Tag Archives: autism spectrum disorder

When Life Isn’t Perfect

My smiley boy at 5 months.I had been 20 for a month when I married my high school sweetheart.

I was 24 when our first child was born. A beautiful 8 pound baby boy.We were thrilled!

Just like any other new mom, I began to imagine what life would be like now for our little family and I had big dreams for our sweet boy.

Our beautiful daughter was born three years later.

A boy and a girl. Our family was complete.

Life was perfect.

Or was it?

After our son was born, I quit my job as a hospital social worker to be a stay at home wife and mom. It was what I had always wanted to be—what I felt I had been born to do. In fact, I used to say as a teen, that when I grew up, I wanted to be a “baby factory” with a house full of kids.

  • That was before I knew about the reality of childbirth. <wink>
  • That was before I knew that having children is like walking around with your heart outside your body all the time.
  • That was before Asperger’s.

Watching our son grow and discover his surroundings was a thrill for me. I saw how bright he was. As an avid book lover, I reveled in his love for books and words. By the time he was 14 months old and putting 3 word sentences together, I was convinced we had a genius on our hands!

Not only was he a genius, but he was also easily frustrated. He had a terrible time getting to sleep (Thanks for nothing, Dr. Ferber!), and when he got old enough to take off his clothes without my help, he did. All of them. And often. And at places like playgroup. Yes, I know he was 3, but none of the other kids were doing it.

I just thought he was precocious. And as a first time mom, I had no frame of reference for anything different.

When our son was three and our daughter was 3 months old, we moved from our home in North Carolina, to the wilderness of Texas, where it was 100 degrees every day and where we knew no one. I felt so completely alone for the hours that my husband was at work. This was not his fault, but nevertheless, I struggled with feeling isolated.

Something happened after we moved. The precocious genius boy became more than easily frustrated; he became inconsolable when things did not go his way. He was angry. He would fall down in the middle of the Wal-Mart, boneless, screaming. He would bite. He became fixated on the digestive system of the human body. He would take his shoes off at preschool and refuse to put them back on. He kicked the teacher. He would completely meltdown whenever his baby sister would start to cry—hysterically, sometimes—while screaming, “Mommy!! Make her stop!!”

I blamed it on his constant ear infections or the fact that he was tired because he would fight naps and bedtime.

Many days, there we would be, all three of us crying. We would cry what seemed to be endless puddles of tears.

I was convinced that I was a bad mother.

I felt I could barely give our daughter the attention she needed because I was constantly needed to soothe and reassure our son. It was my fault because I was depressed after our move,  and our son was feeding off my terrible emotional state. I would pray, begging God to help me be a better mother.

Some days, when my husband would come home from work, I would simply hand off the kids and retreat to the bathroom where I would sit comatose in the bathtub and cry. I would then feel guilty because my husband had worked all day only to arrive home to crazy chaos, a messy house, kids in tears, and a wife who was an emotional wreck. (My husband is an amazing guy.)

On bended knees by my bedside, I would weep. And pray. And I would give my worries to God only to take them back.

To say it was a difficult time in the life of our family would be a gross understatement.

We were in survival mode.

Recently, I was asked how I have dealt with having a child with Asperger’s. Based on what I’ve just shared, sometimes not so well.

Here’s how: But God.

2 Chronicles 20:15
…This is what the LORD says to you: ‘Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God’s.

Psalm 9:18
But Godwill never forget the needy; the hope of the afflicted will never perish.

Psalm 66:19

…but God has surely listened and has heard my prayer.

Psalm 73:26
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.

Acts 2:24
But Godraised him from the dead, freeing him from the agony of death,  because it was impossible for death to keep its hold on him.

Acts 7:9
“Because the patriarchs were jealous of Joseph, they sold him as a slave into Egypt. But God was with him…

Acts 26:22
But Godhas helped me to this very day; so I stand here and testify to small and great alike.

Romans 5:8
But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.

2 Corinthians 7:5-7

5 For when we came into Macedonia, we had no rest, but we were harassed at every turn —conflicts on the outside, fears within. 6 But God, who comforts the downcast,comforted us by the coming of Titus…

But God. God is perfect.

God, in His infinite grace and wisdom, carried us through that early time. He carries us today and He will continue to carry us, and our son. Always.

We walked through the diagnosis process at age 5, and I mourned the loss of the dreams I had when I saw our son for the first time. We navigated special education and IEPs, worried about the lack of social skills and friendships, wrestled with treatment choices for our son, major sensory issues, and ultimately chose to homeschool our son starting in 9th grade.

Along the way, God has sent us many wonderful people to encourage us, to help us and to help our son navigate through this world, which, to the person with Asperger’s can be like navigating through a mine field.

We’ve worried and wept and prayed. We’ve clung to God’s Word and His promises. We know that God, who created our sweet boy, loves him more that we ever could.

“For I know the plans I have for you…” (God’s plans, not mine. His ways, not mine. His dreams, not mine.) “…plans to prosper you and not to harm you. Plans to give you hope and a future.” ~Jeremiah 29:11

We have been given an amazing child to love! A young man who is funny and very bright. Sensitive and kind. We have celebrated so many victories and we have watched our son grow and learn and work around many of his challenges. I cannot imagine a more wonderful son than the one God has given us, a son who brings us so much joy.

We put our hope in God’s plan. We realize that our life will never be perfect—no one’s ever will. It will never look like the lives of families who do not live with autism. And that is okay. It is not supposed to.

So, what do you do when you realize life isn’t perfect?

  • You reach up and reach out.
  • Accept help. Look for help and learn to ask for it—an incredibly difficult thing to do and a huge lesson in humility.
  • Accept that you are not in control and trust that God, your loving Father, is. Trust in His plan.
  • Love.
  • Find joy.
  • Weep. Laugh.
  • Pray. Meditate on God’s Word.
  • Learn.
  • Hope.
  • Dream.

Yes, dream.

I still have dreams for my sweet boy. They just look different.

Just like my wonderfully imperfect life.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. ~Romans 15:13

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Filed under Autism Days, Faith, Family, Inspiration, Lessons, Parenting

Silent Celebration

I turn around and you are gone.

I begin to look around, sure that you had left, that you had had enough.

Scanning the crowd, I suddenly spot your curly mop.

You are not making a beeline toward the door to escape the thing you hate.

No.

With a lump in my throat, and a warmth in my cheeks, I see that you are part of the circle.

Of people.

I feel the prickle of a tear rising up, along with pride in my mother’s heart, as I realize you have chosen it.

A thing you never choose—to be part of a crowd.

You are talking.

Participating.

Smiling. Laughing.

Curiously, you look at ease there. An ease I never imagined to see.

Can you know how proud I am of you at this moment? Can you know how much I love you?

Others, for whom this mystery called “social interaction” comes so naturally, can’t possibly begin to understand why this is such a sweet celebration.

But I know. I see. I smile to myself and swallow the lump.

And I sit back, in my silent celebration, whisper a prayer of thanks, and watch you blossom.

 

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Filed under Autism Days, Poetry

Autism Awareness Month

This is late in coming, but I’ve had some trouble finding my inner-blog for a while and I still wanted to get the word out there…even though it is the end of April!  But I hope y’all will appreciate my feeble attempt to share what is a big part of our lives with you! 

Fourteen years ago, our lives changed forever…we became parents to the most beautiful baby boy ever born.  Five years after that, our world was rocked in a way I will never be able to adequately describe here.  We have been blessed beyond measure and experienced the depths of sorrow.  We have celebrated victories and walked through challenges.  We have cried, but more often we have laughed.

In April of 2000, our son was diagnosed with Asperger’s Syndrome, a high functioning form of autism.

April is Autism Awareness Month

So, what, exactly, do I want you to be aware of?  What do I want you to know about my son and others like him?

  • 1 in 150 births are affected—this makes autism more common than pediatric cancer, juvenile diabetes and AIDS combined.
  • 1 – 1.5 million Americans are living with autism
  • autism is the fastest growing developmental disability
  • every 20 minutes, a child is diagnosed with an autism spectrum disorder
  • autism is disproportionately more common in boys than in girls
  • the cause, though often speculated about, is unknown and there is no cure

People with autism experience challenges in three primary areas—social interaction, communication and repetitive behaviors.  These challenges vary in severity from mild to debilitating.  There is a huge amount of information on the web now about Autism, PDD, and Asperger’s Syndrome.

What I want people to remember most of all is that people with autism are people.  People who want to be loved, understood and accepted.  People who have gifts and talents to offer the world. 

This is a video I made last year for Autism Awareness Month…thought I’d share it here again.

 

 

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Filed under Autism Days