Tag Archives: Asperger’s

When Compliments Hurt

Lorna and Craig watermarked

“You’ve done such a good job with him.”

I know it was meant as a compliment, but this statement from someone over a year ago has stuck with me for a variety of reasons.  As my baby turns 25 years-old I have to ask myself the question, have I?

Asperger’s is what it is. We’ve taken our son to all variety of therapies and he has gained genuine coping skills. He is a remarkable young man, confident and caring.  He advocates for himself. He understands his limits. A friend said something to him in humor.  It left him confused, so he asked, “Is that sarcasm?  I don’t do well with sarcasm.  I’m very literal.  Could you please explain what you meant?”  Way to go!

There are many things my son does, but one thing he doesn’t do is blend.  A parent recently confided in tears about attending a party with her son and being reminded again that he was different due to autism.  No one was mean. Nothing was wrong. It was just one of those times when the developmental disconnect reached up and slapped her in the face. That innocent comment, “You’ve done a good job with him,” did that to me. Differences had been noted and evaluated without anyone saying a word.

Honestly, it made me defensive. I wanted to ask, “How would you know? What leads you to believe it took extraordinary effort from all of us to get to where we are? How do you know the job we did was “good?”

I let it go. No harm was meant. It was a compliment! It just happened to be one that accidentally poked at a tender place that all special needs parents guard.  We had done a “good job.” Were we perfect parents? Of course not! Perfect is over-rated. We did our best.  A lot of the time we just winged it and prayed. Babies don’t come with owner’s manuals, especially not ours!

I’ve come to learn that blending is over-rated too. We aren’t meant to blend.  We are meant to stand out.  The psalmist writes,

“I praise you, for I am fearfully and wonderfully made. Wonderful are your works; that I know very well.” (Psalm 139:14)

How can a person who is fearfully and wonderfully made blend? Wonderful are God’s works in making each and every one of us as unique as fingerprints. Yes, as parents we work hard to equip our children. It is our most sacred privilege in this world. As they mature, let their differences shine. Embrace their strengths, reinforce where they need support.

When I pray for my son I hear the voice of my heavenly father saying, “You’ve done a good job with him.” To which I reply, “Thank you. You gave us great material to work with!”

Creating God, bless your holy name for making us all unique and yet all in your image. Free us from the expectations of this world and help us embrace instead the beauty in not blending. Amen

Eight Ways to Reduce Back to School Anxiety

Back to School

I’m sharing with my readers a guest blog I wrote for Ellen Stumbo.  You can read the original post here.

When I was a child, back to school came with lots of excitement and the good kind of anticipation. For my son on the autism spectrum, it was a very different experience.   Early on, we didn’t have anything close to a smooth transition when the school doors flung wide, welcoming all the little people who had become somewhat bigger people over the summer. As the first few years got off to bumpy starts, I found my son who is on the autism spectrum grew anxious about the start of the school year. I started to worry too. Would my son have a teacher who was a good fit for his needs?  Would he be able to cope with the social strain? Would he handle all the new material he needed to learn? Would he be safe from bullies? Would he make just one friend that year?

Dear God, is it asking too much for the answer to all of those questions to be “yes?”

For both of us, the sense of anxiety about back to school had much to do with the unknown. What happened to the “fun” part of back-to-school that I had known?  I was determined to help him have some happy memories by making what felt unknown become familiar instead.  Here are a few strategies that worked well for my family:

  • Brush up on academic skills. Math skills were always a challenge and hard-won gains eroded quickly over the summer. We found a math tutor who did a two-week intensive, meeting one-on-one an hour a day.
  • Review lists of back to school supplies with your child’s therapists. Check for alternate suggestions that best suit your child’s needs and motor skill abilities. Also, schedule ongoing after school therapy appointments. Therapist’s schedules fill quickly in those coveted afterschool hours. Booking early will help reserve the time slot that best fits the rhythm of your family and minimize disruption.
  • Make a “First Day Plan.” Navigating crowded hallways can be overwhelming to children with sensory issues, especially if he or she already has anxiety about a new routine. Introduce your child to their “go to” people, such as the school nurse, cafeteria monitor, and so forth. We used to arrange a time before school began, apart from the hectic “meet your teacher” night, and find the route to classroom, library, cafeteria, nurse’s office, and restrooms.
  • Avoid unnecessary embarrassment by having a spare change of clothes and underwear tucked away at school, just in case.
  • Help your child connect with other children he or she already knows who will be in the classroom. A familiar face on the first day of school can help alleviate anxiety.
  • Get in the groove ahead of time. Adjust bedtime and waking time to match the back-to-school schedule during the week before school. Experiment with lunch. The first day goes so much better if a picky eater is willing to eat what is packed in their lunchbox. What they ate happily a few months ago may suddenly be less appealing. Try doing a full dress rehearsal of getting ready for the first day and keep it fun rather than rushed.
  • Plan to something simple, but special to your child after the first day. It may take a few weeks to get into a settled routine and that is alright. Celebrate even small victories along the way.
  • Pray for your child each day and give over to God all that is outside of your control.

These are a few ways that my family made back-to-school fun again.  I’d love to hear what works for your family.

Rev Doc Lorna

Photo “Back to School” by Nuttakit at FreeDigitalPhotos.net

Just the Right Teacher

Back to School

We have gifts that differ according to the grace given to us: prophecy, in proportion to faith; ministry, in ministering; the teacher, in teaching … (Romans 12:6-7 NRS)

Meet-the-teacher night is always exciting, nerve-wracking, and hope-filled. Thinking back to when my son was young, at the start of a new school year, I would get anxious butterflies thinking about whether or not a teacher would “get” my son.  His behaviors could be challenging. He took up a lot of extra time due to his learning differences.  I would try to fill the gap a bit for his teachers each year by taking things off their plate where I could.  I figured teaching my son ought to come with some perks. I volunteered to help in the workroom, moving my teacher’s requests to the top the pile and doing them first. Every month I’d leave a small appreciation gift in their mailbox just to let them know how much it meant to me that they were helping my son learn despite his challenges.  A small packet of home-baked cookies, a giant chocolate bar, a gift card to a coffee shop or movie theater were just simple ways of saying thanks. My gifts were so small in comparison to the gifts they gave to Craig.

Teaching children is not a gift I have.  You know how some folks can walk into a room, snap the lights off and on and everyone gets quiet and pays attention?  When I try that I have five kids racing to the light switch, “Let me do it!” Math facts? Forget it! Oh I know them.  I just can’t teach them without someone ending up in tears. Often it’s me! Teaching truly is a gift and some have it and some don’t.  Since I don’t, I really appreciate those who do.

One of the greatest gifts I ever received came from my son’s helping teacher in first grade.  She had a great heart for special needs and could see past diagnosis to my son as a child of God, loving what she saw there. Toward the end of first grade we were talking after school one day when I picked up Craig. She was hoping for a child of her own, which was not coming as easily as it does for some.  She told me that she wished she had a boy just like mine.  I commented something about raising a boy is a lot of fun.  She said, “No. You aren’t hearing me.” Choking back tears, “I want a boy exactly like him. He’s amazing!” It was a healing balm for a hurting mother’s heart to know this woman who spent all day every day with my child was undaunted by behaviors and learning differences. Of all the kids she knew and helped she wanted one just like mine. In a way, her acceptance helped me with my acceptance.  I always accepted my child, but autism? It takes a while to make peace with that.  Having just the right teacher taught me a thing or two.

Prayer: Teaching God, We thank you for those who have the gift of teaching. They bless our families in powerful ways. Each child has a teacher who can unlock their abilities.  We pray your blessings on them as they prepare for a new school year. Amen.

Photo: Back to School by nuttakit from FreeDigitalPhotos.net

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.”

Fathers: The Unsung Heroes

Now the birth of Jesus the Messiah took place in this way. When his mother Mary had been engaged to Joseph, but before they lived together, she was found to be with child from the Holy Spirit. Her husband Joseph, being a righteous man and unwilling to expose her to public disgrace, planned to dismiss her quietly. But just when he had resolved to do this, an angel of the Lord appeared to him in a dream and said, “Joseph, son of David, do not be afraid to take Mary as your wife, for the child conceived in her is from the Holy Spirit. She will bear a son, and you are to name him Jesus, for he will save his people from their sins.” All this took place to fulfill what had been spoken by the Lord through the prophet: “Look, the virgin shall conceive and bear a son, and they shall name him Emmanuel,” which means, “God is with us.” When Joseph awoke from sleep, he did as the angel of the Lord commanded him; (Matthew 1:18-24 NRSV)

It’s hard to find much in the Bible about Joseph, Jesus’ earthly father.  He’s sort of the unsung hero, missing entirely from Mark, mentioned in passing twice in John and only a bit more often in Luke.  His star shines the brightest in Matthew with the story of his dream about Mary’s pregnancy, and later a story about another dream to flee to Egypt for the safety of his family. I’ve heard it said that Joseph could be missing from a nativity set entirely and it would be just fine.  You have to have Jesus. You have to have Mary. But Joseph… I think it must have been hard to be Jesus’ earthly father. Where does a father fit in with a child like that?

I see parallels with many special needs fathers I know.  Where does the father fit? I think they are often the unsung heroes in the midst of special needs.  A friend of mine who is an occupational therapist says he encounters fathers at school IEPs and the dads are often omitted from the conversation.  He started wondering what the dads had to say and began a gathering for special needs dads. Turns out they have plenty to say, but the system the way it stands does not give them a voice in the process. There is a strong bias toward the mom.  I know an amazing stay at home dad who has four children, one of whom has a history of extreme health issues as well as autism. He is the one scheduling therapies, doing medical interventions as needed and doing the day to day running of the house. Yet, in the special needs world, he also wonders where the father fits. When trying to get medical information from a nurse he was told the nurse was only willing to talk to his wife. That has happened many times. While trying to attend play groups with his children he is constantly asked, “Are you babysitting today?” Again, where does the father fit?

Looking back at my early journey with our son with Asperger’s, I am so grateful for what an amazing father my husband was, and is still, to our son.  We brought different skills to the table.  When I decided to leave work in order to meet Craig’s needs, I was the one running the after school therapy schedule and helping with homework.  I was wiped out by the end of the day, especially in the summer months.  Mark would get home, offer a perky toot of the car horn from the driveway signaling Craig to come steer the car into the garage from his father’s lap.  After dinner they were off to the community pool, where Mark was the “cool dad”, happily launching child after child into a barrage of mid-pool cannonballs.  And let us not forget the super-soaker wars the summers of the early 2000s. Epic! He’d had a long day too, but he craved time with Craig. I brought structure, he brought fun. I prepared the meals, he provided a paycheck to pay for them. When I thought there is no way to get this child to go to sleep, he had the magic formula that worked every time.

Mark is a great father, but not one who wants a fuss made about it.  For Mother’s Day I am typically combing reviews for the latest place for brunch and making reservations weeks in advance.  I can easily rattle off a short list of items I might enjoy as a gift if he asks.  For Father’s Day, my husband prefers ribs at Chili’s. Finding the “just right” gift?  That’s a challenge!  Of course, he has no list of suggestion, even when threatened with receiving a shirt.  Father’s Day is very quiet and simple, per his preferences.

Maybe Joseph set the mold by parenting without accolades, yet offering loving dedication to mother and child, fierce protection of family and great faith.  Perhaps men like that don’t want an over-the-top celebration once a year. It’s not their style.  Perhaps regular appreciation to match their tireless dedication is the key to celebrating these unsung heroes who fit into our lives and hearts beautifully.

Prayer: Loving God, I thank you for fathers who lead by example, love without measure, and do their best to be the fathers you have called them to be. Amen.

The Greatest of These is Love

When my son was an infant we did not live near extended family.  They were all in California, with two outliers in Oregon.  We lived in Alaska, having been whisked there five years prior by my husband’s company the day after we said, “I do!” With Craig being the only grandchild on one side of the family, and only one of two on the other side, we received requests to provide many videos of our whopping five-pound guy.  We then received complaints that they were a bit dull and the baby didn’t do anything.  It kind of made me wonder how they had never noticed when my husband and I were babies that we didn’t do anything either.  Perhaps the memory had faded with time.  Nevertheless, we kept up the videos.  We left off the long crying spells, the colic, and the inability to be comforted.  We left off the anxiety as milestones came along just a bit later than expected. Not enough to cause complete alarm, but just enough to make you go, “Hmmmm.”

This past Thanksgiving I visited my mother and she surprised me with a DVD that condensed all of those videos sent over the early years of Craig’s life. Our family of three settled in around the fireplace to share those memories recorded decades earlier and long forgotten. First baths, first smiles, cuddles in the rocking chair gave way eventually to tottering steps holding his daddy’s index fingers like handlebars. Watching his first haircut, I am amazed that Craig still has both of his ears after seeing him whip his head around trying to see what I was doing with those scissors.  I especially enjoyed the clips of me chasing him through the house, complete with Mark’s camera commentary and Craig’s shrieks of laughter encouraging me to ever higher levels of ridiculousness.  Parents will make complete fools of themselves for their children!  I collapsed on the couch, telling Mark, “I think it’s time to stop.  He seems tired.”  To which he replied, “I think mommy is the one who seems tired!”  He was right, and has video evidence to prove it!

I think that is what I recall most from those days, being tired, being a busy working mom, being a bit anxious about Craig’s development.  As a first time parent I had no point of reference.  Every child cries and cannot be comforted, every child can be picky about food, every child can be hard to put to bed, but … As years went on diagnoses came. First, ADHD. Then OCD. Then dysgraphia. Then anxiety. Then Tourette’s. Then Asperger’s. My focus became therapy and medication and behavior plans. Well, my focus was Craig, but also a whole lot of new things that became part of the world of helping Craig to be the best Craig he could be.

Somehow, in the midst of the intervening years those are the memories that crowd to the front. Toss in some vivid memories of “proud moments in parenting” when I was not as patient as I should have been and I realize I forgot something very important at the heart of it all.  I forgot about how truly, deeply, madly I love that baby boy who has grown into a young man of whom I am so proud.

Of course, I know I love my child.  He is part of who I am, even as he is separate and autonomous.  Yet, those videos brought home for me the underlying purpose of parenting. Deep love. It is so much a part of my everyday life that somehow deep love faded into the background of daily recognition.  In the shrieks and giggles and racing legs clad in fleece-footed jammies, I glimpsed it.  I even glimpsed it in those “boring” videos of us sleeping on the couch and rocking in the chair.  I think that is why we recorded so much of those times.  It wasn’t that they were exciting to watch, but that they were steeped in a new found deep love and wonder for the tiny person who was, and is, the biggest part of our lives.

The apostle Paul wrote to the church in Corinth at a time when they had forgotten a bit about who they were and why they were a church, a gathering of people representing Christ to the world.  He wrote for many chapters offering guidance, suggestions, and the occasion admonishment.  Finally, in chapter thirteen he spelled it out plainly. The Christian walk is all about love.  He reminded them that love is patient, love is kind, love is not envious or boastful or arrogant or rude.  He concluded that chapter, “And now faith, hope, and love abide, these three; and the greatest of these is love.” (1 Cor 13:13 NRS).

Faith, hope and love. Those are the definitive guides to parenting. Faith in God for guidance and direction as we shepherd our children through life, raising them up to their potential, whatever that may be.  Hope for a future that we cannot see, one that can be wrapped with anxiety and worry if we allow ourselves to be isolated from hope. Love, the greatest of these, prompts us to sleep on the floor next to a crib, go one more round with the insurance provider to advocate for our child’s needs, or simply make funny sounds to see a little face light up with joy. Of course we do those things and many more! We are made in the image of God and God’s character is defined by love for all people and all of creation. That deep love we feel for our child is but a dim reflection of the love that God feels for us, for our children, and for our families, whatever size and shape they may be.  God’s love is always there, even when we forget to notice. I wonder.  When we get to heaven will God show us a shaky home video of our lives, reminding us of all the times and all of the ways that we were loved by God as we grew as Christians and reached up to our potential as followers of Christ?

Faith, hope and love.  We need all three as parents; and the greatest of these is love.