Category Archives: Autism

Pray With Me, Please

Autism, , , , ,

praying-hands-by-unsplash-com

Hear my prayer, O LORD; give ear to my supplications in your faithfulness; answer me in your righteousness. (Psalm 143:1 NRS)

Yesterday my son started an internship.  A recent graduate in a slow job market, we were all very excited when he got a ten-week opportunity for a job in his major. Knowing well Houston pre-dawn gridlock, I suggested he leave a bit before 6am.  I pulled on my running shoes at 5:45 planning to have a few moments together before he left.

I found my husband alone in the kitchen reading the paper, “Where’s Craig?”

“He left a while ago.”

My heart sank. “He left?!”

“He woke up early and wanted to get a jump on the traffic. What’s wrong?”

“It’s okay. I just wanted to pray with him before his first day.”

Disappointed, I headed out for five miles. Well, I could pray FOR him even if I couldn’t pray WITH him.  While dodging bats hunting mosquitos by streetlight I prayed about his commute, about his first day nerves, about his co-workers. As a bat swooped a bit close for my liking I also prayed about the various critters he would encounter on his day of environmental field work. I prayed for him throughout the miles, but somehow it just wasn’t the same as praying with him.

We’d had a tradition back in elementary school and beyond that we would pray together each day as he left for school. Maybe it was about a test, or a busy day, or any of the thousand things important to him. It was just part of the rhythm of the morning. So much so that when I started seminary many years ago he came running down the stairs as I was leaving, “Mom! You can’t leave for school until we pray!”

That connection is the biggest difference between “praying for” and “praying with.” God is faithful and hears our prayers either way. Still, when we pray together it forms us, it weaves into the fabric of our relationships. It’s a blessing to hear aloud the prayers that others offer on our behalf. It shapes our own prayers when we are not even sure what we should be praying for. It reminds us again that we are not alone.

He got home in the late afternoon tired and excited, eager to share with me everything he’d done that day.

“I’m so glad it all went well! I prayed for you today.”

“I know, Mom. I know.”

Faithful God, Our prayers are wishes of our souls that we whisper to you. Help us to teach our children how to nurture that inner voice that longs to be heard by you. Amen

Rev Doc Lorna

Image Praying Hands courtesy of unsplash.com via Pexels

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Twelve Tips for Special Needs and the Long, Long Summer

Autism, Special Needs Parenting, , , , , , , , , ,

“Blank Calendar Shows Plan Appointment Schedule Or Event” by Stuart Miles from FreeDigitalPhotos.net

 

You have fixed all the bounds of the earth; you made summer and winter. (Psalms 74:17 NRS)

I told a lie. I didn’t mean to, but it just happened. I suppose I wanted to fit in with the other moms. Peer pressure is a powerful force, even for parents.

I was picking my son up from school toward the end of the year in second grade.  He walked home with me each day.  The school bus was too frustrating. The carpool line was long and caused anxiety as he waited to see my car.  So day after day I sweated in the late afternoon Texas heat with a handful of other moms outside the second grade hallway.

One mom gushed about her upcoming summer. “I can’t wait for school to get out. We’ve got swim team coming up. Then a trip to see grandparents. Then the kids are heading to my sister’s with their cousins so my husband and I can get away. After that we have vacation Bible school and then I’m sending them off to a week of camp for the first time.  We are going to try to fit in a trip to Disney if we can, but our summer is so packed it may have to wait until next year.”

Another piped up, “Same here.  I think we signed up for every single activity at the YMCA. Family is coming for a visit. It’s just crazy-busy all summer long.”

That’s when I lied. “Us too!” The second part wasn’t a lie, “It will be a relief when summer is over.”

All I could think of was the painfully blank calendar of non-existent summer activities.  Play dates? Kind of hard when your child has no friends.  Swim team? Ha! The noise, the chaos, that blaring horn and shrill whistle – not for my son on the autism spectrum. Vacation Bible school? I tried that once and, honestly, there were parents in that program who stopped speaking to me because I dared to enroll my son after the lead pastor encouraged me to do so. No way was I trying that again! The team activities at the YMCA? Those were a real challenge and more frustrating than fun to my son. He could have a full-blown meltdown playing BINGO. Siblings extending invitations to give us respite? Nope. We did have a couple of weeks planned to go visit grandparents, but two weeks out of twelve is a drop in the bucket.

This magical and marvelous summer the other moms described was not my world, though I desperately wished that it could be. So I lied and said, “Us too!” and set about erasing that lie by finding things to fill the days.

Here are a few strategies that worked for me:

  • Support groups. Other parents are likely to have kids in need of friends too. Ours was not the only family staring down the barrel of a long and boring summer.
  • “Special needs friendly” events. These were non-existent back when my son was young, but are becoming more and more popular. Check with local children museums, movie theaters, sports stadiums and performing arts venues.  For example, the Houston Ballet Company recently offered their first autism friendly performance, complete with interaction between performers and children afterwards.
  • Congregations with special needs ministries. Faith communities are much more aware and inclusive in summer camp and vacation Bible school. Find a program that fits your family and talk to the staff ahead of time so that they are prepared with volunteers who match the needs of your child. If budget is tight, volunteer your own time to help defray cost.
  • Summer camp for special needs children. There are more and more opportunities for children with special needs to experience summer camp. Some are child specific and some accommodate the whole family.  These often fill early so research registration dates and mark them on your calendar.
  • Check the calendar at local disability friendly non-profits. For example, in the Houston area, Family to Family Network and Easter Seals offer or have information about a variety activities and respite care. There is also Mikey’s Guide, a local publication to a broad variety of local disability friendly services and events.
  • Keep a routine. For many of our kids, structure is key. Set a routine for meals, errands, play time, family chores. Routine helps remove boredom.
  • Focus on therapy and acquiring new skills. Fitting in therapies during the school year can be a real challenge. Take advantage of available time to focus on areas for growth. Consider finding a tutor for challenging subjects to help keep your child from losing hard-won skills in math and reading.
  • Enjoy a less hectic pace for a while. While we live in a culture that glorifies “busy,” it is okay to step off the merry-go-round and enjoy a pace that is slower than the world around you.
  • Explore the outdoors. Children are inside for hours each day at school. Take advantage of summer as a time to get outside and explore parks, beaches, and walking trails. State and local parks in your area may have summer programs, such as guided trail tours, that suit a child’s interest and focus. If mobility is a challenge consider a tag along trailer for a bike. Check your own yard for bird nests and enjoy watching the new family grow.
  • Check out programs at the local library. Libraries are a treasure trove of child friendly activities and resources. The best part? They are free!
  • Water is wonderful in the summer heat. If the community pool is overwhelming, go at off times. No pool in your area? Create your own backyard water fun with sprinklers or an inexpensive wading pool.
  • Remember self-care. Parenting becomes 24/7 when children are home from school. With high needs children this can be especially tiring to the caregiver. Tag team with your spouse or other adult when you need a break. Schedule a night out as often as you can in order to nurture your most important relationships. Take time to do things you enjoy.

I learned that filling the summer isn’t about keeping up with what everyone else is doing.  Rather, it is about finding the pace and activities that best suits my family and flourishing there.

God of all seasons, Let there be renewal of spirit and foundations for friendships that last for all. May the bounty growing in the fields of summer also grow within the hearts and minds of nurturing communities of acceptance. Amen

Rev Doc Lorna

“Blank Calendar Shows Plan Appointment Schedule Or Event” by Stuart Miles from FreeDigitalPhotos.net

Put on Some Red Lipstick and Face the World

Autism, Special Needs Parenting, Uncategorized, , , , , , , ,

Candle-flame-and-reflection

Waiting was never my strong suit as a child. Brightly wrapped packages appeared under the Christmas tree sporadically throughout December. I would flop on the floor by the tree each morning. Shaking the packages, I would ask my Mom, “What did Santa bring?” She always replied with a smile, “Time will tell.”

Nothing makes time go more slowly than when you are waiting for something with great anticipation.

December may feel like the season of hurry, but it is meant to be the season of waiting and anticipation. Advent celebrates the time of waiting for the Christ child. Waiting with the keen sense of urgent anticipation like I had as a child, yearning for all of the answers to be revealed.

I thought I had outgrown that keen sense of yearning, but then I became a mother of a child on the autism spectrum. I found a whole different level of yearning for all of the answers to be revealed as I contemplated an unknown future.  I experience that daily with the parents in my support groups. “When will he …?” “How can I help her …?” “What if they…?” We yearn for answers to calm our fears. The unknown is so much more frightening than the known. Just give it a name, please.

How are we meant to wait? We are meant to wait with hope.  The Apostle Paul wrote the Romans, “For in hope we were saved. Now hope that is seen is not hope. For who hopes for what is seen? But if we hope for what we do not see, we wait for it with patience.” (Romans 8:24-25 NRS)

Long with hope and wait with patience. I tell that to my inner child who still eagerly shakes the metaphorical package and asks, “Why can’t you just tell me now?” At times Paul’s advice is easier said than done.

Today as I collected prayer concerns from parents after a group meeting one mom shared an update.  We’d been praying for her son to conquer four words. After many weeks her therapist offered a possible new diagnosis, apraxia. A real kick in the gut. We all shared her tears and felt her sense of anxiety about an unknown future.

Ultimately, it was her Mom who gave the best advice of all long distance from the UK. How can a mother maintain hope and wait with patience? “Put on some red lipstick and go face the world!”

There are days that are tough, days with news that takes our breath away, days for Kleenex after Kleenex. But all of those days can be defeated by hope. One of my favorite hymns that celebrates the birth of Christ praises what God has done, “The hopes and fears of all the years are met in thee tonight.” There is hope in Christ in all things, in life, and in death, and even in apraxia. And so while I wait, longing with hope, I am digging through my desk drawer looking for that red lipstick.

God of Hope, thank you for the gift of Christ that fills us with hope. Rekindle the true spirit of the season to help us calm that inner voice of fear and anxiety and instead wait with patience for the glorious future you will one day reveal. Amen

Rev Doc Lorna

Image Candle and Flame Reflection by Richard W.M. Jones (Self-photographed) [Public domain], via Wikimedia Commons

Rhythms of Grace

Autism, Special Needs Parenting, , , , ,

Rhythms of Grace

When a mom came up to me after worship with tears in her eyes, my first reaction was, “Oh no! What happened?” Far too often I hear stories of worship failures for kids with special needs, but this was different.  We were at Rhythms of Grace, a worship service for families with special needs.  I expected that day to be a big success for everyone and I was not disappointed.

“My son just took Communion for the first time! I never felt I could take him before, but he did it. I’m so proud of him!”

Wow! The tangible presence of God’s grace in the elements of bread and wine with no barriers or road blocks. What a gift!

Celebrating First Communion

Mabel 2 (1)

Rhythms of Grace is an inclusive service that is the shared vision of Lisa Puccio, Coordinator for Special Needs Worship and Rector Jimmy Grace. The two launched the service in November of 2010 at Christ Cathedral Episcopal Church with the vision that it would move among four churches on alternating Sundays. As partner churches left over time, the service was simply held monthly. With a vision for a weekly service in one location, when Rector Jimmy Grace was appointed to St. Andrew’s Episcopal Church in The Heights in Houston, that vision became a reality. With a strategic mission grant from the archdiocese and enthusiastic support by the local congregation, Lisa made the move to St. Andrew’s as well and the Rhythms of Grace launched weekly on February 1, 2015.

I enjoyed attending on a Sunday afternoon with parents and children from a support group that I lead. Numbers vary from ten up into the forties, with a strong volunteer base to help direct the energy of participants. As worship began with music and story time, one boy got up and pounded on the stair rail. Another felt overwhelmed and moved to the back of the room wearing his ear defenders to reduce sensory input, another got the giggles and scooted in spiraling circles in the middle of the floor among the other worshipers.  No one was bothered by behavior. No one was shushed.  We’d all been there. There was space for all of that energy without sideways glances. How refreshing!

The service flowed from our time gathered in a circle on the floor to a variety of activity stations set up around the room. Painting, coloring, sorting were among several activities that children could choose, selecting activities that matched their strengths and interests.  Each activity tied to the scripture lesson of the day. At the end of the time of exploration we gathered again for music and Communion. Watching Rev. Jimmy Grace go around to each family one by one and offer Communion was a visible reminder that God’s grace is freely given and open to all. We do nothing to earn it, but rather we simply need to accept it.

Rhythms of grace 3

Rhythms of Grace is well-named, matching the worship style to the rhythms of the lives of the participants, all the while celebrating God’s unconditional love for all people. While a few participants are members of St. Andrew’s, this unique style of worship has brought in many people from outside the congregation. It has created an outreach opportunity for what is the most basic of gifts a congregation has to offer, a place to belong while experience God’s unconditional  love in connection with others.

If you would like to learn more about this unique service, visit their website here and get in touch with Lisa Puccio for more information.

Gracious God, thank you for the vision of Lisa and Rev. Grace for offering this unique worship opportunity. Continue to guide their vision for opening the church to families with unique circumstances so that all can be part of a nurturing and supporting community. Thank you for surprising gift of a first Communion that was uniquely times to your rhythm of grace. I pray that all families looking to know you and be part of a faith community find a home as full of blessing as St. Andrew’s. Amen

Rev Doc Lorna

When Compliments Hurt

Autism, Special Needs Parenting, , , , , ,

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

Autism, Special Needs Parenting, , , , , , , ,

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

Twelve Tips for Special Needs and the Long, Long Summer

Autism, Special Needs Parenting, , , , , , ,

“Blank Calendar Shows Plan Appointment Schedule Or Event” by Stuart Miles from FreeDigitalPhotos.net

I told a lie. I didn’t mean to, but it just happened. I suppose I wanted to fit in with the other moms. Peer pressure is a powerful force, even for parents.

I was picking my son up from school toward the end of the year in second grade.  He walked home with me each day.  The school bus was too frustrating. The carpool line was long and caused anxiety as he waited to see my car.  So day after day I sweated in the late afternoon Texas heat with a handful of other moms outside the second grade hallway.

One mom gushed about her upcoming summer. “I can’t wait for school to get out. We’ve got swim team coming up. Then a trip to see grandparents. Then the kids are heading to my sister’s with their cousins so my husband and I can get away. After that we have vacation Bible school and then I’m sending them off to a week of camp for the first time.  We are going to try to fit in a trip to Disney if we can, but our summer is so packed it may have to wait until next year.”

Another piped up, “Same here.  I think we signed up for every single activity at the YMCA. Family is coming for a visit. It’s just crazy-busy all summer long.”

That’s when I lied. “Us too!” The second part wasn’t a lie, “It will be a relief when summer is over.”

All I could think of was the painfully blank calendar of non-existent summer activities.  Play dates? Kind of hard when your child has no friends.  Swim team? Ha! The noise, the chaos, that blaring horn and shrill whistle – not for my son on the autism spectrum. Vacation Bible school? I tried that once and, honestly, there were parents in that program who stopped speaking to me because I dared to enroll my son after the lead pastor encouraged me to do so. No way was I trying that again! The team activities at the YMCA? Those were a real challenge and more frustrating than fun to my son. He could have a full-blown meltdown playing BINGO. Siblings extending invitations to give us respite? Nope. We did have a couple weeks planned to go visit grandparents, but two weeks out of twelve is a drop in the bucket.

This magical and marvelous summer the other moms described was not my world, though I desperately wished that it could be. So I lied and said, “Us too!” and set about erasing that lie by finding things to fill the days.

If you’ve reached the mid-pont of summer and have run out of activities, here are a few strategies that worked for me:

  • Support groups. Other parents are likely to have kids in need of friends too. Ours was not the only family staring down the barrel of a long and boring summer.
  • “Special needs friendly” events. These were non-existent back when my son was young, but are becoming more and more popular. Check with local children museums, movie theaters, sports stadiums and performing arts venues.  For example, the Houston Ballet Company recently offered their first autism friendly performance, complete with interaction between performers and children afterwards.
  • Congregations with special needs ministries. Faith communities are much more aware and inclusive in summer camp and vacation Bible school. Find a program that fits your family and talk to the staff ahead of time so that they are prepared with volunteers who match the needs of your child. If budget is tight, volunteer your own time to help defray cost.
  • Summer camp for special needs children. There are more and more opportunities for children with special needs to experience summer camp. Some are child specific and some accommodate the whole family.  These often fill early so research registration dates and mark them on your calendar.
  • Check the calendar at local disability friendly non-profits. For example, in the Houston area, Family to Family Network and Easter Seals offer or have information about a variety activities and respite care. There is also Mikey’s Guide, a local publication to a broad variety of local disability friendly services and events.
  • Keep a routine. For many of our kids, structure is key. Set a routine for meals, errands, play time, family chores. Routine helps remove boredom.
  • Focus on therapy and acquiring new skills. Fitting in therapies during the school year can be a real challenge. Take advantage of available time to focus on areas for growth. Consider finding a tutor for challenging subjects to help keep your child from losing hard-won skills in math and reading.
  • Enjoy a less hectic pace for a while. While we live in a culture that glorifies “busy,” it is okay to step off the merry-go-round and enjoy a pace that is slower than the world around you.
  • Explore the outdoors. Children are inside for hours each day at school. Take advantage of summer as a time to get outside and explore parks, beaches, and walking trails. State and local parks in your area may have summer programs, such as guided trail tours, that suit a child’s interest and focus. If mobility is a challenge consider a tagalong trailer for a bike. Check your own yard for bird nests and enjoy watching the new family grow.
  • Check out programs at the local library. Libraries are a treasure trove of child friendly activities and resources. The best part? They are free!
  • Water is wonderful in the summer heat. If the community pool is overwhelming, go at off times. No pool in your area? Create your own backyard water fun with sprinklers or an inexpensive wading pool.
  • Remember self-care. Parenting becomes 24/7 when children are home from school. With high needs children this can be especially tiring to the caregiver. Tag team with your spouse or other adult when you need a break. Schedule a night out as often as you can in order to nurture your most important relationships. Take time to do things you enjoy.

I learned that filling the summer isn’t about keeping up with what everyone else is doing.  Rather, it is about finding the pace and activities that best suits my family and flourishing there. I’d love to hear from parents other ideas for family fun.

You have fixed all the bounds of the earth; you made summer and winter. (Psalm 74:17 NRS)

Renewing God, Thank you or the change of pace over the summer. Help us find refreshment and renewal rather than boredom in the midst of the gift of time. Amen

Rev Doc Lorna

“Blank Calendar Shows Plan Appointment Schedule Or Event” by Stuart Miles from FreeDigitalPhotos.net

Cords That Cannot Be Broken

Autism, Special Needs Parenting, , , , , , ,

 Strand by TCJ2020 from FreeDigitalPhotos.net

“I tried to connect with another parent raising a child with special needs, but she compared her child to mine. She said I can’t understand what she goes through. My situation isn’t as challenging as hers because my child ‘just has …’.”

Q&A time after a presentation is always interesting, but this recent statement… Wow!  I spoke at a Mother’s retreat and this mom’s comment caught me by surprise in some ways, but also resonated in others.

I’ve led support groups for years and find parents connect on a variety of levels.  Though their journeys and diagnoses of special needs may be very different, parents have a variety of common experiences: grief and guilt, anxiety about the future, coping with school plans, and more. As parents bond and connect, they can see past the differences in diagnoses to their shared challenges in parenting.   Time and again I’ve heard parents marvel at how connected they feel despite the fact that the diagnosis within their families are so varied.

Yet I have also heard comments like the one the mom shared at the retreat.  My son is on the autism spectrum and when he was entering high school another parent of a child with autism told me that I didn’t know what it was like for her because my son was older then and didn’t have the same expression of autism as hers. True, on some levels. Though my son was not born “older,” one can never know the exact experience of another person.    There is a saying, “If you’ve met one person with autism, you have met one person with autism.” It is a spectrum with a variety of expressions as unique and individual as fingerprints.  But it doesn’t mean that the differences in the expression of that spectrum renders parents incapable of hearing each other’s stories and helping each other in the midst of hard times. If we limit ourselves to only connecting with parents on exactly the same path as our own, it is going to be a very small circle of understanding and support.

It is possible to care and connect even if our life circumstances are different.  We do that all of the time.  Recently we’ve experienced torrential rain in my hometown.  I’ve received phone calls, text messages, and social media connections from across the country from friends checking in to see if my family is okay.  I suppose I could respond by saying, “If you’ve not had multiple inches of rain in a short period of time day after day you can be no help to me.” The truth is that you don’t have to experience a flood of epic proportion in your home town to be able to understand that it is frightening, creating rising anxiety to match the rising waters.

Genuine empathy and compassion are not necessarily born of having lived the exact circumstance, rather they are born of caring and friendship. One of the healthiest things parents can do for themselves is to connect with others in mutually supportive relationships.  In the book of Ecclesiastes, the author writes poignantly of the importance of relationships.

And though one might prevail against another, two will withstand one.  A threefold cord is not quickly broken. Ecclesiastes 4:12 NRSV

Sure, we can stand against adversity and challenges on our own, but it is so much easier to share the journey. Community and support are a gift, even when they come from unexpected places.

Holy God, bind us together, Lord, bind us together with cords that cannot be broken. Bind us together, Lord, bind us together with love. Amen

Rev Doc Lorna

Prayer by Bob Gillman

Image “Strand” by TCJ2020 from FreeDigitalPhotos.net

When Every Day is Autism Awareness Day

Autism, Special Needs Parenting, , , , , , , ,

Autism Awareness Day

Is it already World Autism Awareness Day? The year just flew by, but then again it is autism awareness day everyday at my house. Last year my grand experiment in building awareness got me a little more than I bargained for…

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 and tulle. 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 groups 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.

 Lorna Bradley

A Bag of Leaves and 13.1 Miles: Piece of Cake!

Autism, Special Needs Parenting, Uncategorized, , , , , , ,

1024px-Leaf_rake_and_leaves

“Let us run with perseverance the race that is set before us.” (Hebrews 12:1 NRSV)

Leaves drop late here in Texas and raking under the red oak on my front lawn is a regular Saturday activity for me lately.  Recently my neighbor called to me from across the street as I worked, “Lorna, did you run that half marathon downtown today?”

Rake. Rake. Rake. “Yes.”

“And you are out here raking leaves?”

Rake. Rake. Rake. “Seems like as good a time as any.”

“Aren’t you tired?”

Rake. Rake. Rake. “Kind of, but it needs to be done.”

Shaking his head as he walks away, “I wish I could find that motivation.”

Running 13.1 miles and raking a bag of leaves isn’t hard.  Coping with autism induced emotional meltdowns in public, now that is hard.  Teaching handwriting to a child with dysgraphia, now that is hard. Getting wheelchairs in and out of stores, now that is hard. Facing a long summer without a single playdate or birthday invitation, now that is hard. Enduring the unwelcome stares of strangers, now that is hard.

As parents, of course we get tired.  Yet we find the motivation because it needs to be done.  In comparison, a bag of leaves and 13.1 miles is a piece of cake!

Enduring God, Give us strength when we are tired, motivation when we want to stop, and hope in you in all things. Amen

Photo: By David Goehring (Flickr: Fall Labors) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)%5D, via Wikimedia Commons