I have to admit that after 25 years, I still have trouble understanding God… but having children as gotten me a little bit closer to that goal.
Being a Dad has shown me the Father! I have three sons and all of them are on the autism spectrum. My oldest and youngest present with mild forms of the condition and function in the world reasonably well with support from his parents.
Jon, on the other hand, is my mystery!
Jon’s autism is the most severe. Jon is 25 years old and at 6’2” and 285 lbs, he will always be my largest “little boy.”
Jon has the tenacity and curiosity of a 5-year-old. He knows his routine and is a stickler for rules, procedures, and traditions! Every day of the week dictates an activity, food choice or destination. Saturdays afternoons are my favorite because it’s just him and me. I get home at about noon from volunteering at a food pantry to see Jon waiting patiently for me. I have to ask him where we are going, although I already know because he has it written on the calendar. Today, we are going to the library, then shopping at Meijer’s followed by lunch at Burger King. This has been every Saturday for the last 12 years, the only variant is the shopping destination.
We get in my car and he buckles his seatbelt. He will wait until I put the car in drive before he opens up “The Complete Tales of Winnie the Pooh” by A.A. Milne. Jon takes this book with him every time he rides in a car. Starting on page 1, Jon will turn pages one at a time at a fast pace, not reading. The library is about a mile away and the race is on! Jon tries to get to the end of the book before I can turn off the car at the library. If I beat him (which usually happens unless I hit all red lights), I must wait for him to finish before we can go in. After the last page, he will close the book, look at the back cover, then flip it back to the front cover starting position.
At the library, Jon gets 4 DVDs and 4 books. No more. No less. The DVD’s are usually 2 Power Rangers, 1 Sesame Street, and 1 Disney Movie. I could never figure out the books until just recently. After selecting his DVDs, Jon would hand them to me and proceed to a long shelf of children’s picture books. He seemed to select four at random but sometimes would put one back if another caught his eye. After all this time, I finally see his pattern. Jon selects a blue, red, yellow and green book!
After the library, we are back in the car but this time he ignores the Pooh book. If the weather is nice, he will put his hand out the window. I then will ask him what’s next and he will give me a one-word answer. Today it’s Meijer’s. It doesn’t really matter where we go, because Jon buys the same two things every week. Jon wants a Power Rangers toy and a DVD. Now, Jon gets SSI and, due to some weird regulations, he is not allowed to retain any money into the next month. Jon gives a portion to us for his living expenses, but the rest is for him to enjoy his life with.
Sometimes we have other items to pick up as well, so I will tell him what else we need to get. He is my walking shopping list. If I tell him we need an item, he will usually grab it off the shelf before I mention it again.
After our shopping trip, our next stop is Burger King. If you ask Jon what he wants he will rattle off the following: French Fries, Hamburger, Chicken Nuggets, Brown Soda, Ice, Cookie. The hamburger is always ketchup only, the nuggets are always required to have no sauce, and the brown soda is always a nice tall glass of Diet Coke.
We used to go inside but now we just go through the drive-thru because I want to be home in time for supper. Whenever we sit at the restaurant, Jon eats one thing with one tiny bite at a time. A single french fry could take up to 12 bites to devour, every bite punctuated by a dip into ketchup. And let’s not even get into how long it takes him to eat a single hamburger. (One thing to keep in mind whenever eating out with Jon – always bring something to read!)
I order for my other 2 sons and myself and then head home. Jon holds the drinks on his lap and the food sits in between us. He has learned that when I click my turn signal he has to grip the drink carrier a little tighter.
Jon has the playfulness and imagination of a 4-year-old. He likes to stay in his routines but is willing to try new things as long as we “coach” him in advance. When we do a new activity, we have to be careful about what we do before and after. We have to be careful because we will have to follow that routine in perpetuity! Church means McDonald’s. The library is Burger King. We went to Culver’s on Memorial Day a couple of years ago, so now that is tradition. Holidays are always held at the house of an extended family member, mornings always start with a bowl of his cereal of choice, and days are ended with a long bath after supper and a handful of waffles before bedtime.
In addition, Jon can be quite silly at times. He will be sitting on his computer or in his room and just start laughing! Big old belly laughs and guffaws that has tears rolling down his eyes! He also has a mischievous streak, like when he would grab my feet and pull me off the couch for no apparent reason. When I asked him why he did that, he just grinned and said “BAD KITTY!”
He also likes to light punch me in the stomach and say, “BULLY”
Jon “talking” is in the form of echolalia. This means that he repeats what he hears, usually phrases from TV and movies. Jon uses what we call “Game Show Language.” When he doesn’t want to leave a favorite activity, he’ll state “We’ll be right back!” If you ask him to do something he doesn’t want to do, you’ll get “You’ve all overbid!”. If he wants something he can’t have it’s “Jon’s crying!”
He also loves movie lines. We had a special needs talent show last month. Jon’s talent was that he could sing a song from any Disney Movie! People were shouting out titles and Jon would fire back with the chorus! He also does movie quotes, especially from Toy Story, Aladdin and the Lion King. He had me stifling a laugh in the church because we had just finished praying when he turned to me, looked me in the eye and announced with a straight face “I KILLED MUFASA!”
I remember the first time I heard his voice. I would call home during the day and touch base with Robin, my wife. At the end of the conversation, she would hold the phone up to Jon’s ear so I could tell him goodbye, then describe his reaction to me. One night I was out of town, so she held the phone to his ear and I said, “Goodnight Jon”. I was floored when I heard, “Goodnight Daddy”. He was 6 years old. I hung up the phone and cried! Jon stills calls me daddy to this day! I love that!
Jon has the heart of a 3-year-old. He knows when people around him are hurting. He will bring a tissue to a person he sees crying. One day, a woman was doing yard work a couple of houses down. It was a fairly warm day, so she just had on a bikini top. Jon brought her a shirt! Every Sunday he would plop down in our pew at church and give his Grandmother a kiss!
Jon has the temper of a 2-year-old. Jon is a big boy and can get quite upset when things do not go his way! We have learned over the years what will set him off like loud noises and babies crying. I have been pinched, slapped and bitten many times over the years. Things are relatively calm with him now due to the medicines he takes to keep him tame but we also keep a vigilant watch out for his warning signs like a high pitched voice or him biting his lower lip.
Jon has the amazement of a 1-year-old. He is constantly amazing me when I find out he can perform tasks that I didn’t think he could. From the day when he was 5 years old and was frantically hunting around the house for something. He was losing his temper and becoming quite agitated. We were constantly asking him but he couldn’t tell us. It was so frustrating until he grabbed a pen and paper from the kitchen table and wrote “Winnie The Pooh”. My wife and I were floored! We didn’t know he could read, let alone write! Jon is so smart!
Jon has the wonder of a newborn! When you first hold your child, you try to imagine where life is going to take them. Will they be smart or funny? Will they go on to invent a new fixture of life, or will they discover a new alien life form? There’s no way of knowing except to live their life alongside them – and Jon’s life has taken me along for the ride! I would not be a special education teacher if not for him. Over the last 20 years, I have reassured parents and encouraged my students with tales of Jon’s progress. My wife and I would not have started a Special Needs Sunday school or Confirmation, which has confirmed dozens of young Christians with Special Needs. We now help run a monthly respite program for children with Special Needs and their siblings, which benefits more than 25 families in our community. And it is all because of Jon.
Jon has also given me a glimpse, a small insight, of how God must look at me. Jon doesn’t know what we have sacrificed for him. He is unaware of how much planning is involved to give him the quality of life he is accustomed to having. His needs and wants are provided, without a thank you or an acknowledgment. But he is aware of how much we love him, and that love is returned in kind – in his own special way.
I think God sees me the same way I see Jon. He knows I need constant care and love, that I am totally dependent on him, but at the same time I want certain things done a certain way. I get upset when my routine is shaken. I get startled and lash out at loved ones when something rattles me. He watches out for me, holding my hand as we walk out into the street to cross the road.
Most importantly, God loves me. Not for my potential or what I do for him, which is nothing at all. He loves me simply because I am His son! And I still call him daddy!
Prayer: Dear Daddy, thank you for all the ways you look out for your kids even in ways totally unknown to us. I am your child with special needs and rejoice in the compassion and comfort that only you can provide. In Jesus name. Amen
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