Tag Archives: Hope

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

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Hope and Acceptance

Special Needs Parenting, , , , ,

 

 Special Needs Parenting Cover

 

Recently I published the first in what I plan to be a series of books providing suport to special needs parents.  Today I am sharing an excerpt from the final chapter.

For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope. Jeremiah 29:11

In my own parenting experience I live the tension between encouraging my son Craig to reach out for new developmental milestones and to accept the reality of life with autism. It is a fine line. Embracing a new hope for him, dreaming different dreams, comes out of acceptance of the reality of autism. What are his limits? Even as I encourage him toward new skills, are they beyond his capacity? Do I push for too much? Academically, my son has achieved levels far beyond what diagnostic testing indicated as his capacity. He has gained levels of independence we never thought possible. One of his Craig’s greatest gifts to me was a simple statement he made after he graduated high school. “Thanks for pushing me to try so hard. I did things I never thought I could do. You believed in me when I did not believe in myself.”

Temple Grandin, a popular speaker with autism, recently said at a conference that the best things parents can do for their kids with autism is push their abilities and keep striving for that next milestone. How much is enough? Where is the line between acceptance and hope versus denial of real limitations?

A parent recently told me that she struggled with acceptance because it feels like giving up. I can understand that. It can be hard to say, “It is what it is and cannot be changed,” because that involves letting go of parts of an anticipated future that feel very real. Hope in tension with acceptance embraces the new and different reality of special needs and seeks the new possibilities within it. The words of the serenity prayer are very wise:

God grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference.

 It is okay to accept a diagnosis of autism and okay to hope for, and actively work toward, relief from a particular behavior or acquiring a new skill. One cannot be changed, the other can. The line between acceptance and hope versus living in denial comes with the wisdom of understanding the difference between what can be changed and what cannot. Craig has dysgraphia. Pushing my son to acquire handwriting skills that are beyond the abilities of his brain would be cruel. Encouraging him to learn his assistive technology and find creative ways to communicate empowers him to succeed within his capabilities.

That is an example of hope and acceptance in the midst of my everyday life with two steps forward and one step back. That’s a dance we special needs parents know very well. That place of hope and acceptance exists even in the hardest of parenting experiences. Recently I traveled to experience Rev. Leslie Neugent’s boundary-breaking special needs worship service “Parables” at Wayzata Community Church in Wayzata, Minnesota. It is a worship service with, and led by, families with special needs. Leslie offered a poignant message of hope in the midst of acceptance.

Her son J.J. is extremely impacted by Down syndrome and has fragile health. One of the many times her son’s life balanced on the edge of this world and the next, she asked her doctor, “Will he make it through the night?”

The doctor shuffled his feet uncomfortably, “He is a very, very sick little boy. He shouldn’t.” He thought a bit more, “But he probably will. That has nothing to do with me and nothing to do with you. We are out of the equation. This is between him and God.”

While there is always hope in Christ in all things, the acceptance of God’s love for J.J. and the need to give the control over to God brought peace in the midst of yet another bedside vigil through the darkest of nights. Acceptance of God’s sovereignty brought peace. Now for the rest of the story. Today J.J. is a delightful young man who loves to shake hands and is quite the flirt, though that may be reserved for pastors who bring him blueberry pancakes.

Perfection is Over-rated

Ours is not a perfect family and for that I can truly praise God. In Japan there is a beautiful style of art called Kintsugi, broken pottery repaired with seams of gold, as seen on the cover of Special Needs Parenting: From Coping to Thriving. Through its brokenness the pottery is made stronger, more interesting, and more beautiful. I think that is what God does through us. God pours his gold into our broken places, making us whole, making us stronger, making us interesting and beautiful in a way that surpasses what others would call perfect.

My hope is that through this book and the suggested tools readers find a new sense of wholeness as parents. They are tools to revisit again and again. Becoming a resilient parent takes intentional focus and it takes time. I pray that special needs parents feel the equipping power of God walking beside them on the journey ahead.

Special Needs Parenting: From Coping to Thriving is available at Huff Publishing.

 

 

Mile Markers

Special Needs Parenting, , , ,

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I enjoy running and regularly log about 15-20 miles a week.  Yes, I’m one of “those” people who sets an alarm for 4 a.m. to get in a run before the sun comes up, but I live in Texas so I have a good excuse for my personal kind of crazy. I need a regular dose of endorphins and time outdoors enjoying God’s creation when the only sounds are my feet on the pavement, air moving in and out of my lungs, and the stir of the breeze through the trees. Of course, sometimes creation welcomes me with mosquitos and the special brand of “air that you wear” unique to the humid gulf coast. It’s kind of a mixed blessing!

Being a bit competitive by nature, I enter four or so half marathons a year. I find that I prefer the challenge of longer distance races.  Maybe that has to do with being a mother to a child with special needs.  I’ve learned as a parent to set long term goals and plot the incremental steps in getting there. One step at a time, one therapy at a time.  I always start out on race day with a plan: pace, nutrition, hydration, all plotted out based on the mile markers.  Those mile markers are so important, reminders of how far I’ve come and how far I still have to go. I also use them as reminders to take an inventory. Am I hurting? Am I tired? Do I need to do some self-care?

Mile markers are HUGE!

I’m thinking of mile markers because a dear friend has a son who is turning two today. That is a huge mile marker.  I look back at how far he has come and look ahead at how far he has to go.  So do his parents.   At this particular mile marker, his mom is hurting today and I hurt for her.  Mile markers are tough when where we are doesn’t match the plan we had back at the start line.  As parents, we can’t help but take stock at certain times, looking for developmental mile markers that should have been reached, but remain ahead (we hope!) in a future we cannot see.

When faced with what we do not know, there is comfort in going back to what we do know.  Where Is God in the life of my friend’s family today? Over 2,500 years ago the prophet Jeremiah wrote to the people of God who were living in exile with an uncertain future that they could not see.  They longed to be in a place miles away, yet could not see a way to get there.  Jeremiah shared this message with the people.

For surely I know the plans I have for you, says the LORD, plans for your welfare and not for harm, to give you a future with hope. Jeremiah 29:11 (NRSV)

God’s plan is not for anxiety and worry.  Rather, God’s plan is for their welfare and a future with hope. God doesn’t promise us perfect, but God does promise that he is for us and with us at every single mile marker. When we are hurting, and not where we thought we would be in our lives, God’s message is one of comfort and hope. I pray that for my friend today.

I am not negating my friend’s very real feelings.  It’s painful.  I get it. I’ve lived it with my own child, as has every parent of a child with differences. Maybe my lesson learned in running applies back to parenting.  Mile markers are a good time to check in with ourselves as parents and ask, “Am I hurting? Am I tired? Do I need to do some self-care?” When we pay attention to what we are experiencing within ourselves, then we can take care of those needs, helping us to refocus on God’s promised future waiting for us just around the corner.