Just in case anyone asks

Years have a way of flying by...

Yesterday, I stood on the sidelines of a football field and watched my two sons perform in an award-winning marching band program.

As I looked at their handsome faces, I saw disciplined concentration, focusing solely on their performance.
As I watched the band move across the field, I saw my sons balance on tip-toe, perform ballet moves, twist and turn, march backwards, and reverse directions in split-seconds.
For the duration of their presentation, I watched them hold instruments steady in an upright, level position for 10 long minutes as they entered the field, performed, and exited.
And the whole time, I thought to myself... wasn't it yesterday they were babies?

I suppose you could say, I saw the same things every parent saw: Children who are growing up, working towards a cause, performing as a team.

But for me, each and every single performance, each practice, each bus ride, each time my children are included in an activity, I also see God's miracles at work.

I stand there and watch my sons, and in the back of my mind, I see -- can't help but see -- two young boys who had so much against them. I see the young 3 year old, running through the apartment, babbling in some mix of Romanian and English, smiling at me as he emptied the Pampers box and laid his diapers out in designs on the carpet. I see the 3 year old who couldn't distinguish right from left, who had limited upper body strength (because he never crawled), and who had only known hunger and survival, and who was kicked out of preschool because of his energy level. And then I see him surrounded by peers who support him, who have helped him bring out his best efforts. And I see him marching proudly with that heavy barritone, blowing for all he's worth. And I see God.

I look at my tall, freshman son, playing his clarinet, marching on tip-toe, leaning forward and back. I watch his fingers fly across those keys as he works through a trilly passage. I am so proud, and thankful, because I also see a 17 month old baby who could not stand the feel of water on his skin, who screamed like a banshee when I tried to bathe him.(He had never had a bath). I see a boy who could not walk or run without falling. I see a child who did not speak. And I think of an Occupational Therapist who gently said, "You know he's autistic, too?"

These images flash in front of me as I wait for the performance to start. And then I push those memories to the side, and I watch my sons on the field... and I see miracles, and I am greatly humbled.


It is not for us to know God's purpose or His plan. I struggled with infertility for countless years. And God plucked two boys out of orphanages on the other side of the globe and matched them with this crazy old woman. Why? I can not say. But if we are able to glorify God and be a testimony to His glory and good works, than that is more than enough for me.

The next time someone asks you, "Have you seen God at work in your life today?" please share your miracles! If I am asked, I will gaze with love at two teenage boys, and tell you, "I see Him at work every single day."

May the Circle Be Unbroken...

 Driving to school a few days ago, the conversation was a mix of the usual:
-Don't forget to turn in your assignments.
-Grandma will be picking you up, don't make her wait.
-Did you comb your hair? 
 ... interspersed with school and band updates from the back seat crowd.

Then, I heard my oldest say, "Well, <student> got in trouble for losing his music. Like I do, sometimes."(1)

We were sitting at a red light and I turned slightly to look at my son. Referring to the student, I said, "He is a very nice young man. You know he is autistic, like you?"

My oldest son's eyes met mine for a brief minute. The light changed, we moved on, but the conversation continued.

As I drove down the road, I continued, "I got to know him a little bit at band camp. You know he's hard of hearing, too? Actually, I don't know if it's auditory processing or deafness... He is very polite and really is trying hard." Both of my sons attested to the young freshman's earnest efforts, and good attitude.

I then asked my oldest son, "Are you helping him, the way the upperclassmen have helped you? Are you looking out for him the way others have looked out for you? You understand... Leaders are advocates, Leaders help others learn how to help themselves. You're growing up, you need to be as positive in this child's life as others have been in yours."

From the backseat, there is a moment of quiet, then "I'm going to talk to my friends who are section leaders. We can help him. I'm going to talk to the band director, too."

As I smiled to myself, I asked "Well, what are you going to say? You can't just walk up, point at someone, and be insensitive. You must find the right way to say things, help them keep their pride, but achieve goals, too. Let's have a plan."

And so, we practiced social skills ... 
-When talking to the upperclassmen and section leaders, to be discrete, quiet, and to choose the appropriate students who will work with this student.
-When approaching the Band Director, to start delicately, with "Excuse me, Sir" and "I thank you and respect you" before broaching any concerns about the needs of this particular student. 

Later that night, I asked my son how his efforts were received. "Well, mom, some of the other kids are going to work with him. I'll look out for him, too. And <Mr. Band Director> thanked me for coming to him and telling him my concerns. He said he knew he was autistic and is going to hold him to the same high standards he holds me."

I told my son I was proud of him, of how he conducted himself, and how he stood up for someone who needed help. I reminded him of his goal to be section leader, I reminded him, "This is how a true leader operates. They build their team, then they achieve greater goals." I reminded him, "Think about the upperclassmen and students who look out for you, teach you, and help you."

He responded by saying "Yeah" and telling me he needed to get back to his minecraft game, and that he loved me. (He got it, but he was done).

Fast forward to last night. I was at work, and Grandma was on the parenting scene. She sent me a rather lengthy text (no easy feat for Grandma), telling me how a compassionate, caring Senior band student had stayed after school with my oldest son. For almost an hour, they had worked on my son's marching routine.

You see, while my son is blessed with the ability to quickly memorize music, coordination of hand and feet movement is much more difficult for him. This is because of challenges with "crossing the midline" or "cross-lateral motion," often experienced by persons who are Autistic. (2)

Here at our house, this is a skill we've been working on since my oldest son's diagnosis, almost 10 years ago. I would use masking tape and create figure 8's on the garage floor - and walk those 8's with both of my sons. We would play a foot-hand/sock-matching game, we did grapevine walks, and crab walks... and so much more. And for all that effort, the boys have made remarkable progress. But some challenges still remain. We will keep working, keep praying, and keep moving forward.

And so, I'm thinking about a Senior student with a kind heart. This same Senior (and several other beloved band members / upperclassmen) have been looking out for my son since he started marching band last year. They have been patient - they have been compassionate - they have helped mold my son into a fine member of the marching band. I'm thinking about the parents of these students... what an amazing job they've done in raising children who are making changes in this world - at young ages. They will go out and do amazing things, of this I'm sure. And they are teaching those around them to build one another up, not tear them down. We should all behave in such a grand manner.

.... May this circle be unbroken!



(1) To learn more about Executive Functioning and Organizational Skills, click here:  http://www.ncld.org/types-learning-disabilities/executive-function-disorders/organization-crucial-executive-skill-child-ld
(2) To learn more about Crossing the Midline / Cross-Lateral Motion, click here:  http://nspt4kids.com/parenting/help-your-child-develop-the-crossing-the-midline-skill/

Through his eyes

Back and forth he walked.

Every so often, he would sit down, but was back on his feet in moments.

Back and forth, up, down. Making random comments as he passed.

I was exhausted. I had nearly cancelled our weekend because I was too tired to face the task of packing. Sharp, chastising words were almost out of mouth, but I stopped as I looked at his eyes.

He was sitting across from me, looking right at me, meeting my gaze. He needed me to understand.

I waited.

He said, "Mom, this isn't home."

And there it was, staring at me: Autism.

As my son has matured, the days of constant and intense autism vigilance have lessened. Sometimes we go weeks without facing Autism. But it still lurks in the shadows.

So as my son looked me in the eye, searching for reassurance, he said, "This isn't home. My things aren't here."

And I looked him right in the eye, took a deep breath and said, "I love you. You are safe. But we are not going home. You are going to spend a lifetime making transitions, and this is one of them." 

As I said the words, I prayed them, too. "You will go to college. You will have a career. You will travel with your wife and family. And you will be able to survive it all and sometimes have fun, too."

I'm not sure he believed me, but he seemed reassured. He settled down and enjoyed the weekend. New experiences (transitions and surroundings) are not easy for autistic persons, but we had a good time at the lake. Yes, there were compromises along the way, but he (and his brother) survived and had fun!

As for me? Well, I'm not going to forget looking into those eyes. It's taken years of effort to get this young man to make consistent eye contact. But he can do it. He did do it. And the same boy who (years ago) could not understand what "hunger" was, who could not understand the basic signals of his body, sat down and talked to me and tried to tell me what was going on in his world.

I'm always amazed how God works in our lives. I thought my weekend prayers were simply going to be of thanksgiving for good friends, and a blessed break from the demands of the world. In the end, I was thanking God for so much more: for the strides made over the years, for the reminder of work yet to be done, and for giving hope for the future... to both of us.

Could a greater miracle take place than for us to look through each other's eyes for an instant?
Henry David Thoreau

A Sign of the Times

- Take medicine.

- Drink Rehydrate.

- Wear lanyard/key.

- Music & Instrument.

Those words are being printed on a small, bright sheet of paper. Then the paper will be taped on the wall at eye level in my son's dorm room when he attends band camp next week.

Whoa! Mom's a bit overprotective, huh? Maybe a bit extreme?  No... Mom's making sure she does everything possible for her autistic son to have a successful first trip to away-camp. 

Signs, Signs, Everywhere there's signs...

In our house, as in many homes with special needs children, signs help us learn a new behavior. Signs (and visual or written schedules) can be a great way to help my son learn sequential processing.

There's the Morning Routine sign hanging in the boys' bathroom. It's quite the conversation piece for visitors!

Sometimes signs are reminders.

On the fridge, a memory from elementary years still hangs: "No picking or tearing of notebooks or clothing." That sign was on both his desk and his binder for a while.

Sometimes signs have a deeper message.

There's a Creed that hangs by my son's bed. This is about positive thinking. I created it in a fit of exasperation. Far too often, my son's demeanor was negative, like a grumpy old man. One day I decided: We will learn a new way to think. (Even if it was simply memorization, I knew the words would eventually seep into his spirit). So we say his creed with our prayers.

Did I want to hang these signs? No.
Do I think they add a stylish touch to our decor? No. 

Will I hang a sign if I think it will help my son navigate successfully through this life? You better believe it!

Every day, my son makes great strides in his world. He's come a long way over the years. It's my hope he won't need signs and schedules throughout his house when he matures. (Barring some sort of art-deco obsession with signs). 

With prayer, practice, and God's grace, he will be ready to face the world.

I'm sure of it. 

I've seen the signs.

Check out: http://www.handsinautism.org/pdf/How_To_Visual_Schedules.pdf if you'd like more information on Visual Schedules.

Being a Man

 He was 12 years old and in 6th grade... from September 2009

As I pulled out of the hospital parking lot, the teary voice coming through my cell phone said, "Mom, I had silent lunch today. I couldn't sit with my friends. The teacher warned me to stop talking at least 5 times but I couldn't stop, so I had silent lunch."

I still had 45 minutes of commute to clear my head from work, and needed time to think about my response. My mind was going in numerous directions: I was thrilled my Aspie son has a group of band buddies (he has friends!!!) to sit with at lunch. I was glad to learn the teacher's are being understanding yet not letting him get away with inappropriate behavior in class. And I was sad my son was upset yet proud of him for telling me what's going on in his life. All I said at that time was, "I love you honey, thank you for telling me what's going on. We'll talk about this when I get home."

After I got home and changed clothes I sat down with Robert. As he snuggled next to me, a thought crossed my mind: There won't be many more times he'll want to snuggle with me as he grows up... and I already miss the feel of him in my arms.

And thus came the inspiration for my answer. I waited while Robert relayed the days events to me then I asked him, "You know how you tell me you're ready to be grown up? Ready to make your own decisions? Ready to make the rules?" He nodded yes.

And I asked him, "You know how I tell you it's not time for you to make the rules? That you're still a kid and not a man yet?" He nodded yes.

I said, "Well let's talk about what a righteous man would do. A righteous man will face his challenges head-on, he will admit his mistakes, face the consequences of his actions, then move on and strive to do better. Can you do that?"

He quietly said, "Yes Mom, I can." He didn't try to argue with me, didn't try to tell me he was the victim, didn't sass me.

I think he took a small step towards being a man.

A Moment in the Great Dismal

Original post January 14, 2010

I grew up in Chesapeake, Virginia... and remember when it was a small, rural town. Sadly, much of it's charm has been swallowed up by the Norfolk/Virginia Beach metropolitan sprawl. In the 90's, bulldozers destroyed the trails I used to ride horseback down to the Elizabeth River. Expensive homes now line RiverWalk and the people living there now have no idea of the beauty that existed before their fancy houses were built. I miss the Chesapeake that once was, and the beauty of life along the Dismal Swamp and Atlantic Inland Waterway.
 
I also miss my Dad. He was the one who taught me to ride a horse, how to find a trail, and taught me to appreciate the beauty of the silent forest. Although the Navy brought him to Virginia, he never forgot his cowboy roots. He worked long hours, and prayerfully worked through the memories of Vietnam that shaped him in ways I'll never be able to fathom. It was when he communed with nature: in the garden, with our horses, putting up hay, or out in the woods, where he was most comfortable and found peace.

Recently I brought out his book of poetry to share with the boys. Since it's Father's Day, I'm sharing with you, too, as a tribute to his memory.

A Moment in the Great Dismal

As you rest and get your bearing,
Almost feel the swampland staring.

Feel the peaceful power of love,
In the soft cooing of a dove.

Hear your name called so clear,
Even though no one is near.

The breathing, do you hear it?
Is it the wind or the swamp's spirit?

Smell the soft perfume of flowers,
The scent will linger for hours.

There, see the mother's fear is gone,
As she breathes reassurance to her fawn.

Sense the snakes moving back in fear,
Creaking frogs silenced as the way's made clear.

As jeweled spider-hung curtains fade apart,
The ancient swamp's drawing you to her heart.

While you feel the gentle heartbeat
Of this ethereal retreat,

Know that man can never own it,
This enchanted place only few know.

Hear the ringing, listening silences,
A soothing benediction to weary senses.

Feel a mending heart as your spirit lurches,
Not felt in many man-made churches.

Hear the rattle of your horse's bridle,
Reminding you he's much too idle.

Then feel the gentle tugging of the pack mare,
Letting you know that she's still there.

Just as the earth's spirit chose and came,
Know that you will never be the same.

Written by my Father
April 21, 1991

Seeing Past the Tears

Twice in the last month, I've found myself crying - actually crying - in public.

I didn't hide my tears, either. That's something a bit new for me. I've always been taught to be strong. Hide the emotion. Hide the bad. Carry forward. Failure is not an option.

Besides, I didn't have time to address my feelings. I had children to house and feed. I had bills to pay and had two children on the Autism spectrum who needed every bit of parenting energy I could give them. So I stuffed those emotions down deep. And I moved forward.

So what brought it on these recent bouts of tears?
Was it the follow-up report from the doctors after my youngest's emergency surgery in December?
Was it my oldest's beautifully insane prom experience?
Was it the excellent IEP meeting last week?
Was it healing, as I reduce some of the toxic demands on my life, and focus on my health and my children?

I think it was all of the above -- and then some.

Am I ready to be hauled away to an asylum? Is it time for the pretty white jacket that reaches around back?

I suppose those answers are debatable. But more likely it's my response to the trauma of years as a special needs parent.

What? That sounds negative? Dramatic?

According to Dr. Astrid Herard, a pediatric psychiatrist at the University of Chicago, "it's not just single traumatic events that can trigger post-traumatic stress disorder. For parents of children with chronic diseases, the years ... can take a collective toll and produce similar symptoms."

Friends, parenting special needs children IS traumatic. The diagnoses may vary, but the reality remains.

A diagnosis is given. Behaviors are documented. Physical limitations are noted. Therapies are started. Prayers are said. Your world tilts. And...

Every time someone stares at your child in pity, or judgement,
Every time a stranger offers unsolicited parenting advice,
Every time a teacher questions your parenting ability,
Every time someone else's child does the age-appropriate thing,

Every time you look at the pile of hospital bills,
Every time you have to leave the playground early,
Every time you have to pack a bag (or wheelchair or stroller) of adaptive equipment,
Every time you have to refuse an invitation because your child won't be able to adapt to new surroundings,
Every time your child isn't invited,
Every time you hold them back for their safety,
Every time you have to explain a chew toy, or a weighted vest, or start buying refrigerator tubing in bulk at the hardware store,
Every time you celebrate a success at Therapy,
Every time someone says "Well he's so smart" or "He looks normal,"
Every time you sit down and prepare to negotiate through an IEP meeting,
Every time you look at the Bible open on your table,
Every time the babysitter quits,
Every time you write a letter of appeal for insurance benefits,
Every time someone says "I know how you feel" when they haven't got a clue,
Every time you see "The Art of War" beside your editions of Special Ed Law on the bookcase...
.... You're tucking away hurt and trauma.
 
And eventually, those pent-up feelings have to be released. A few triumphs in the face of long struggle can cause everything that's stuffed down deep to rise to the surface. Once the tears start falling, sometimes it's hard to stop them... even harder to sort through the emotions that accompany the tears. But it can be done. With honesty, rest, reflection, and prayer the old hurts and worries can finally be processed. And healing begins.

Does this mean the traumas go away? Unfortunately, no.

My tears are signaling a surge of hope, as I see milestones crossed, triumphs made, and goals expanded. My tears are also in thanksgiving, for a community that has rallied around my sons in a way that humbles and down-right amazes me. God has been so good to send us here.

But this is not the case for all special needs parents. Some children will always be in a wheelchair. Some will depart this earth much sooner than expected. Some will never utter a word, hear a sound, or take a step. Some parents will never have a community rally around them.

Raising children isn't easy, and all good parents work hard within their families. But, parents of special needs children have greater demands in their daily existence. It's that simple.
 
I beg of you, if you know a family with a special needs child, please pray for them. If you feel led: cook dinner for them,  mow their lawn. Give them a couple hours out of the house. Send them a card. Be gentle. Encourage them in good health. Listen, but do not preach. Theirs is an exhausting path to walk.

And should you be there when they cry, simply hand them a tissue, give them a hug. You don't have to say much. Your acceptance and love will help them heal.

Reference: http://www.chicagoparent.com/magazines/web-only/2010-january/parents-and-post-traumatic-stress-disorder