Tag Archives: parenting

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 Gift of Presence

I receive a devotional through Facebook called “God Wants You to Know.”  They come at random and I find I am always blessed by what they has to say. A recent one said:

On this day, God wants you to know that…

…you are never alone.

As special needs parents, it is easy to feel alone at times. It can be a very isolating experience.  Having a family member, friend, prayer partner or congregation walk with us through that journey is enormously helpful and healing.

Recently, Dr. Steve Grcevich wrote in his blog at Key Ministry, “Give families the gift of presence…Isolation is an unfortunate byproduct of many of the more common mental health conditions we treat. Being present for those who are hurting in difficult times is an immediate expression of the love of Christ.” This gift of presence applies beyond mental health treatment to the isolation we feel as parents of children with chronic conditions, whether they are physical, developmental, intellectual or behavioral. Being present for those who are hurting offers God’s presence lived out in flesh and bone.

One of the most beautiful biblical examples of the gift of presence is seen in the story of Ruth.  Due to a famine in Bethlehem, the family of Elimelech and Naomi moved to the land of Moab and lived there for so long that their sons grew up and married there. Later the family patriarch died, as did the two sons. Having lost their husbands, three widows were living together facing an uncertain future.  In a culture where all f your wealth and status was tied to the men in your life, this was a very precarious position. There is a reason the Bible prompts so often to remember the widow. Namoi urged her daughters-in-law to return to their families where they could be taken in and hope to remarry since they were still young enough to have children.  Naomi, past child-bearing age, chose to travel to her home country alone and into an uncertain future. One daughter-in-law returned to her home:

But Ruth said, “Do not press me to leave you or to turn back from following you! Where you go, I will go; where you lodge, I will lodge; your people shall be my people, and your God my God. Where you die, I will die– there will I be buried. May the LORD do thus and so to me, and more as well, if even death parts me from you!”  (Rut 1:16-17 NRS)

Talk about the gift of presence!  Ruth was all in, despite putting her own future at risk. What an incredible witness to God’s ability to fill the gift of presence! 

That gift of presence pops up in unexpected ways.  A parent recently contacted me looking for a prayer partner.  God brought to her a great prayer partner with a shared life experience and both have contacted me saying they have been blessed with that connection.  Another parent who has been struggling to find time to connect more closely with her husband in the midst of many therapies, extreme medical needs, and three children with hectic schedules, found the gift of presence in a weather make-up day at school when she and her husband were both off work for a holiday. A guilt-free indulgence of a whole day for just the two of them to be fully present with each other was an enormous blessing. Today I just left a meeting with a church planning to start their very first special needs outreach. They are a bit anxious about that future, mainly out of a sense of wanting to meet the need with excellence, but the gift of presence they are providing is enormous to those who need that opportunity to be welcomed, heard and filled with the hope of Christ in connection with each other. 

The gift of presence comes in all kinds of shapes and it is a blessing in the lives of those who give and receive it each and every time. Thinking back to the most challenging times in my life, key people come to mind who walked with me through the darkest of times.  I can also think of times when I tried to pay that gift forward to others.  How have you given the gift of presence?  How have you experienced it when you needed it for yourself?

Mile Markers

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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.

Happy Mother’s Day

Especially today, I am thinking of all the amazing moms I know who are raising children with special needs. Our kids have all variety of gifts and abilities, but some lack the capacity to use words to tell their moms how wonderful they are. How do we receive love when there are no words?

The truth is, we feel it easily and often. Love is sometimes best expressed without words.

I often experience God’s love in wordless wonder. A glorious sunrise brightens my drive to the office each morning.  I am greeted by a host of songbirds as I wind through the prayer garden from my car to the door. I sit outside to write when I can, blessed by the gentle breeze that stirs the scent of flowers blooming in my neighbor’s yard. In the evenings, I enjoy the vastness of the night sky and realize how very small I am and yet how God cares for me and for each and every person throughout time.  In the midst of all the glory of creation we are each wonderfully made, a unique fingerprint of God expressed in flesh rather than words.

The love God has for us transcends words, as does the love between a mother and child. This Mother’s Day, I pray for you to feel deeply rooted in your child’s love and moved beyond words by God’s love for you.

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.

Easter: It’s All in the Seeking

For me, Easter is steeped in memories of my childhood. We’d pile in our two-toned Oldsmobile, nicknamed Gladys, driving two hours from my home in the Bay Area of California to my grandparent’s house in Sacramento. The eternal question was offered up regularly by me or my brother in the backseat, “Are we there yet?” Saturday was a blur of preparations, including boiling and dying eggs.  Finally, the big day arrived. Easter Sunday! I was eager to get up and see what the Easter bunny brought. “No candy until after church.” But then grandma would wink at me and, when my parents were out of sight, sneak me a small foil-covered chocolate egg.  She also regularly let me have ice cream for breakfast.  I loved visiting grandma! Then it was off to church, my tightly combed ponytail facilitating a smiling expression that belied my discomfort in the inevitably itchy Easter dress.  My reward for sitting quietly all through worship?  The Easter egg hunt afterwards in grandma’s backyard with all of the cousins! There were six of us so I learned to move fast and hunt low, being one of the younger and, therefore, shorter children.  In addition to tons of boiled eggs, plus plastic ones filled with chocolates, there was also one special egg that had a dollar in it, a big find for a preschooler in the mid-60’s!  Ready, set, GO!!!!  Mayhem ensued in a free-for-all, mad dash for those precious eggs. Afterwards, grandma gathered up the boiled eggs and made egg salad and deviled eggs out of them. We kept the candy. The one lucky recipient of the money egg was typically just a bit smug, snapping that crisp dollar bill under the disappointed noses of those less fortunate.

The Easter egg hunts for my son were much more sedate.  Being an only child with ASD and having no extended family living within 2,000 miles, our egg hunts were for a party of one. The community egg hunt was over-stimulating and that competitive scramble of hundreds of children guaranteed a meltdown.  At times I have felt guilty that his Easter memories were so different from mine. I suppose my concern was that I offered him something less. That guilt caused me to compensate with more eggs than one child needs, and inflation greatly blessed the contents of the money egg. What Craig taught me as he grew up is that what I offered wasn’t less, rather it was different. More important, it was just right for him. Looking back now, he says he loved knowing he didn’t have to rush. He could really enjoy the moment, knowing that the hunt was all for him and the one extra special egg was his reward if he just kept looking long enough.  We hid that one very well! He never wanted us to show him. He needed to find it for himself. For him, the joy of the hunt came in looking for something, even when what he was looking for wasn’t where expected it to be.

What Craig experienced, on a rather profound level, has much to do with what Easter is all about. After Jesus was crucified and laid in the tomb, on the third day the women came to attend his body. Except Jesus’ body wasn’t where they expected it to be. Thus began a Easter hunt of a much more important nature.

Then the angel spoke to the women. “Don’t be afraid!” he said. “I know you are looking for Jesus, who was crucified. He isn’t here! He is risen from the dead, just as he said would happen. Come, see where his body was lying. (Mat 28:5-6 NLT)

What Christ offers to us through the resurrection is a gift for everyone, but it is a gift claimed through the individual effort of seeking. It is not a gift another person can bestow upon me or you or anyone else. Rather, this gift only comes through seeking for ourselves, encountering Christ, and proclaiming him as Lord in a  one on one encounter. The joy of discovery in finding Christ magnifies that innocent joy of the childhood experience of Easter. It celebrates finding what we are seeking.

Sometimes as parents of children with special needs, what we are seeking is simply a practical answer to how we can be part of the Easter celebration. With Easter Sunday coming tomorrow, I understand how it is hard for some to be part of those large celebrations. Crowded sanctuaries, physical accessibility limitations, sensory and anxiety, issues all make high holy days especially challenging.  If you are looking for a way to be part of a worshiping community on Easter Sunday, here is a wonderful option available online. Front Door Online church specifically seeks to offer a worship experience geared to families with special needs.

http://drgrcevich.wordpress.com/2014/04/17/the-front-door-online-church-for-families-impacted-by-disabilities/

Happy Easter to all and may you find that which you seek.

What I Learned on World Autism Awareness Day

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, tulle and a bow, all framed in a malleable brim. 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 group 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.

Autism Awareness Day