Monthly Archives: July 2015

Peace, Be Still

Poppy by Dan from FreeDigitalPhotos.net

“Be still, and know that I am God! (Psalm 46:10 NRS)

“Where did the summer go? Two months ago I had all of these great intentions. Now it’s almost time for back to school!”

My friend’s frustration certainly mirrored my own at times.  How often have I lamented, “If I just had the time I would…” But then the much-needed gift of time was wasted.

Or was it?

Engaging life at a different and slower pace is a gift.  Give yourself permission not to have to produce every moment. There is a saying, “We are human beings, not human doings.”

Simply ‘being’ rather than ‘doing’ is a gift in itself.

A scripture meditation to help you relax and enjoy that difference.

Sit comfortably in a place free from distractions for just three minutes.

Breathe deeply and focus on one line for each minute

“Be still and know that I am God.”

“Be still.”

“Be.”

May the peace that surpasses all understanding be with you now and forever more. Amen

Rev Doc Lorna

Image “Poppy” by Dan courtesy of FreeDigitalPhotos.net

But I Don’t Want to Run a Marathon!

“Exercising In The Park” by mapichai from FreeDigitalPhotos.Net

Let us run with perseverance the race that is set before us, (Hebrews 12:1(b) NRS)

“But I don’t want to run a marathon!”

I think every parent of a child with special needs has received the pep talk, “This isn’t a sprint, it’s a marathon.  Pace yourself.”

This is great advice for all of us who are caregivers to children who have extraordinary needs. Pay attention to how you care for yourself, how you spread your energy, so that you don’t burn out and you have enough in the tank for the long road ahead. But what if running a marathon was never your goal? What if your personal road to acceptance means literally have running 26.2 miles?

Special needs parent Elizabeth Elder joined one of my support groups and shared her inspiring story:

My husband, James, and I have two beautiful children, a four year old daughter, Annabelle, and a three year old son, Blair. Both of our children were recently diagnosed with a rare mitochondrial disorder that has caused significant developmental delays and mobility challenges. Although we believe they will eventually walk and hopefully run someday, they can’t right now. In fact, they work very hard to sit up on their own. But what they lack in strength, they make up in determination, while flashing the most infectious smiles!

Frankly, running a full marathon has never interested me. Until one day about five months ago… I was having a difficult day and my dear husband gave me a pep talk. Having run the New York City marathon himself in 2009, James likened our challenge to running the marathon. He explained how our situation is not like a sprint. We can’t just give it our all with the comfort of knowing it will quickly be over. Instead, we have to follow our kids’ lead and give it our all, day after day, knowing that we have a long road ahead of us. To that, I responded, “but I don’t want to run a marathon!”

The next day I was actually on a run when I had a great epiphany: I CAN run a marathon and I WILL! From that moment, I accepted the road we are on and decided to use my strength to embrace what I have: an able body and two disabled children. Running a marathon is a huge personal achievement for anyone. However for me, running the NYC marathon is about overcoming challenges and proving that perseverance wins.

So on November 1st, I can and I will give it everything I have in honor of Annabelle and Blair and every other determined soul who doesn’t let their disabled body stop them from their own marathon.

Elizabeth has taken on training for the NYC Marathon in order to raise awareness and funds for Achilles International.  So far, friends and family has helped her raise over $7,000, far exceeding her original goal.  I hope my readers will join me in wishing her well and prayers for a successful journey, both physically and emotionally. You can learn more about Achilles International, a charity for children with disabilities and war veterans, here: Achilles International

Family hiking

Supporting God, Help each of us run with perseverance the task set before us. The fact that it is hard at times reminds us that we need you.  We lift up Elizabeth in her goal for NYC and pray blessings on her journey of self-discovery. Amen

Rev Doc Lorna

“Exercising In The Park” by mapichai from FreeDigitalPhotos.Net.jpg

Twelve Tips for Special Needs and the Long, Long Summer

“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

Celebrating Freedom

“Fireworks” by satit_srihin from FreeDigitalPhotos.net

As America celebrates the anniversary of freedom as a sovereign nation, may God bless families raising children with special needs with their own much-needed freedom.

Freedom from anxiety and worry about the unknown.

Freedom from fatigue and frustration.

Freedom from fear of the unseen future.

Jesus said, “Come to me, all you that are weary and are carrying heavy burdens, and I will give you rest.” (Matthew 11:28 NRS)

In giving to Christ the burdens that we cannot control, there is true freedom.  Now, that is something to celebrate!

Loving God, Thank you for your offer to carry our burdens.  We accept! Amen

Rev Doc Lorna

“Fireworks” by satit_srihin from FreeDigitalPhotos.net