghetti or tater tot bake dish are allowed. Anything new must be pre-taught and well thought out in advance before we proceed. We have to be aware when we do a new activity because expectations are set instantaneously. A couple of years ago, we went to Culvers on Memorial Day. That will now happen until we die! If we stop for gas with Jon, we need to get a donut, Saturday means a trip to the library to get four DVDs and four books.
Deviation from the expected will cause meltdowns! A lost toy will disrupt the house for hours while all present scour every possible location.
The struggles we face are challenging, but that just makes the rewards all that much sweeter. This week we were floored when Joey announced that he got a job! Joey went to Milwaukee School of Engineering and earned a degree in Mechanical Engineering in February 2016. Since graduating, he worked a 90-day internship at InPlace Machining, an 8-week temporary position at Key Technical and a 6-month contract position at Tapco Industries. All of those positions were found through the Department of Vocational Rehabilitation, an organization that helps people with disabilities find and maintain employment. Joey’s new job is at Steele Solutions. This is a permanent position with benefits. Joey found the job by himself, interviewed and accepted the offer with no outside help. As an added bonus, his new job is only six minutes away from our house, which is a big deal for us since he doesn’t drive yet.
Jon is attending a day program and has a one on one helper, Brad, that is becoming a part of our clan. Jon has a wicked sense of humor and loves teasing me! As I am writing this, Jon is at his desk in the living room, watching Wheel of Fortune videos while Power Rangers plays on the TV. He is rocking on the chair, trying to give my wife her glasses, since she has her eyes closed on the bed.
Joshua is taking a walk around the neighborhood. Of the three, he is the bravest when it comes to leaving the yard. Jon and Joey, when outside, stick to walking around the tree in the back yard. A circular dirt path has formed around that tree over the years.
This is as close as we get to a typical day. The calm can break any minute. Joshua can come in and tell us of an unknown cat in the yard that must be dealt with immediately. The internet could go down temporarily shutting down Netflix. We are constantly safeguarding against the next panic attack! We know its coming, but right now, we enjoy the quiet moments.
In those quiet moments, I thank God for my children and my life. I often ponder that the way I deal with the special needs of the people in my life is a reflection of how our heavenly Father deals with us. He knows what calms us, what agitates us and what throws us into a full-blown meltdown. Like me, he guides his children in life’s situations in order to achieve desired results. He steers us away from dangers that we are oblivious to and creates an environment where we are safe, comfortable and can thrive. He presents challenges that can be overcome with his guidance. He sees and provides for our needs, even if we cannot communicate them.
My wife and I have matching necklaces. On them are two items. The first is a silver puzzle piece. This represents autism, symbolizing that understanding a person with autism is like solving a puzzle and the cure for this condition is the missing piece. We also have a cross. We point out to people that we can’t deal with the first one without the second.
My two words no longer haunt or terrify me. They are a part of me and, to be honest, the best part. I love my job! I love my kids! I love my life!
Thank you Lord!
Prayer: Dear Heavenly Father! Thank you for everything you have given me! Please continue to grant us our special needs in order to navigate this world! In Jesus name, Amen!