A Lenten Devotional

I hadn’t ever expected to make a submission to the devotional booklet. Not being particularly knowledgeable biblically, I’ve never felt very qualified.

But the theme for this Lenten season, “Gather Up the Fragments: A Sacred Journey From Brokenness to Wholeness” got me thinking about my own personal brokenness and my own journey.

Not many in the church would know us. Those that do are aware of our 6 year old son who “suffers” from autism. It’s been nearly 3 years since his diagnosis. Many times I have felt broken and lost in my efforts to help my son. I see how autism has “broken” the pieces of a young boy’s mind-a beautiful boy with a loving heart and vibrant spirit. A boy I know is so smart, but the fragments of his brain are unable to interlock; not allowing him to express all that he knows and feels inside. How my life as an individual has been impacted, how family struggles can make chips in a marriage, how one child’s disability impacts the life of a sibling.

But then I think, “Am I really “broken” after all? Or are all of these pieces part of a greater puzzle that has yet to be solved? A puzzle with a deeper connection to the rest of the world and to God?

In times of frustration I remind myself that “God’s gifts do not come wrapped in the same packaging.” Some gifts may have material worth, or be wrapped in bright packaging with big bows and curling ribbon. Others are wrapped more plainly and seem less extravagant. Yet all of God’s gifts are precious and sacred. I know Jacob is a gift from God and through God’s loving grace, I know Jacob has many gifts himself to give. Gifts such as these come largely in the form of life lessons.

The pieces of God’s puzzle for our lives may not complete a picture that I would have chosen for myself, but I hold strong in the faith that it is a picture that provides a greater purpose than I may be able to recognize.

So many people in our lives: family, friends, teachers, therapists, doctors, and members of this church have given graciously of themselves and have been God’s gift- or glue- that helps hold everything together.

Through the brokenness in each of our lives, I believe we are able to piece together something greater than our individual parts. Whether it be in bringing awareness and advocacy for a particular disability or illness, feeding the hungry, helping build a Habitat house, participating in a mission trip, or comforting someone in despair, we are helping to create that greater whole.

"It's OK!!"

Children in the autism spectrum are often overwhelmed by a variety of situations. Bright lights, loud noises, crowds of people, certain textures, etc can provide much distress for them. You may hear of this being referred to as "sensory integration dysfunction."

(To get a little "technical" for a moment), the site: http://www.sensoryint.com/faq.html provides a good explanation of what sensory integration is:

>>The senses work together. Each sense works with the others to form a composite picture of who we are physically, where we are, and what is going on around us. Sensory integration is the critical function of the brain that is responsible for producing this composite picture. It is the organization of sensory information for on-going use. For most of us, effective sensory integration occurs automatically, unconsciously, without effort. <<

But because sensory integration does NOT always come automatically for the autistic individual, their environment can become very overpowering. As hard as it is for most people, (myself included), to comprehend, it can be literally PAINFUL to them. Couple that with an autistic person's desire for sameness and routine...you can imagine how diffult certain situations can become.

While Jacob's issues with SID are fairly minimal as compared to other autistic children, there are some situations that have been a bit more challenging.

When he was much younger, he would cry out "Ahhhh DOOOO DOOOO DOOO DOOO" frantically over and over again when distressed or scared. In my efforts to calm and assure him, I would cuddle and stroke his back and say, "It's OK Jacob. It'll be alright."

As he's grown older, he still has his fears and still may become overwhelmed at times, but he is getting so much better at calming and reassuring himself. "DOOO DOOO DOOO" has now been replaced with a "It's Ok!! It's Ok!!", which he will repeat several times until he has convinced himself of it!

Grandma and Grandpa have taken Jacob to Cabela's on a couple of occasions. There is a big stuffed moose that used to send him into an absolute tailspin! He would start on his mantra, try to climb out of the shopping cart and would be very difficult for them to control. A few weeks ago Grandma and Grandpa had made another trip there with him and they were particularly cautious when passing by Mr. Moose.

Much to the amazement of Grandpa and Grandma, the first pass by Mr. Moose produced zero response from Jacob. "WOW!" my Mom later commented to me, "He's finally gotten over that moose!"

As they were leaving and approached the moose a second time, Jacob very nonchalantly stated, "It's OK." (Translate: "OH YEAH!! I'm supposed to be afraid of that moose! Nahhhh....it's ok!")

"I Ride A Horsey?

As I wrote in "It's OK!!", there are many things that may frighten or overwhelm Jacob. But there are a few of those same things that he can't help but love (or at least be intrigued by) at the same time.

The mall in our city has a carousel in the food court. Also in the food court is a children's play area with hard foam bridges, frogs, a tree, tent, etc for the kiddoes to climb on. For as long as that carousel has been there, Jacob has been mesmerized by it. If I try to encourage him to run and play on any of the play equipment, he will have none of it. He wants to sit on the bench nearest the carousel and watch in awe.

But at the same time the lights, the spinning, the music is overwhelming for him. But he just can't help himself. He loves that thing. It has taken many baby steps to get him to ride the carousel. I've said many "It's Ok's" and even made up a goofy song I call "Riding My Horsey". (I named it that because it is a one line song repeated overand over!) Yet still he will not actually RIDE the horsey! We have to sit in one of the spinners.

But get within 2 miles of that mall and all you will hear is, "I ride a horsey? I ride a ride a ride a horsey?" Chattered over and over souding just like an auctioneer.

The same goes for the horsey ride at our local Hy-Vee. From the moment we pull in the parking lot, it's all about "I ride a horsey?" until we leave. You could spend an hour grocery shopping and you'd hear it the whole time. (Except for when he breaks to gobble the free cookies the kids get at the bakery or requests for balloons from the floral shop!) But, if as you are walking out the door you try to see if maybe this time he REALLY DOES want to ride the horsey, and try to put him on it??? TOTAL MAYHEM ensues! Screaming, crying, kicking, and "All done, all done!!"

So we pretend to be oblivious to the stern-faced onlookers and head out to the car. And all the way there, and all the way home its: "I ride a horsey?"

Empathy

One of the common difficulties children with autism face is in regard to social interactions with others. It is therefore natural to assume that these kids would also lack the ability to empathize. Heck, many typically developed children (and sadly even adults!) are lacking in this area!

But Jacob has proven to me time and again that one musn't "assume" anything about the abilities and understandings of children within the autism spectrum!

Sometime in mid February, Joel was working and I was needing a much needed break from my motherly duties. I had big plans for an all-day scrapbooking/crop event with a dear friend. Grandma and Grandpa offered to watch the boys and had a fun filled day planned.

At the Crown Center there was a "Fairy Tale Castle" exhibit going on. It was a collection of interactive displays of nearly all of the popular children's fairy tales from the Little Red Hen, The Three Little Pigs, to Jack and the Beanstalk.

Connecting the exhibit of Sleeping Beauty and Rapunzel was a bridge. There was a little girl, maybe 2 or 3 years old, that was attempting to cross the bridge. But being young and timid, she was being run rough-shod over by some of the older children. Well my precious boy, tender-hearted that he is, went up to the girl, put his arm around her and helped her to cross the bridge!

When my parents retold this story tears filled my eyes and my heart melted! I can only guess, but I believe in his own way Jacob was relating to this little girl. He knows how it feels to not be able to do things others do. At some level he must be aware of what it feels like to have people breeze by you, not taking notice that you are there. But Jacob DID notice this little girl, and he was there to help.

A little lesson in empathy that we all could learn from!

It's a "man" thing....

I'll never understand what the obsession is within the male species with women and long hair, but it seems to have even taken hold of a boy with autism. That's proof enough for me that it's in the genes!

For as long as I can remember, Jacob has twirled my hair. It's especially comforting to him when he's getting sleepy. He'll start doing his "sucky mouth", tear out the pony tail holder from my hair and twist and twirl away. I sometimes joke that Jacob wouldn't love me anymore if I cut my hair short!

I've had people tell me, "Oh I love it when people play with my hair! That's so sweet!" Yeah well, sometimes it is sweet. But those times usually aren't at 2am when you'd do just about anything for one good night's sleep!

But it's not just MY hair he plays with. Any female, regardless of age, is fair game. While he does prefer brunettes, blondes will do in a pinch. Last year I went to his school for his Halloween party. There was an assembly and Jacob spent the entire time playing with the young classmate's hair who was sitting in front of him. I told him to stop a couple of times, but then the girl turned around and said, "It's ok...He can do it if he wants to!"

Jacob celebrated his 6th birthday on March 14. Grandma Bev decided to give Jacob a doll with the idea that maybe he'd twirl the doll's hair and leave mine alone. Well the jury is still out on that one. While he has picked up the doll a time or two for inspection, "Belle" is quickly tossed aside, and Jacob has snuggled up beside me and begins twirling away.

It is then that our 2 1/2 year old, Noah, grabs up Belle and serves her some tea!

It's Raining...It's Pouring!

It all started out as the usual bath time routine. Jacob was pouring water out of a little plastic watering can, that doubled as a sandbox toy. Anyone who is familiar with Jacob knows of his love of music. (It never ceases to amaze me how so many autistic children are positively influenced by music. Jacob can pick up on new things so much faster if it is accompanied by a catchy tune! As his mother I have been known to come up with several of my own originals; undoubtedly a genetic trait passed on by my mother!.)

So I began to sing. “It’s raining, it’s pouring, the old man is snoring….” Little did I know that this would immediately top the charts of Jacob’s favorite song list! He’s been singing it ever since. And as I think about it, I could record the progress in his development through his ability to sing more and more of the words independently and more succinctly.

Nearly every time he speaks with any family member on the phone, his conversation starter is to say, “Eees raining eess pouurrreee.” And if you don’t continue on with the next line, he’s sure to repeat it for you.

Not only does this song tell a sweet story about Jacob, but it also provides quite a bit of symbolism as to some of the emotions a parent of an autistic child may feel. Some days are bright and sunny and full of hope. Others are cloudy and raining. And of course there are those days that are downright POURING down around you and you wish that you could just hide under the covers all day.

But no matter the weather, being Jacob’s mom has been a blessing- the most beautiful and precious of gifts. It is also quite humbling. That God has chosen ME (of all people!) to love, nurture, guide, protect this special and unique boy!