Parenting Confessions from TV Land

It can't be easy on my boys, being raised by a Geek. I can't help myself. I'm a reader, a thinker, and a researcher.

I had developed some strong ideas about television and parenting, before I became a parent. The plan was simple: More Books, Less TV. If the tv was going to be on, it would only be PBS and documentaries. No trash tv, no questionable values. No need to fill our brains with something that wasn't educational or purposeful. It sure was easy to be an authority on parenting... when I didn't have children!


Looking at the big picture, some of my righteous pre-parenting goals have been met. Reading does happen in our house, most days. Our home library is an eclectic mix of children's classics, historical biographies, research and educational volumes. We don't have cable tv, and thankfully have never watched a single "reality" show. (I still maintain that our lives are as much 'reality' as I can handle).

Yet, my sons, with their needs and learning styles, have changed my perspective on tv viewing for children. With great humility, I admit my oldest (born overseas and not my son until age 3-1/2) learned a lot of English from watching 'Yan Can Cook.' Props also go to The Weather Channel, for helping me teach geography, math, and social studies to both boys. My son still has a framed, autographed picture from Dr. Steve Lyons on his wall, and the "Tropical Update" remains must-see viewing on the internet. As the boys have gotten older, I've allowed them to watch NCIS and Dr. Who, but that was the extent of our 'fluff' tv-watching.

But, there is something I must confess. I watch junk tv comedy (love my Golden Girls dvds) when the kids aren't around. On top of that, I've developed relationships with two very different men. At first, I was able to hide these gentlemen from my children. But both men make me laugh and forget my troubles. I escape with them when I am tired and need a dose of humor. One day I turned on junk tv while the boys were home. They were in their rooms, they weren't paying any attention, I was tired....

And as I was watching an episode of Frasier, the boys heard me laugh. They came out to the living room to investigate and ended up sitting with me through the episode. And I noticed something. My oldest son, who is very high functioning and diagnosed with Autism, looked at me on a couple occasions and said "What does that mean?" I realized, the double entendre's and awkward social situations on the show were teaching my son Social Skills, better than any lecture from me. And thus the boys met those two special men of mine, and we began a journey through (almost*) every episode of Frasier, and then Bernie Mac.

The dialogue that's been created in our home has been fantastic. "Why did Frasier say that?" ... "Is his Dad upset?" .... "Was that the right thing to do?" .... "Why did the children do that?" .... "Is that the right way to react?" Yes, it takes us longer than most people to get through the episodes, and my youngest son patiently waits while the oldest figures things out. But he is learning, and having fun while he learns.

I watch my oldest with interest during these episodes. I see where we need work, and also how far he's come. There was a time when he could not identify idioms. Now, when an unfamiliar figure-of-speech is used, he will turn to me and ask, "What does that mean?" Sometimes he will seek reassurance from me, "That's funny, isn't it?" ...

And once again, I am amazed at what God has brought forth, for the opportunity for my son to learn, for the bonding that comes with laughter, for the family time, and for the growth. And I am humbled, because the entire process came out of something I had considered off-limits.

As for learning social skills from tv shows, an article from Psychology Today states, "viewers often empathize with the characters or at the least think about what they would do if they were faced with similar situations. Constant viewing of these shows provides the audiences with opportunities to broaden and enrich their social toolbox and to think about some of their own issues." **

It's tough to let go of lofty ideas, and hard for parents to admit when they're wrong. I could've snapped off the tv as soon as the boys came into the living room that day. But we would've missed fantastic social skills teaching and family time. My vision and hopes for the boys haven't changed. I still use documentaries to reinforce science and history. Books are still prized possessions. God is our Anchor. Reality tv is still off limits. I'm still a Geek.

Our existence is nothing like 'The Brady Bunch' or 'Father Knows Best,' but if I am to be honest and give due credit, there are several folks from TV Land who've helped me along the way. My pre-parenting self might cringe, but I heartily say "thank you" to Elmo, Yan, Kipper, Thomas the Tank Engine, Franklin, Arthur, Bill Nye, The Magic School Bus, Mr. Rogers, Schoolhouse Rock, Andy Griffith, Reading Rainbow, and... Frasier & Bernie Mac. You have all helped me raise my sons.






*You should know by now they aren't going to watch every episode...not all of it's suitable viewing for children.
**http://www.psychologytoday.com/blog/communication-central/200908/can-tv-increase-social-skills

Someone Saved my Life Tonight...

With all due respect to Sir Elton John, this song has been playing in my mind since this idea took root in my head... hence the title of this post.

When people learn about the boys' adoption stories, I'm often told, "You saved their lives." People mean well, and I realize the statement seems true...but do they really understand it when I say, "No, these children saved mine?"
~~~
Growing up, I dreamed of being a Mom. Not a lawyer, or doctor, or fireman. I wanted to be a Mom! As strong as that desire was, I also had a stirring in my spirit as I got older. I felt this overwhelming conviction I would never get pregnant, that my journey to Motherhood would not be easy.

The years rolled by ... high school, work, college classes, eventually marriage. A very painful period of my life began. It was a decade of infertility. A decade of feeling unworthy, of confusion, of bitterness, of pain. A decade of hating my body, and it's apparent betrayal. A decade of avoidance - of the problems in my marriage, and in my body. A decade of inadequacy, angst, and pleas to God. But through it all, my heart's desire did not change or waiver. I still longed to be a Mom.

Twice during those years, once in Boston, once in Northern California, I contacted social services  and inquired about adoption. Both times, I was greeted warmly until they learned I was married to a man in the military. The answer was the same: "We're sorry, but military families are never in one place long enough to complete the foster adopt process." Slam, another door shut in my face. Another hurt. Another rejection.

Looking back, I can see God's plan and purpose. But during that dark time, loss and despair were all I saw, all I felt. I grieved. I built walls. I tried to hide it, but the dark cloud in my spirit grew stronger. I was trapped, in several ways. The call to motherhood was stronger than ever, yet the way was unclear.

The year was 1998. I opened the newspaper and saw an ad for a class entitled, "How to Adopt." It had to be the Spirit which made me want to go to the class and try again. I'll never know what made my ex-husband agree to attend the class, but he went also. At the class I learned about hundreds of thousands of children living in orphanages in Russia, Romania, and the eastern bloc countries who were in need of homes.

And all of the sudden... Doors opened! Suddenly, there was possibility, encouragement, and support. Papers were signed, home inspections completed, applications submitted, all with hope in my heart. I was going to be a Mom!

All the while, events were unfolding on the other side of the globe. A teen mom, with no source of support and an ill child, made what must have been a very difficult decision. Records show she visited her son 3 times (after he spent a year in the maternity hospital) before signing papers that would allow him to be adopted. She signed those papers in September of 1999, and in October of that same year, I held a picture of the child that would become my oldest son. The caseworker asked me, "Do you want to adopt him? Do you realize how sick he's been?" Without hesitation, my answer was "Yes!" I held him for the first time in May 2000. A decade of infertility. 14 months of an intense adoption process. I was a Mom! Thank you, God!

Our adoption visa was set to expire ... and I had always hoped to mother more than one child. So we moved forward quickly with a second adoption and August of 2000 found me holding another child's picture in my hands. A child who'd been removed from a reportedly unfit home. My only answer was, "Yes! Yes, I want to be his Mom!" I held him for the first time in December of that year.

Several salvation stories started blending together. My sons gave me focus, helped me develop a back-bone, and helped my dream become reality. Both boys were developmentally delayed, but as therapy, love, and prayer surrounded them, their lives became stories of restoration. While I centered my efforts on them, I saw our home life more clearly, and when my oldest was in danger, God orchestrated events (some rather painful) that eventually led to stepping away from the marriage, despite every instinct that said stay and cower. Over time, God used the trials and despair of single motherhood to strengthen my faith and bring me to His gift of salvation.

So let's look at the statement again: "You saved their lives." I'm sure several people have seen me hesitate, then respond, "No, they saved mine." Ultimately, God used each of the three of us, to save each other. My hope is that our story of rescue, redemption, and restoration will be an encouragement to you. Whatever you're going through, keep the faith, have hope. And however you build your family, I pray your story is one of salvation and deliverance, for all involved.

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

Roars and Whimpers

This morning, Autism kept rearing it's head. 
Not in a bad way, just a continual way. 

En route to the doctor's office, he asked me an awkward social question. It was related to women who were walking along the downtown streets. I responded in an exasperated manner, "Why do you keep asking me about this? What is your fascination?" In an equally exasperated fashion he said, "Mom, it's not about sex! I wonder about the diseases. Why would anyone do that to themselves?" 

As I drove along, we had a long discussion, I thought back to a training I'd attended a few years ago. At it, I learned repetitive comments about negative events or situations are not always simply an "obsession." In the words of one of the adult autistic presenters: "Repeated negative comments and questions help me get rid of bad or sad things in my head. If I talk about it, I don't have to keep thinking about it." Then I thought about the repetitive questions. I realized I have to teach him more about choices -- and how some people feel they have none. I have to help him see beyond his black and white world and accept the grey areas. And I need to help him empathize, not judge. We will work on this, I will work to help him understand.

He was antsy at the doctor's office, despite heavy work this morning. He couldn't stop talking. He tried, I could see his effort, but it was as if a switch has been flipped to ON. When we got home, he told me he needed to use the restroom. And it clicked. I thought back to the sensory, to the Occupational Therapy. Sometimes when the biological need to use the bathroom is great, he has trouble processing the message his body is sending to his brain, and his behaviors increase. It had been a while so it caught me off guard. I hadn't thought to ask him if he needed to use the restroom. I should've asked, should've thought of it... I will work on this, work to remember.
 
During the doctor's visit, one of his repetitive behaviors was addressed, and ideas discussed. It appears he has caused some damage to his skin. It can be cured, over time, but the behavior has to be addressed as well. We discussed ideas, and the doctor backed me up, even talked at length while making Robert look her in the eye. Her talk made a difference, she got through to Robert.

When she turned and looked at me, she said, "You're doing a great job." I thought I was going to cry.  I know God has me. He is my rock and my hope. But I am human, and I get tired, and sometimes I feel I can not take this disease called Autism even one minute longer. But that's just emotion. We can take it on, we can tame it. At the very least, we will work on it!

I think back thirteen years. In my hopes, fantasies, prayers -- my sons were the strong, articulate young men of today. But back then, I didn't know if those dreams would come true. I don't know if other dreams will come true. What I do know: through God's abundant grace and our hard work -- we are taming Autism one day at a time. Ever so slowly, we are backing it into a corner. Sometimes it whimpers. Every great while it roars.

But, we will work on it
... And we will move forward!

Talk to Me

This is an older note, written in March 2008. I share it every year as we head into Autism Awareness Month.

When Robert first came into my life, I was prepared for all sorts of possible delays and issues. I'd worked with children for years and had educated myself on all the things that might happen based on his life in an orphanage. I read books, went to seminars, and was ready for the big things: Reactive Attachment Disorder, Oppositional Defiant Disorder, Fetal Alcohol Syndrome. But none of those things manifested themselves.

I worked on bonding with him -- purposely regressing him so that I would feed him, then forcing eye contact while he was eating. I taught him his name (no one had ever taught him his name), and held him as often as possible. He learned English and how to give a "two-armed hug." And I started his musical education early with Mozart, jazz, and big band sounds to soothe his spirit and feed his brain.

At night, after I put him to bed, he would get up and hide behind his bedroom door, giggling, then he would dart out into the living room to see what was going on. He was 3-1/2 but didn't know any English, and almost no Romanian. Telling him to "go to bed" was meaningless, so I would lie down with him until he fell asleep.

And I talked to him. He would lie there and listen to me narrate the events of his day. I would talk about what he'd had for breakfast and what games we'd played. Every night I would tell him 3 or 4 parts of his body: "hair", "eyes", "nose"... and I would touch the corresponding location on his body and amazingly, the little fella would know these words the next morning! Every night I would teach him and each morning, he would tell me his new words. He absorbed language like a sponge! His acquisition was so fast I couldn't keep up with the list of words I was making to share with our social worker on her next follow-up visit.

Soon, I realized (and was so relieved) none of the disorders I listed above would be part of our journey with Robert. But there was something... I knew it wasn't exactly ADHD even though it sometimes looked like it.

Then a friend talked to me, and gently suggested that Robert's issues were neurological and fell under the Autism umbrella. My friend was right and the first diagnosis was Sensory Integration Disorder. Through years of Occupational Therapy in the clinical setting and at home with me, great strides were made, but there was something more... Again, I couldn't peg it, but there was something...

One day I was talking to a friend and she said, "Have you heard of Asperger's Syndrome?" I hadn't but I researched it quickly and Robert fit all the criteria. He is brilliant - a "little professor" as many of these children are, but he has deficits in social skills, language arts, and develops obsessions for certain objects.

You'd think that after all these years, after all the research, meetings, seminars, workshops, and networking with parents and professionals in this field that I wouldn't be surprised by anything.

But Friday morning [in 2008] I was in an IEP meeting at the school and we were reviewing a recent evaluation done on Robert. I am familiar with the test that was used. I am sure the numbers are right. And yet, what's been playing through my head the last couple days are the numbers 4 and 22.

My brilliant little boy has expressive communication skills that test out to an age equivalency of 22 years old. The little professor can build and describe an electromagnet for goodness sake, and he can tell you where your epiglottis is located, so no surprises there.

But because he does not understand all parts of speech, because he does not understand slang and social cues, his receptive communication skills are those of a 4 year old.

4 and 22.


These numbers haunt me.

With the proper therapies the incredible gap between these two numbers will grow smaller. But still they haunt me. What's the missing piece that explains this deficit and will help researchers find a cure and increase understanding?

That critical piece of the puzzle is Autism research and awareness. April 1 will be here soon and will mark the beginning of Autism Awareness Month.

If you know someone who's life is touched by Autism, keep in mind that they are dealing with a puzzle that as yet can't be solved. And if you think they need to talk to someone who understands, encourage them to get involved in a support group, or you can tell them to talk to me.

In Her Wallet

Original post October 2009 when I was still working in the ER... Reposting today in honor of Nurse's Day, and as I move entries from facebook to my blog page. 

A pale, middle-aged woman was sitting in one of my assigned rooms, waiting to be seen by the ER physician. I took her vital signs and started asking her questions about her condition. In between episodes of coughing, she told me about her symptoms, and then looked up to me and said, "Do you remember me?"

Sheepishly I told her, "I recognize your face, but can't remember how we met... it was here in the ER?" She said "Yes, I came in with my Mom and you were so nice to her. You two talked about your special needs sons."

I racked my brain but couldn't - and still can't - remember her mom, or the conversation.

The patient continued, "When I told my Mom I was coming to the ER, she got this out of her wallet and told me to look for you today. She wanted you to read it and keep a copy of it."

I looked down at a yellowing copy of an Ann Landers column. It was dated August 14, 1982 and I wondered if my patient's mother had been carrying this paper around for 27 years. As if reading my mind, the woman told me, "My mom loved that poem so much, she made a copy to keep in her wallet. She's had it for years. She wanted you to read it and make a copy for yourself."

By now I had tears in my eyes. Tears of humility because I could not remember this patient who obviously bonded with me. Tears of appreciation for her walk in life with a special needs child. And tears of hope as I was reminded we are never alone.

I touched my patients hand and relayed my sincere thanks to her, and her mother, and made my way to the copy machine while reading:

"Heaven's Very Special Child"
by Edna Massimilla

A meeting was held quite far from earth!
It's time again for another birth.
Said the Angels to the Lord above,
This special child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play;
His thoughts may seem quite far away.
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent.
We want his life to be content.
Please, Lord, find the parents who will do a
Special job for you.
They will not realize right away
The leading role they're asked to play.
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven,
Their precious charge, so meek and mild,
Is Heaven's very special child.

I was too busy that day to sit and truly absorb this beautiful poem when it was given to me. I tucked it in my wallet, where it remains. Every now and again I take it out of my wallet and read it... tears spilling down my cheek as I think of a very special patient who kept a testimony of faith, hope, and love in her wallet.

Life's a Dance

On the way to the band festival, Robert was full of excitement. He was going to be a helper! Conversation went from band chatter to a very solemn question about tonight's big event - his first school dance.

Yes, he's attending the Special Needs Prom at school tonight.
His question: "Do you think they'll have a waltz tonight? That's 1,2,3,4, isn't it?"
I told him they might play one but I really doubted it. I offered to help him with dance moves (he usually declines my offers) or watch some youtube videos.
He said, "No, I'll be ok."
Then he talked about seeing his friend, whom we'll call David, tonight. He and "David" have been buddies since 6th grade. "David" is a very tall young man, and as we know, Robert is not very tall. Together they look like Mutt & Jeff, but they've always looked out for each other. Robert would worry about David's grades, and David was a bit of protection for Robert.
Alas, this year, David has followed a different path at the high school and stays with the other students on the remediation hall, and Robert is advancing on a different path through school.
So, big happiness will come from their attending the dance together tonight. Robert told me, "David talked me into going to the prom."

...Fast forward to driving home after the festival.
Robert says, "Mom, I've got to be under my blanket for a while. It's a big day."

No problem, I'm thankful he recognizes his need to unwind. So, I turn on my computer and check messages.

I receive one from a friend who tells me: Robert has asked a young lady to the prom!
WHAT? I had no clue!

He has known this young lady a long time, and he knows she only likes him as a friend.
But still, he asked to the prom, YESTERDAY. And he never told me.
If it hadn't been for a dear friend's message, asking what the young lady should wear... I'd never have known!

This status update is long, so let me sum up and say:
I've cried many tears this afternoon.
Tears of sorrow for my son's social skills challenges.
Tears of thankfulness for friends who are kind and who love my son.
Tears as I think of those who are not so compassionate to my son.
Tears of gratefulness for a young lady's kind heart and christian love of a friend.
Tears of frustration because I didn't see this coming.
Tears of inadequacy because Robert said, "I didn't tell you because you're not a guy. We need a guy."
Tears of gratefulness -- for parents who are raising incredible young people.
Tears because there is still so much good in the world.
Tears because Kroger has corsages available at the last minute.
Tears because my son is growing up.

What a day.
I have to head to work and Grandma is coming over to pitch hit. She and Ryann will be taking pictures and keeping me updated.

Robert has learned he must always talk to Mom about these things, that he should have contacted the young lady's parents, that there are many things we should have done. He has had tears in his eyes. He didn't mean to cause a problem. He just wanted to go to the dance, and he wanted to ask his friend to go with him. He's still under his blanket.

I pray he has a good time tonight with his friends. I pray for many blessings for the young lady, and all the children attending the prom tonight. I pray Miss Clairol keeps making my shade of hair dye, because the grey continues to grow!
xoxo

Ode to Autism

I remember when my oldest son was asked to leave our church's preschool. He wasn't bad, he just moved around too much and he couldn't focus on quiet time. He had difficulty following directions, and he needed to lay on things because the pressure on his body helped him concentrate. He was a distraction to the class and the teachers. He has ADHD in conjunction with Autism (not bad parenting) but he didn't get the official ADHD diagnosis til later.

I remember going grocery shopping when my youngest was little and how he screamed in the freezer section, and how he covered his ears. The hum of the freezer motor was too loud for his hearing senses to process. But I didn't learn about auditory processing til later.

I remember cruel remarks from people who saw my oldest son with a chew toy in his mouth when we went out in public. I knew how to provide for my child's needs, but I didn't learn how to stand up to rude stares and remarks til later.

I remember watching my youngest son try to run... And fall down every few steps. I remember when he became capable of walking barefoot, without the support of shoes. I watched his transformation through intense occupational therapy, and he learned to run, later.

I remember a life before Autism... I remember a time when I didn't know what autism was, when it was completely foreign to me.

But that was almost 15 years ago. I've learned a lot since then.

I've learned: My sons are capable of amazing things.
I've learned: My God is with me always as I raise these boys. He is my greatest resource!
I've learned: Rude people are simply rude. It's not personal. I still detest it, but I know they own their actions, and I don't have to let it take me down.
I've learned: More about Autism, Human Nature, and Special Education Law than I can describe here. It's become part of my every-day existence.
I've learned: I must rely on God's promises. I can not do this on my own.
I've learned: I must take care of myself so I can take care of my children.
I've learned: People are inherently good. Sometimes they just need to be inspired.

Communities around the globe are rallying today to create awareness of a cause which affects my life every single day of the year.

I remember a time when no one rallied for Autism awareness. I remember when no wore blue. I remember when no one had blue light bulbs on their houses. I remember when a puzzle piece was just part of a puzzle, not a symbol for a health epidemic.

I'm grateful for the awareness we have today! As people come to understand how autism affects lives, I pray this awareness helps fund autism research so we can reach the 1 in 50. And I pray the cure comes sooner, rather than later.

It's Not My Fault: I Heard It On The Radio...

After I dropped the boys off at school, I was listening to the radio and learned that today is 
Single Parents Appreciation Day. These are my candid thoughts. Reader, beware.

Single Parents Appreciation Day?
Quite frankly, who thought this was a good idea?
Raising awareness?
Just look around folks...  Single Moms and Dads are everywhere.
But you already knew that, so tell me again how this will "raise awareness?"

Single Parents Appreciation Day?
We don't need a special day in our honor.
We don't need another reason to spend money.
We don't need help just one day out of the year.
We don't need a reminder that our children don't have the benefit of two full-time parents.
We don't need a reminder of our children's pain.
We don't need a card.
We don't need a poem.
We can't afford a party or dinner out.

What we need is a nap.
And someone to clean the house.
We need our churches to lift us up.
We need family members to encourage us.
We need our government to see our financial burdens and help us collect child support.
We need school teachers who accept our best efforts and do not marginalize our children's abilities.
We need someone to mow the lawn.
We need a vacation.
We need prayer, miracles, and tangible help every single day of the year.

What? I sound bitter?
No, I am tired. I'm sick of the patronizing comments. I'm fed up with non-committal blather. "Call me if you need anything"... real friends show up at the door, they weren't called. "I don't know how you do it." Yes you do... It's a combination of sleeplessness, responsibility, and sacrifice. What you really meant was: "I'm glad it's not me."

Unless you've personally been there, you will not get it. Being "a child of" a single parent or having a spouse who "travels a lot" -- doesn't count. Don't tell me it does. You can't get it. I couldn't until I was one. And I certainly don't wish it on you.

(Trust me, I know of what I speak. I was a good military wife while being a parent, and my "husband away" trumps yours ---military spouses excluded).

It boils down to this: Single parents either curl up in a ball in a corner and let the state or someone else take their children. OR, if you truly love your children, you parent them, you own it like a boss (at least outwardly) and do what needs to be done.

But wait, what about children showing their appreciation for their parents?
Really?  Every day, all parents should get appreciation.
But our society seems to have forgotten that idea.

So let me say this:
When my sons man-up and do chores, I get appreciation.
When they make do without, and don't complain, I get appreciation.
When they study hard in school, I get appreciation.
When they worry about me, I get appreciation.
When they say "I Love You, Mom," I get appreciation.
When they hug me, I get appreciation.

I'm already blessed with two parenting holidays to celebrate: Mother's Day and Father's Day.
So, thanks for the sentiment, I'm sure it was well-intentioned, but I don't need a third parenting "holiday." I don't have the time, energy, or money to celebrate it.

Prayers for Andrew

This morning I found myself on the floor in my son's room. In front of me was one of his aquariums and in it, his beloved Andrew.

Earlier, I'd taken the boys to school, and returned home for a quick nap before heading to work. Now, the house was quiet. Just the geckos, the dog, and I.

While saying my morning prayers, I'd felt led to wander into my son's room. I thought about this morning. How my son had come to me, not his usual bouncy morning self... How he'd sat on the edge of my bed and although I was barely awake, he had poured out his heart: "Mom, I think Andrew is sick. I don't think what we're doing is working."

At the time, I'd still been groggy after night shift and just a couple hours sleep. I remember sitting up and putting an arm around him and murmuring something. I pray it was encouraging. I do know I told him there was no way I could afford a trip to an exotic pet veterinarian. No need to go into details, but with hospital bills, no child support coming in, and other priorities like groceries and rent, he knew I was right.

He tucked his head, looked at me for reassurance, and went on with his morning routine.

Thinking back, I realize how much quieter than usual he was today. I didn't have to remind him to focus. There was no need for jumping jacks to calm his body. The burden on his heart was calming his mind.

And so, on the floor, on eye level with Andrew, my prayer began:

Dear God,
I know you are the Father of all. I am helpless to do anything on my own, but I know You are capable of mighty things. If it's your will, please heal Andrew. Please let him get well, whatever may be ailing him. Please heal the heart of my oldest. You sent this gecko to my son. You used this gecko (and Lizzy) to teach my son to love... something I was desperately afraid would not happen. I know I've never really liked lizards and snakes and all, but I do love these gecko's and I love my son. Please strengthen Andrew, strengthen Robert, and help me, to do and say the right thing.
Thank you for your blessings and mercy, and being with us through all things.
Amen.

I know it's just a lizard, and there's so very many important things going on in the world... But if you have time today, would you say a prayer for Andrew? and Robert?

Andrew... this morning.

Update 3/25/13:
Our God uses amazing circumstances to bring all of us closer to Him. And his miracles never cease!
Through this blog, and good friends, God connected us with Vet techs, and a Zookeeper at the Salt Lake City Zoo. We were able to help Andrew get electrolytes and clear out his digestive tract and he is back on track. It wasn't easy, but it was a labor of love! We are so very thankful for your prayers and for your concern. We are blessed indeed! 


 

Single. Mom.

I'm a Single Mom. 

Single? Well no, I'm divorced. I was not single when I became their Mom. (It just felt like it).
Single? Well, yes I'm the only Mom in our home.
Single? As in available, unattached, looking for a partner? Well, I guess so. I've been so busy raising my sons and trying to be both Mom and Dad, I've ignored that part of me. 

Until...
Someone flirted with me Saturday! Actual full-blown, flirt: eye contact, conversation... No sloppy come-on, no indecent proposition, just a little bit of light, innocent flirting. The kind that boosts the ego and makes you smile.

But it's been so long since anyone flirted with me, I missed it at first.

I mean, completely over my head, smile politely and move on. Then it hit me. He's cute, He's well-spoken, and He's flirting... with me. So, for a minute, I flirted back. Smile. Chat. Smile. Move on.

Now with my luck, he's probably just out on a prison-release program or attempting to film some sort of "punk'd" video. I'll never know, but I do wish him well, and I thank him for the experience.

As a Single Mom, my life revolves around my sons, my work, church and community events. It's been so long since I've been to a party, bar, or club that I can't remember it. Since my marriage ended, I've met some nice men, dated a couple of them, and I've met some not so nice.

But for the last (almost) 2 years, I've taken a sabbatical from the dating scene. It's not that I'm out of the game, but I've been warming the bench.

It's not that I'm content being alone. To be perfectly honest, I'm lonely. I'd really like to find a nice gentleman to date. In fact, it's part of my prayer life. But I'm not desperate, either. And I'm not praying "for a man"... I could find one of those anywhere. I'm holding out for the real thing.

I know the real thing exists, I see friends living it every day. Not that fairy-tale garbage (Disney lied) but real life give-and-take. It's not easy, but they work at it. But where is he? I've come to the conclusion that if God wants me to meet Mr. Right... he's gonna put him right down in front of me, no questions asked. (Yes, I'm prepared this may take a while).

Enter: February 14th.

It's on everyone's mind. Friends are blogging about it, red hearts festoon store aisles, and dinner reservations are being made.

Here's the thing about Valentine's Day:

I hate the commercialization of love. I always have. For years I've said, "it's nothing but a retail trap" -- stand in line 2 hours for a mediocre dinner in a jam-packed restaurant, and that's how a person celebrates love? I don't think so. Buy jewelry because that Jeweler-with-the-alphabet-letter-name says: "Every Kiss begins with K" -- great, prostitutionalize love. Kisses shouldn't come about because someone hands me jewelry.  (Side note: I do like jewelry... but if it's the Right Man, he'll be kissed for many reasons, not just jewelry).

Single Awareness Day? You gotta be kidding me! I need a day to celebrate this? To be aware I'm single? Folks, I know every day... I'm alone. Thanks, but no thanks. Take the drama elsewhere.

My Valentine's evening will be spent working. That morning, I will have celebrated with my children as we get ready for school. But my sons know I love them. Every. Single. Day.

To those with a Valentine this year, I sure wish you happiness. Truly I do! Enjoy, have fun, party on. But keep this in mind: Love should be celebrated every day. Big ways, little ways, and all ways.

To those without a Valentine this year ... Well, there's no delicate way to put this: The day is depressing. But remember, it's just a day. Turn off the tv, go volunteer somewhere, read a book, take a nap. And don't forget this: You are loved, by Someone who gave His life for you. No greater love exists. Find your confidence in that Love.

As for me, I'm still working on the term, "Single Mom" ... No clue where this path will lead me. But as I face the (sometimes) overwhelming and very rewarding challenge of being my sons' only parent, I have to remember: my existence can not be summed up in a single title.

And my Valentine Resolution? Not to get so lost in my role as parent that I forget to celebrate being a Woman. Single. Fabulous. Worthy. Loved.

Why Can't We Be Friends?

Life and Time often conspire against us, causing memories to be blurred and events forgotten. But as I review Robert's paperwork and reorganize his file, events are remembered. Combine the memories with recent events and I want to offer some reflections on our Special Ed journey.

I homeschooled both boys in their early years. The reasons I chose homeschooling were varied: Merrimack (NH) didn't have public kindergarten, both boys had delays, homeschooling gave us freedom and more time for bonding, they'd been rejected for early intervention in WA state (which I now know was illegal)... and I wasn't ready to trust the school system with my children.

But through Special Olympics, I met a wonderful lady who oversaw the sped program at Reed's Ferry Elementary in New Hampshire. One day she said to me, "Please let me have a chance with your son." And things went well. Not perfect, I didn't know how to get speech for Robert... but the school system put both boys on IEP's and Robert had OT, PT, and accommodations. (Ryann had speech and OT but no longer needs an IEP although he still struggles with auditory sensitivity). Unfortunately, despite a decent school system, my marriage was finally disintegrating. And I moved home to Virginia.

Although the small town to which I fled offered many positives, my sons were now at the mercy of a school system that didn't care... Don't get me wrong, there were some that tried, and some who fought the brave fight... but I was one woman, fighting a political machine. I remember the first IEP meeting... they'd lined up a dozen folks in a small classroom and I guess I was meant to be intimidated. Four hours later I called my best friend and said, "I'm going to be a while"... and for the next two years I learned how to fight the good fight. I joined the Sped Advisory Committee for the county, I pulled in a research team from Richmond... and again, while there are those who tried to help, their best efforts could not give my son what he needed.

Most of you know how I ended up in DeSoto County, MS. Their reputed public school autism program and the woman who loves our children, brought me here. And even though there are bumps along the way, I still say... we have it GOOD in DeSoto County. Robert has Speech (after 3 other states denied him), OT, Social Skills group, transportation accomodations, sensory diet, and other accommodations. My children are blossoming... and we are blessed.

But recently, someone said to me, "I want my IEP meeting to be peaceful". And heck, I sure agree with that statement. I'd like everything to be peaceful. But it doesn't work that way. Sometimes you have to be bold, you have to project an image... to get your children what they need.

When we first got to MS, we had an IEP meeting prior to Robert's admission to school. I think folks listened but they didn't "get it"... perhaps they needed to meet Robert, perhaps they were overburdened (God bless our teachers who are so very overworked and underpaid), perhaps they weren't used to a parent who participated in their child's education process, perhaps.... I had to prove myself.

I'm not sure what the exact answer was, but as I go through the documents in Robert's file, I see an email written about me which was written right after I got here, dtd 1-29-08 and states in part "...in her response below that she has other concerns she feels aren't being acknowledged. From this point on, I will only communicate with her in person with someone else or by phone with someone present." No doubt this was written because I'd been a bit outspoken, been pushing for services.

But even then, my concerns weren't taken into account as they should, when Robert was hit in the face in school, his glasses broken, and I rushed to the school on Feb 4th... to find my baby hurt and upset. Granted, Robert had acted out in the bathroom (and from his perspective he got in big trouble with me) but there should've been safeguards in place prior to the incident. I had asked for them, but it wasn't until this incident, that they were quickly put in place.

And to the school's credit, the other child was suspended. Yet I was told, "this isn't the first time he's tried these attention getting devices", and my response was, "Why didn't you tell me?" I suppose school personnel get so tired of parents not caring, and are overwhelmed by all that goes on, that sometimes things fall through the cracks. But they shouldn't and now it's a line item in his IEP... I will be contacted!

And so, my first contacts with school personnel in MS didn't endear me to anyone. I was bold, passionate, outspoken, and had reached my limits with schools. I wasn't anyone's friend. But I'm cool with that... I have friends. What I was, however, was Robert's Mom.

And can you believe it? The following line item is now in Robert's IEP:

Robert's mother is extremely supportive of his education and maintains great communication with his teachers and support staff. She provides academic and behavior support at home and is concerned for Robert's best educational environment."

Bless them!

Along this journey, I've met several people who would be happy if I dropped off the face of the earth. Not my problem. I've also met people who work hard for our children every day. Even if they aren't my friends, I admire them and am so thankful they are part of my child's life. And I've made a few friends who I love dearly... and thank for their passion and devotion to our children.

My intended message? Don't give up, don't worry about making friends, don't worry about keeping the peace. There may be times where you are your child's only advocate. Learn how to get your message across professionally, always back your position with data, learn how to negotiate, and learn when to speak up when it's needed. And never, ever, underestimate the power of prayer and the promise that Right will Prevail!

Love Never Dies

Long before Andrew Lloyd Weber decided to create a sequel to "Phantom of the Opera" (entitled "Love Never Dies"), I had been teaching my boys to use this saying as a mantra.

When we've had to move away from family and friends? We will miss them, but love never dies.

When there's been a bad grade, or a window broken, or a misdeed? There have been consequences, but love never dies.

When the boys express longing to have had more time with their grandfather? We talk about all the memories of him, and know that love never dies.

Through times of frustration or celebration, arguments or peace, even at times when it seems an impossible task, I try to have a house where love never dies.

And so, when I came home from work and found the giant message in a tiny little cut-out heart taped to my computer monitor... I thanked the Heavens for a love that never dies.

Originally written and posted on facebook April 23, 2010. Sharing via Blog in time for Valentine's Day!

Influences

When my sons and I are out in public and someone asks, "Are they twins?" We usually glance at each other, smile slightly, and I'll answer, "No." Sometimes, the person proceeds to say, "They sure do look alike." Another glance at each other, and depending on our collective mood, I may say, "Actually, they aren't my biological sons, nor are they biological brothers, but they are my sons, and they are brothers." This usually causes the person to pause and look carefully at me, then at my sons. Generally, the next comment is a thoughtful, "They sure do look like you." This causes smiles all around and the short conversation that follows is often my way to promote adoption awareness.

Certainly, at a quick glance, we seem to be a fairly matched set, yet my sons' DNA is from their birth parents, not me. But make no mistake, they are my sons... Robert has a vocabulary years beyond his age, and Ryann seeks justice with a servant's heart. Robert has a northern accent from our time in New Hampshire, Ryann has a southern accent honed in Virginia and Mississippi, yet both have mid-Atlantic inflections much like mine. They are both inquisitive, like a good story, and enjoy history, hockey, and music... just like their Mom.

Like most parents, I've taught them right from wrong, how to tie their shoes, and to turn off the lights when leaving a room... but what other things have I imprinted on their consciousness?

Listening to Ryann read his book about the wreck of the Edmund Fitzgerald, I realized I've given my boys a love of the ocean. Because of my gravitation to the sea, we read books about historic storms, shipwrecks, and floods. They know the impact of the Hurricane of 1938, the adventures of Misty of Chincoteague, and know there are treasures and stories off the shores of the Graveyard of the Atlantic (the Outer Banks) and the Pacific Graveyard (Cape Disappointment, Washington). 

A few years ago, they were playing football in the backyard when I heard Robert say to Ryann, "You be the Pittsburgh Steelers, I'll be Virginia Tech." They were little, and didn't understand the difference between pro and college ball. The memory still makes me smile, but it illustrates again how our interests influence our children.

Growing up in what-was-then rural, eastern Virginia, I knew a world of farmland, marshes, and the sea. But through stories, my own father imparted a love for the mountains of his beloved Montana. He would tell stories of growing up in Big Sky country, bringing the mountains to life in my imagination. He shared his love of horses, the outdoors, and gardening. 

When people come to visit, I'm not content until I fix them some coffee, some cookies, or a meal... This is because my Mom, and her Mom, did the same thing. They always opened their humble homes to friends... and made them feel welcome. My Mom would not let anyone leave without feeding their bodies, and dare I say, their spirit. My mom made sure I knew the joy of a good book, the great music of the 1950's, and she taught me manners and etiquette.

Who I am today is a result of God's unconditional love and my family's influence. I think it is that way for all people, whether the family influence is good or bad.

I'm a single parent. There is only one of me. I can only do so much. I'm getting older. Sometimes I get tired, and I lose patience, and I feel disheartened. I pray my sons do not take these negatives to heart. 
 
Sometimes the thoughts overwhelm me:
Am I doing enough? 
Is my influence a good one? 
What am I teaching them? 
Are they ready for this world?
Am I planting strong family roots?
Do they know I love them?


I pray my sons see the positives, feel the positives, know the positives. I am not ashamed to let them see me on my knees in prayer. I admit my mistakes as I realize them. I challenge them to search for justice, encourage them to be positive, advise them to turn to God in all things, and I always tell them to Give Thanks. 


I humbly whisper to the Heavens, "Help me be a good mom. Let them come to know You deeply. Let them be safe and know they are loved. Thank you for letting me be their mother. Let my influence be a good one."

Cape Henry (Virginia Beach), Virginia. 2006

A Declaration of Independence

A few days ago, I made the following post on Facebook. Yes, it's a testimony, but it's more than that, for it's also my declaration. Life is different. Life is good.
Change.
Hope.
Thanksgiving.
Peace.

"There is no way we can be all things to all people. There is no way we can make everyone happy. There is no way we can do all things on our own. 

Being a Survivor nearly killed me... took me to a deep, dark place inside where my only champion, my only hope, was Me. Failure was not an option. I fell further away from God, and deeper into myself. My vision was clouded by despair and hopelessness, hurts, stress, exhaustion, and loneliness. And where did that lead me? No where good. I set myself up for failure. I am imperfect, like every soul on earth.

But this summer, my life took an amazing, miraculous route. At a time when I felt I had hit rock bottom, when I fell on my knees, when I took off my Survivor charm, when I truly understood: "I Cannot Do This On My Own.... I Give It All to God" then Love and Peace took over!

My life changed. My job changed. My focus changed. More time for my children and I. More prayer and meditation. A life truly focused on God and His word and His ways. I said, "Lead me, Help me."

It's been an amazing ride these last 7 months. He has taken me places and changed things inside of me. I am actually stronger and more at peace from letting go of the negatives that held me down. I am healing, getting stronger, focusing on what really matters. That doesn't mean it's "easier" but I do have peace.

I'm not sure where exactly He's leading me, but I now know, I'm really not alone. Those negatives and past hurts that haunted me are gone. I know He will be with me. And I know he's put some amazing people in my life to help me (as I pray I can help them) when life's trials weigh me down.
Thanks for letting me get this off my chest. I know this isn't the popular type of facebook posts where folks spout off about politics or drama. But it was heavy on my mind today. I just wanted to say "Thanks for loving me, Thanks for loving my children, and Thanks for being with us on this journey." 

 

 

Celebrate!

As the Miss America pageant took place tonight, the global autism community was cheering on Alexis Wineman, Miss Montana.

Alexis became one of the most popular contestants of the pageant. Not only was she named a finalist, she was also the youngest competitor at this year's pageant, winner of ABC's People's Choice award, and the first contestant in pageant history (to admit being) diagnosed with Autism, specifically PDD-NOS. (Pervasive Developmental Disorder-Not Otherwise Specified).

A miracle!
A vindication!
A winner!
A beauty!

Yet in all the excitement, my mind kept wandering to thoughts of her parents.

According to online articles, they were told their daughter was autistic 7 years ago, long before she ever entered a beauty pageant. 
They knew something was different about their child. 
They've heard the doctor's diagnosis. 
They've had to hold to console their child after she was bullied. 
They've had to endure melt-downs. 
They've had to deal with school concerns.
They've had their parenting questioned. 
They've had sleepless nights.
They've had to teach their child to exist in a non-Autistic world.
They're two parents doing the best they can for their family and their special needs child.
They aren't glossy or glamorous.
They've struggled.

They are "one of us"...

70 years ago, Alexis' parents would've been advised to put their autistic daughter in an institution. This evening, Alexis' parents saw their daughter in a tiara and the Miss America pageant!

I have a secret to tell you:

Tonight I celebrate Miss Montana, but I'm also celebrating her parents!




Sources:
http://www.abilitypath.org/love-laugh--live/family-fun/alexis-wineman-miss-montana-2012.html
http://www.missamerica.org/news/press-releases.aspx?id=625
http://www.people.com/people/article/0,,20664029,00.html
http://abcnews.go.com/blogs/entertainment/2013/01/alexis-wiseman-miss-montana-first-autistic-miss-america-contestant/
http://www.greatfallstribune.com/article/20130111/NEWS01/130111005/Miss-Montana-Alexis-Wineman-makes-history-first-Miss-America-contestant-autism

Big Brother

Growing up, I longed for an older brother. In my dreams he would've been a protector and advisor. He'd have taken some of the burden off me (I'm the oldest child in my family), he'd have guided me through awkward social situations, helped me study, and eased some of life's challenges. Obviously, my dream could never be a reality.

Many decades later, I'm raising two sons. In the natural order of things, it would be safe to assume my 16 year old plays the role of Big Brother to my 13 year old.

But never assume anything, especially when considering a special needs family. My 16 year old is diagnosed autistic: a compilation of Asperger's Syndrome, Sensory Integration Disorder, ADHD, reading comprehension issues, and sparkling brilliance. He is a delight, but he has not been able to take on the traditional authoritative role reserved for a family's oldest child.

Instead, the role of Big Brother has fallen on my youngest son. He is the organized one, the Communicator, Mentor, and Coach. When I'm at work, he makes sure things are ok at home: dinner's in the microwave, chores are checked off each boys' list, alarm is on, showers taken. When my oldest misses social cues, his younger brother clues him; When my oldest "isn't sure" what someone said, my youngest chimes in; when my oldest leaves things scattered or needs an activity break, my youngest reminds him to be focused. It does not always work smoothly. There have been times when my eldest son says, "Why does he act like the big brother? I'm older." And times when my youngest is simply tired of shouldering the burden. (He has his own sensory issues, including Auditory Processing Disorder. Sometimes, one more noise, sound, or word is too much to tolerate).

So, it's not easy. Sometimes there is chaos and impatience. But it's not "bad" either. There is love and commitment. There are priceless bits of character development. Siblings of special children are often more compassionate, tolerant people.They are warriors and defenders, they develop thick skin, and excellent coping skills. They often champion life's underdogs, and they learn early that Disney lied: it's not all happily-ever-after, but it can be good.

However, our little family's dynamics were recently altered, rather quickly. My youngest has had reconstructive surgery of his right rib cage. For several months, he can not pull, push, or lift ANYthing. He must be careful not to fall, or to get jostled in a crowd. And he fatigues easily. As he recovers, he must fully rely on his older brother to cook dinner in the microwave, to carry clothes for him, to open the door for him, to carry his toys. Physical limitations are not easy for an independent 13 year old to accept. But in this mix of healing energy and angst, I also sense: Relief. From both of my sons.

For my youngest, some of the burden has been reduced. And my oldest now gets to take on the role of Big Brother. He must put down his coins and geckos and focus on the task at hand. He must protect, nurture, and care for his brother. It's time to take the next steps in maturity, to become the caretaker of himself and someone weaker than him. His egocentric universe is going to be under attack, and he may rebel a bit, but he will become a better person, and brother, in the process.

The next few months promise to be ones of healing and rest, they will also be ones of challenges and trade-offs. Possibilities abound and Hope carries us forward.