Tag Archives: friends

From Desolation to Consolation

 

Bluebonnets by Vikki Yost

The last six months has introduced me to a whole other side of disability ministry. It all began with a phone call my mother received within 15 minutes of my arrival for Christmas vacation.  My son hurried down the hall, “Grandma needs you.”

Hands filled with items from my suitcase, I didn’t bother looking up. “Thanks, let her know I’ll be there in a few minutes.”

“You better go now.  She’s crying.”

Thus began the journey with what we now know to be terminal cancer and my time in desolation. It is all too familiar territory. Diagnosis can be devastating for the caregiver whether for a child or for a parent. There is a relief in knowing what it is, finally, even when the news is not good. And there is grief.  Lots of grief. That process muted my voice to the parents whom I try to support.

Dr. Jack Levinson spoke at a clergy breakfast I attended and offered the keys to unlock where I have been trapped. “When in desolation, remember consolation. When in consolation, remember desolation.” My ministry has been one of remembering desolation and offering hope to parents. A voice of experience saying, “Yes, I have been there too. You are going to be alright. More than alright. You can thrive right where you have planted.”

We all move between the spaces of desolation and consolation. Some call it peaks and valleys. How do we breathe, how do we function, whether in the middle, bottom or top?

The key is faith.  In the story of Job, we see a person caught in extreme desolation. He had lost everything, family, wealth, status, health. Even his friends abandoned him, save for a few. (Sound familiar?) His truest friends came and sat with him in the ashes, for a time in silence, sharing his pain. Once they spoke up they didn’t always have the most helpful things to say, but don’t we all fumble for the right words at times?  Their loyalty was a gift in the hardest of times. Job kept the faith despite his hardships and he came out on the other side stronger for it.

In a way, I think the experience of Job helps explain the bond between parents on the journey with special needs.  Our stories are all different, as unique as our children, yet we know at times a sense of desolation. Loss. Grief. But those are balanced with joy of new-found abilities, hope in a future not yet seen, and the peace that surpasses all understanding even in the midst of chaos. The way in which parents reach out to each other offering support and encouragement to one another pours back and forth that cup of consolation, filling in all of the cracks, mending and making us stronger.

When in desolation, remember consolation.

I received a four word text from a friend. I knew instantly that she, too, was in desolation. I immediately  called and shared a long, heart-felt conversation.  Why? As I read her message I told myself, “Remember consolation.” It turns out consolation makes the desolation not quite as bad.

I waited patiently for the LORD; he inclined to me and heard my cry. He drew me up from the desolate pit, out of the miry bog, and set my feet upon a rock, making my steps secure. He put a new song in my mouth, a song of praise to our God. (Psalm 40:1-3 NRS)

Consoling God, Like Job, we praise you in good times and in bad, for you are forever faithful. We thank you for those in our lives who remember consolation. Keep us mindful to return the favor. Amen

Rev Doc Lorna

Image “Bluebonnets” courtesy of Vikki Yost

Dr. Jack Levinson is William Joseph Ambrose Power Professor of Biblical Hebrew and Old Testament Interpretation at Perkins School of Theology and author of several books, including his most recent, 40 Days with the Holy Spirit.

Twelve Tips for Special Needs and the Long, Long Summer

“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

Special Needs Parent Appreciation!

green watercolor background

For the month August, Sandra Peoples and Carol Flory at Not Alone Ministry launched Special Needs Parent Appreciation Month. Plain moms and dads get a mere day to celebrate their talents as parents.  Special needs parents deserve an entire month!  It’s fitting that they chose “back-to-school” month, undoubtedly the most stressful month of the year for most special needs families.  If there is ever a time when we need a bit of extra appreciation, August is it! For all of those therapy appointments, for juggling a tight budget, for giving tirelessly to those who need it most, for the million ways in which you give and care – Well done!

Earlier this year a parent said to me, “I wish there were a devotion just for special needs parents. I read other devotions. I like them alright. I just wish I could find one that really resonates my experience.”  As a gift to special needs parents, Not Alone Ministry created a 30-day devotional eBook. They tackle hard topics like anger, guilt and fear, as well as the lighter fare of parenting, such as hope, friendship and grace. They invited a variety of disability writers to contribute, including me.  You can read more about the project here: http://bit.ly/1ECJEiU and you can download your copy of the devotion here: http://bit.ly/1My3eTT

On a personal note, many folks have been asking about an eBook version of Special Needs Parenting: From Coping to Thriving.  The eBook was released on Amazon on my son’s birthday, which feels perfectly fitting! You can find both the print and electronic versions here: http://amzn.to/1h0kSEy

Renewing God, for the parent who gives constantly and takes little for themselves, provide an opportunity for self-care.  For the parent who yearns to hear their child say thank you, help them feel that appreciation in ways that transcend words.  For the parent who worries maybe they are not enough, remind them we are all more than conquerors through Christ Jesus who strengthens us all. Let all that we do as parents be to your glory. Amen

Blessings!

Rev Doc Lorna

Just One Friend Part 2

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)

Everyone wants and needs relationships. We are hard-wired for it. One of the biggest hurts I have felt as a parent is wanting my child to feel accepted and connected to others. In the support groups I lead it is a common issue that resurfaces again and again. I talk to parents about nurturing the relationships they do have and they switch to talking about relationships their children don’t have. I have been mulling around an idea that has not really taken shape yet, but it goes something like this. Wouldn’t it be great if churches could host a “Just One Friend” night. Invite the special needs community and anyone else who is looking for friendships. Set up games and activities. Parents stay and help foster connections. This in’t a respite night. It’s a relationship building night. Kids build relationships with kids.  Parents build relationships with each other. The general premise is that folks are coming to have fun and meet new people that they may want to connect with after game night is over. That’s kind of a bare bones snap shot, but I think it could be a way churches could offer important relief from isolation, which is a big part of healing on the journey with special needs.

Here are a couple of practical strategies I used for nurturing friendships when my son was younger. I recognize that this is not a universal list for all the various differences amongst our children. Hopefully it will at least provide some fertile ground for other ideas to spring up as well:

  • Remind your child that everyone will be looking to meet new people. They are not alone in that feeling of being in a class with new people.
  • Have your child talk to kids who are friendly and suggest they ask them questions. Kids love to talk about what they did over the summer. Be an interested listener.
  • Have them look for others who look lonely and talk to them. My son can spot a kid on autism spectrum in heartbeat. Like matches with like sometimes.  They get him in a way others don’t.
  • Have them make friends with grownups at school. The cafeteria monitor can be a great ally in finding friends and avoiding bullying.
  • Dress like everyone else. This sounds basic, but it is amazing what an impact it can have if a child is “over-dressed” for school, especially boys. If they look like they came from a fashion shoot for children’s resort wear change their clothes!
  • If you feed them they will come. If Craig had a friend over in elementary school (not an everyday occurrence!) I’d ask his guest what was his or her favorite cookie and then bake them while the kids played. Over the years Craig’s friends started calling our house Craig’s Pub. As teens, I started calling them the herd that comes to graze. BTW – 5 grazers coming for a half day video game birthday bonanza this weekend. (Number of gamers times number of pizza slices I think they want plus an extra two per person because they are boys divided by the number of slices in a large pizza…) Prayers appreciated that I don’t get trampled in the kitchen!
  • In keeping with the above strategy, drop by once or twice a month to the school cafeteria with a couple of pizzas or one of those giant cookie cakes. Some folks grab a slice and run. Others grab a slice and stay.
  • If you typically pack a treat in your child’s lunch, pack two so that they have an extra to share.
  • Invite others. Waiting around for a playdate invitation that doesn’t come feels lousy. Make the effort to extend yourself. Sometimes there will be rejection, but other times you get a winner.
  • Be intentional about fostering relationships. Even small acts of kindness are nurturing.

What are some friendship strategies that have worked in your household? Please comment and share ideas.  You never know what may help another parent spark a friendship.

Prayer: Loving God, We are wonderfully made to be in connection with others.  Please help those connections to grow among our children. Calm nervous feelings about meeting new people and open pathways for meaningful relationships to flourish. Amen.

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

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