Tag Archives: autism

Just One Friend Part 1

Calhan_Colorado_High_School_Cafeteria_by_David_Shankbone

Some friends play at friendship but a true friend sticks closer than one’s nearest kin. (Proverbs 18:24 NRSV)

Didn’t summer just start last week or the week before?  Yet there they are. Ads in the paper for back-to-school supplies. My Facebook feed is full of friends caught up in back-to-school preparations. Friends who are teachers are posting pics as they fit in one more vacation before the new school year.

As a special needs parent, back-to-school comes with an oddly mixed sensation of anxiety and hope. I am always hopeful for a new year and new possibilities.  It’s the “what if” gremlins that make me anxious. With a little experience I finally figured out the first day of school routine.  I pray my son out the door with a positive, “God’s got you, so you’ve got this!” and keep the anxiety part to myself as I sit by the phone and wait for the call from the school office.  Autism and the first day of school. The call was inevitable at my house. I learned just to go with it.

My biggest prayer for my son each year is to make one friend. Just one. One good friend will see you through anything. Barnabas traveled with Paul on long and dangerous journeys to share the gospel.  Moses had Aaron on his journey to and from Egypt. David had Jonathan through battles and political intrigue. Of course my dreams were more sedate. I simply prayed for a person to sit with my son in the cafeteria and maybe hangout to build Lego castles and help save the world in the latest video saga. 

Looking back over the years that prayer has been answered each year. Some of those kids my son connected with in elementary school are still friends after high school. Some are neuro-typical.  Others are not. In the long run those differences matter little between real friends. The truth is that sometimes friendships bloom out of the most unlikely connections if well-nurtured, though I did give Craig one piece of advice that really helped.  Look for the kid who is by himself at lunch and go join him.  I bet he would like to have just one friend too.

Check back tomorrow for my post with practical strategies for helping our kids make friends.

Prayer: Loving God, Watch over our children as they look for friends.  Create pathways for connections where they feel loved and accepted.  Amen.

Photo: “Calahan Colorado High School Cafeteria” by David Shankbone

Just Horsing Around

Steeplechase_(2018245)

If I had known the day was going to include a life or death, headlong, downhill race after my son, I would have worn different shoes.  In hindsight, I should have seen it coming.

We moved to Chicago from Alaska while my husband attended graduate school. Living on a tight, student’s budget, we were happy to find a family friendly event in the neighboring town of Naperville, an annual steeplechase.  It was a day in the country with horses jumping over fences (be still my heart!), gorgeous fall foliage, and a hillside picnic where our high-energy, high-rise dwelling three year old with ASD could enjoy the great outdoors and fire his afterburners. Perfect! Thinking it might be a fancy horse event, I wore casual slacks and flats.  That was mistake number one. Oh, I was dressed just like everyone else, but…

We parked in the freshly mown hayfield and climbed the hill to find the ideal place for Craig to run and play, spreading out our blanket with the perfect view of the finish line. Opening our picnic hamper, we settled in for the first race. Eight brush jumps, a beginner round taken at an easy pace.  Craig watched the horses jump the first few fences, bouncing away in my lap on his imaginary horsey, and shouted, “My turn!”

I thought he was joking.

That was mistake number two.

Back in the day in Alaska I rode horses and my husband would meet me at the barn with our son.  After I had finished my ride, we’d buckle on a helmet and Craig would sit in the saddle in front of me, kicking his tiny feet, “Go Alex, go!”  Each time he got to the barn, he’d see me jump a fence or two, call out, “my turn!” and he’d get a ride.

You know how kids with ASD are about routine?  Well, I hadn’t figure that out yet.

He jumped out of my lap and started running down the hill, “My turn!  My turn!”

I called after him that he couldn’t ride those horses, thinking he would stop. Ya, right. All I managed to do was let him get a head start.

That was mistake number three. Game on!

Mommy instincts finally kicked in.  He’s not stopping!  His tiny legs had remarkable turnover as he sprinted for the finish line.  “Craig! Stop! The horses are coming!”

“My turn!”

Dear God help me! No one else knew what was happening. The rest of the sparse crowd had their attention fixed on the finish line. I started running faster, flats slipping on the damp grass.  My husband, realizing the seriousness, was on his feet behind me.  There was no time to zigzag around the other picnicking guests.  I leapt entire families in hurdler form, screaming like a crazy woman, “Craig! Stop!”

“My turn!”

All dignity gone, feet skidding wildly, I finally managed to scoop up Craig about ten yards from the rail. Frankly, I was glad I didn’t fall on him and crush him.

Relieved. Scared. Embarrassed. Elated.

I tucked him under my arm like a wiggly football, full of giggles for his great adventure,  and started the long trudge back up the hill to scattered, polite applause, apologizing to far more people than I care to remember. I was embarrassed, they were amused.

I realized in that moment how deeply I loved my child.  I couldn’t think of logical consequences for a punishment, nor behavior plans. I doubt in that moment I even knew my own name, but I felt an overwhelming sense of love and knew nothing would keep me from chasing after him.

Perhaps that was for me a dim glimpse into the love that Paul writes of in his letter to the Romans.

For I am convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. (Romans 8:38-39 NRSV)

Absolutely nothing separates us from the love of God. God loves us in a deep and abiding sense. God, too, pursues us when we are headed the wrong way, flinging wide protective arms, even when we chose not to see them. When we finally turn to Him, He embraces us. “Welcome home, little one! I’m glad you’ve stopped horsing around.”

Photo by Jason Trommetter “Steeplechase” via Wikimedia Commons

Thank you Sandra Peoples for inviting me to guest blog today wiht this post at  specialneedsparenting.net.  If any parents out there are looking for a great book to use for parent support resources, check out Sandra’s book “Held.”

Easter: It’s All in the Seeking

For me, Easter is steeped in memories of my childhood. We’d pile in our two-toned Oldsmobile, nicknamed Gladys, driving two hours from my home in the Bay Area of California to my grandparent’s house in Sacramento. The eternal question was offered up regularly by me or my brother in the backseat, “Are we there yet?” Saturday was a blur of preparations, including boiling and dying eggs.  Finally, the big day arrived. Easter Sunday! I was eager to get up and see what the Easter bunny brought. “No candy until after church.” But then grandma would wink at me and, when my parents were out of sight, sneak me a small foil-covered chocolate egg.  She also regularly let me have ice cream for breakfast.  I loved visiting grandma! Then it was off to church, my tightly combed ponytail facilitating a smiling expression that belied my discomfort in the inevitably itchy Easter dress.  My reward for sitting quietly all through worship?  The Easter egg hunt afterwards in grandma’s backyard with all of the cousins! There were six of us so I learned to move fast and hunt low, being one of the younger and, therefore, shorter children.  In addition to tons of boiled eggs, plus plastic ones filled with chocolates, there was also one special egg that had a dollar in it, a big find for a preschooler in the mid-60’s!  Ready, set, GO!!!!  Mayhem ensued in a free-for-all, mad dash for those precious eggs. Afterwards, grandma gathered up the boiled eggs and made egg salad and deviled eggs out of them. We kept the candy. The one lucky recipient of the money egg was typically just a bit smug, snapping that crisp dollar bill under the disappointed noses of those less fortunate.

The Easter egg hunts for my son were much more sedate.  Being an only child with ASD and having no extended family living within 2,000 miles, our egg hunts were for a party of one. The community egg hunt was over-stimulating and that competitive scramble of hundreds of children guaranteed a meltdown.  At times I have felt guilty that his Easter memories were so different from mine. I suppose my concern was that I offered him something less. That guilt caused me to compensate with more eggs than one child needs, and inflation greatly blessed the contents of the money egg. What Craig taught me as he grew up is that what I offered wasn’t less, rather it was different. More important, it was just right for him. Looking back now, he says he loved knowing he didn’t have to rush. He could really enjoy the moment, knowing that the hunt was all for him and the one extra special egg was his reward if he just kept looking long enough.  We hid that one very well! He never wanted us to show him. He needed to find it for himself. For him, the joy of the hunt came in looking for something, even when what he was looking for wasn’t where expected it to be.

What Craig experienced, on a rather profound level, has much to do with what Easter is all about. After Jesus was crucified and laid in the tomb, on the third day the women came to attend his body. Except Jesus’ body wasn’t where they expected it to be. Thus began a Easter hunt of a much more important nature.

Then the angel spoke to the women. “Don’t be afraid!” he said. “I know you are looking for Jesus, who was crucified. He isn’t here! He is risen from the dead, just as he said would happen. Come, see where his body was lying. (Mat 28:5-6 NLT)

What Christ offers to us through the resurrection is a gift for everyone, but it is a gift claimed through the individual effort of seeking. It is not a gift another person can bestow upon me or you or anyone else. Rather, this gift only comes through seeking for ourselves, encountering Christ, and proclaiming him as Lord in a  one on one encounter. The joy of discovery in finding Christ magnifies that innocent joy of the childhood experience of Easter. It celebrates finding what we are seeking.

Sometimes as parents of children with special needs, what we are seeking is simply a practical answer to how we can be part of the Easter celebration. With Easter Sunday coming tomorrow, I understand how it is hard for some to be part of those large celebrations. Crowded sanctuaries, physical accessibility limitations, sensory and anxiety, issues all make high holy days especially challenging.  If you are looking for a way to be part of a worshiping community on Easter Sunday, here is a wonderful option available online. Front Door Online church specifically seeks to offer a worship experience geared to families with special needs.

http://drgrcevich.wordpress.com/2014/04/17/the-front-door-online-church-for-families-impacted-by-disabilities/

Happy Easter to all and may you find that which you seek.

What I Learned on World Autism Awareness Day

On Wednesday, April 2 2014, I joined in with celebrating World Autism Awareness Day. The tagline of the day was “Light it up blue!” and so I did.  I updated Facebook with a blue cover photo and profile pic, all promoting autism awareness. I also dressed in blue, celebrating the many people in my life impacted by autism, including my son.

Figuring out what to wear was a bit of a challenge.  I discovered at the last minute that I do not have much blue in my professional wardrobe, but one royal blue cardigan peeked out among a rack of long sleeves. Putting it on, I recalled something else I own that went perfectly with that royal blue sweater, a magnificent fascinator filled with feathers, tulle and a bow, all framed in a malleable brim. I bought it for a trip to the Kentucky Derby that never happened. Just the perfect thing to add a bit of whimsy to a day of celebration for friends whose lives could use to be celebrated publicly much more often. Upon arrival at the office, I clipped on the fascinator at the oh-so-perfect, jaunty angle (no small task that!), snapped a selfie, posted it and tagged my many friends whose lives are touched by ASD.

Originally, I meant to remove my hat after the selfie. I felt a bit self-conscious in the office.  I thought, “If I wear this hat, I’m going to get funny looks and have to explain it all day long.” Then again, isn’t that what an AWARENESS day is for? Creating awareness?  If I just wore blue, I reasoned no one would think that was out of the ordinary. But sporting a headful of feathers and tulle? That’s a whole other matter!

What started as my grand social experiment in creating awareness became something else entirely by the end of the day. At first, it was kind of novel. I encountered the anticipated funny looks and immediately explained to each person why I was wearing a hat. By the time I had done it, five times, ten times, the novelty faded.  It got to the point that I skipped over a few opportunities for explanation and just walked on by, accepting the funny looks and occasional humorous comment.  By noon I found myself almost hiding in my office, knowing that another trip down the hall would be another encounter.  It grew old getting odd stares.  I debated removing my hat. It would have been so easy to just take it off and be “normal.”

I wonder how often people with autism wish they could simply take it off. Wouldn’t it be nice not to get the quizzical looks for behavior that isn’t what others expect? Even just for a while? As a parent of a son with Asperger’s, I’ve felt those stares weighing on me and on my son, especially when he was younger. That repeated question from those who don’t understand, “Why can’t he just (fill in the blank – behave, be quiet, eat what everyone else is eating, etc.)? Well, the answer is he can’t, at least not on that day.  It’s not a choice.  Asperger’s, like other special needs, is not something that can be taken off. My hiding in the office and avoiding the break room reminded me of times when my son was young and I longed to take him to the playground, but knew that was not a place where he met with much success. I would gaze out my dining room window toward the playground. If there were other children and parents there, and it had been a challenging day, I knew we just couldn’t go that day.

In the parent support group that I lead, we’ve all experienced times when we get tired of receiving “the look” and choose to withdraw. It’s easier to be alone, or so we tell ourselves.  It is really isn’t. We are made for community. It reminds me of the story in the Gospel of John.  Jesus was walking through Samaritan territory and he stopped at a well in the middle of the day while it was hot and no one else was around.  Soon a woman came, one who chose to isolate herself from stares and whispers, coming to the well in the hot afternoon sun when others were at home. It was easier for her to be alone, too. But it really wasn’t. And Jesus knew it. By the end of her conversation with Jesus, she was restored to community. So eager was she to get back to her people, that she left her water jug by the well and ran all the way back to her village, inviting others to come and see Jesus for themselves. That is what Christ does for us. He restores us and calls us out of isolation and into community.  Yes, even us with lives touched by special needs.

This reminds me of the amazing story of a church that embraced Max and Emily Colson. Emily posted a blog that went viral sharing her experience of a cruel movie audience that heckled, jeered and mocked, driving Emily and her son Max out of the theater due to Max’s autism. Their church stood beside them and rented out an entire theater so that 500 people could attend Movie with Max.  Their church celebrated autism awareness, not with a splash of blue, but by embracing and including.

Our need for inclusion and understanding is part of the fabric of our beings of which we are wonderfully woven by God. Living into inclusion involves creating awareness in whatever way we can, whether at a movie theater with 500 of our closest friends, or wearing a silly hat to the office. When we stay engaged, even when it is hard, it is one more chance to shine the light of Christ for the ones in our lives who put the “awesome” in autism.

Autism Awareness Day