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A New Normal

One Mom’s Experience with Sensory Integration Dysfunction
By Jennifer Shaw

April is National Autism Awareness Month.  Sensory Integration Dysfunction is closely associated with autism in that many autistic children have some form of SID.  To date, the medical community is unclear of the exact connection.  SID is also often misdiagnosed as ADD or ADHD.  The following is an editorial from singer/speaker Jennifer Shaw:

I was the mother of two beautiful girls and was thrilled to add a son to our family.  After a difficult and dangerous pregnancy, we were especially thankful that our baby boy, who we named Toby, was born healthy.  He seemed to be a very unhappy baby compared to our girls, but we hoped he would grow out of it.

The first indication that something was out of the ordinary was when we could not get him to eat any food.  I nursed him without a problem, but when we introduced baby foods, it was a daily struggle that we lost.  We also noticed that he never babbled or made any sounds and he rarely smiled.  Eventually it was clear that he was very speech-delayed, but because he had suffered from repeat ear infections which caused clinical deafness during his first year, we attributed a lot of his mood to pain and hoped that when his hearing improved, his speech would come along.  After surgery on his ears, his hearing did get better and his infections went away, but he still did not make any sounds.

During Toby’s second year, my father was dying of ALS and that took much of our emotional energy.  But Toby’s behavior was becoming more and more extreme.  He wouldn’t touch anything or play, he did not want to be touched, and he was terrified of being messy or being anywhere near things like grass or sand.  A drop of water on his clothing would make him scream.  It became really frightening and we did not know how to help him. 

When Toby turned two, we started him at a therapy school for speech delay.  There was an occupational therapist on staff and she was the first to diagnose Toby with Sensory Integration Dysfunction (also known as Sensory Processing Disorder).  Toby’s brain was not interpreting sensory input correctly. People with this disorder can suffer in a variety of ways, but in Toby’s case, he was extremely hyper-sensitive to touch of any kind.  Food in his mouth, clothes on his skin, crumbs on his hands were all completely intolerable to him — he thought they were actually hurting him.

Toby began play-based occupational therapy, speech therapy, some physical therapy (because he didn’t touch things or play and had poor balance, his muscles were very weak), and food therapy. Within two months my son who had previously uttered no sounds said, “I love you, Mom.”  Within a year, Toby’s progress was nothing short of miraculous.  He is now five and was discharged from all private therapies a year ago.  He never had to have any medications or drug therapies.  Although he still has some minor sensory issues, he has learned to cope with those challenges and he is now considered a typical child.

I am a songwriter and recording artist, not a doctor or therapist, but we learned a lot of things in our journey with SID that I share with people who suspect this condition in their own children. There is so much hope if you know where to look, and although Toby’s outcome is not typical, there is help for every child with this diagnosis. So here’s my advice:

Do not ignore the signs even if you don’t know what they mean.  This is by no means a comprehensive list, but some of the symptoms of SID are speech delay, poor coordination, poor balance, avoiding touch or seeking touch in extreme ways (running into walls or falling down on purpose, running into people), extremely picky eating or extremely messy eating, irritability or a “difficult” personality.  SID is often misdiagnosed, especially in older children, as ADD or ADHD.

Do not wait, even when your pediatrician tells you to. After everything we went through with Toby, my pediatrician (whom I love and respect) told me that she gave me the wrong advice by advising me to wait for Toby to catch up.  This is what most doctors are taught, and while it is probably true for many problems, SID is not one of them.  Treatment is so much more effective before the age of three that you cannot afford to waste time.  If you suspect something, trust your instincts and get your child tested by an occupational therapist. If they say there’s nothing to worry about, fine, but if not, you have not wasted valuable time that your child needs for therapy.

Get educated. Find out all you can and do everything in your power to help your child on a daily basis at home.  We used to laugh about “our life as therapy” as we tried to integrate all Toby’s therapies into everything we did.  An excellent book on this topic is The Out of Sync Child by Carol Stock Kranowitz.

Get help. There is a federal program for developmentally-delayed children from age 0-3 available in every state.  It goes by many different names – ours was called “Help Me Grow”.  They will do testing and help get your child into therapy programs, most of which are free if you qualify. Toby’s therapy program literally changed his life and ours.  You can call the special needs department at your local school district and they should be able to tell you who operates the program in your area.  After the age of three, help is available through your local school district. Take advantage of any therapy coverage on your insurance plan.  Talk to your therapists about what you can do at home, watch the therapy whenever possible, and ask a lot of questions.  We were able to overcome a lot of Toby’s food issues only because we learned techniques from our therapists.

Re-define baby steps. This is not a quick fix.  For example, Toby was literally afraid of food. We were not usually able to get him to stay in the same room with us while we ate.  And sitting down and eating a meal was out of the question.  So first, we worked on getting him to be with us in the room at meal times, eventually coaxed him to sit at the table, then got him to allow us to put food on the plate, then he learned to touch the food with a fork, then he touched it to his tongue but didn’t eat it, etc.  It was a long, frustrating process, but my son eats a healthy diet now and the simplicity of a family meal has become a true blessing in our lives.

Get support. SID can be very lonely and frightening.  Our church was an amazing support to us and truly held us together at times.  I met so many parents of special needs children at the school and it helped us realize we weren’t alone.  They were also a wonderful resource of ideas as we all talked about what was working or not working for our children.

Don’t give up. SID can be overwhelming and confusing.  It can be hard to navigate the system.  Every therapy will not work for every child and you will need to be careful and wise about your choices.  Take comfort in knowing that there is help and things can improve.  You are your child’s best advocate.

SID makes family life difficult, and it can be very hard to watch your child struggle.  But there is hope and help, making positive results very possible.  With persistence, we can help our children cope with their world and enjoy their lives, as we enjoy the blessing that they are in ours.

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For more information on Jennifer Shaw, visit www.JenniferShaw.com.

Jennifer’s first radio single from her new CD, LOVE BROKE THROUGH, has already topped the national worship charts. Jennifer has been interviewed on several national television shows as well as radio stations across the country.
Schedule an interview with Jennifer today!

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Follow Me Out: Reflections from an Ex-Abused Spouse

Marie with husband Gordy Martin

Watching her on stage, no one knew that singer/actress/musical theater star Marie Barlow Martin was an abused spouse. But the reality is, domestic violence happens even in seemingly-stable Christian marriages. Now years later, re-married to producer/songwriter Gordy Martin, Marie has dedicated her talents to singing inspirational praise & worship music and helping women find the courage to tell their secrets.

By Marie Barlow:
Of all the roles I have played in my career in musical theater, my favorite role was that of Eliza Doolittle in “My Fair Lady.” When Eliza exclaims, “The difference between a lady and a flower girl is not how she behaves but how she is treated,” I knew exactly what that meant. Because at the time I became Eliza on stage, at home, I was living as the victim of domestic abuse.

October is National Domestic Violence Awareness Month, and I have a burden for women who share my story. Statistics are startling, but having lived through it, not surprising. On average, a woman in the United States is battered by a partner every 12 to 15 seconds. Up to six million women are believed to be beaten in their homes each year. And over thirty percent of all homicides of women in America are committed by intimate partners. I have vivid flashbacks of the nights of terror, wondering at times if I would live or die – often wishing for the latter. Spending nights hiding in my locked car – huddled in the back – the safest place I could find. Praying out loud to God –as violent hands gripped tightly around my neck – that He would send his mighty angels to protect me in that moment of surrender to my assailant.

I had not told anyone of my circumstance, and looking back now, I realize what a mistake that was. But the chaos of such a life began to seem normal. And I began to believe that I didn’t deserve better treatment – that I was worthless and that it was somehow my fault. The most influential and important voice in my life at the time was telling me I was nothing but a lowly flower girl…and I believed it. And in virtual isolation, who was I to tell? Who would believe me anyway? After all, my husband and I faithfully attended bible study and fellowship several days a week. He was liked by everyone. To the few who knew us in public, we were a fine pair, yet in the privacy of our darkness, we kept the secret locked away.

I remember in the middle of rehearsals for a Gilbert & Sullivan production, my husband was in such a rage that he cracked one of my ribs. I covered it up. I wrapped my ribs as tight as possible so I could stand and breathe correctly enough to hit the high notes. Although I was in terrible pain, the show went on. My husband was sorry, and my secret was kept.

Another night during one of his rages, he had me on the ground and began choking me. I felt myself blacking out. As I was going into darkness, I remember clearly thinking, “He’s finally done it. He’s killed me.” It took several years after that for me to gather the courage to ask him to get help. He refused, and that was my exit cue. I could finally sing as Eliza did, “…I could have spread my wings and done a thousand things I’ve never done before…”

So on the occasion of National Domestic Awareness Month, I want to talk directly to women who are living in an emotionally or physically abusive relationship. TALK ABOUT IT! There is power in sharing what is happening to you. It doesn’t matter who you share it with – a pastor, a counselor, a friend, a family member or even a stranger. When you share your struggles, you become stronger, and you are able to see things in a different way. The power of the abuser is to isolate you so that you will remain weak and under his or her control. The way to counter that is to come out of isolation. Shame keeps you in seclusion, but the shame should not be on you. My personal faith in a living God who loved me and wanted the best for me, gave me the strength to get out of that pit of loneliness and despair and gave me the shelter I so desperately longed for.

Like Eliza, when we surround ourselves with people who tell us we are lowly ‘flower girls,’ we begin to believe it and behave as such. But surround a girl with people who remind her she is the daughter of a loving Father, Creator of the universe, and she will, likewise, take on that role. If you are living in an abusive relationship, I beg you to hear God’s voice speaking through me directly to you today. Follow me out! You are a Fair Lady, fearfully and wonderfully made in the image of almighty God. You can be free of your fears. You are loved, you are cherished. Find help today. God has a better life awaiting you.