THE BRIGHT THREAD OF AUTISM

As I sat on the small stool in the hospital assessment room, time seemed to stand still.  Here were three women around my age, a Clinical Psychologist, an Occupational Therapist and a Speech Therapist, looking somewhat bemused, yet sympathetic, in front of me, quizzically seeking my reaction to the words which had just been spoken by the Diagnostic Clinician.  “Sally, Andrew has Autism, High-Functioning Autism.”  The words hit me like a train approaching me on the railway lines with nowhere for me to go or hide. 

“AUTISM…Autism…Autism.  That’s a scary, loaded word,” I thought. 

“Jenny, what does that mean?” I posed, rather hesitantly.  Jenny Gibbs, a very proficient and highly experienced Child Psychologist, slowly explained to me--“It’s a sensory condition where Andrew has been wired differently from other children. It means he has obsessional play, he doesn’t respond to emotions, and indeed cannot read emotions as we do.”  “What a package,” I thought.  And to think that this had been dealt to me in a matter of ten minutes, ten minutes which would turn my life around forever, unbeknown to me at the time.

I turned around to see my second son, Matthew, aged nine months, quietly sitting on the floor, playing with the blocks.  Andrew, aged two, was on his belly, as usual, doing rather strange things with Thomas the Tank Engine--gazing intently at the wheels going backwards and forwards as he tugged on a single carriage. What an easy child, strangely, so easy to please that I could leave him alone for hours on end to entertain himself.  Hardly speaking, he would grab me by my forefinger and drag me to touch something he liked, most often something that could spin in circles.  A gentle boy by nature, he was the dream child at the young age of two. Would this now change, I wondered?  Would I have to deal with a boy curled up in a corner, screaming and shouting unintelligibly for wants I could not even recognize?  After all, this is the picture so many of us have of autistic children.

On my way home, the questions continued running around in my mind. At least I could go into ‘automatic’ and drive my car and think at the same time.  What do other people do when they have a diagnosis for their child or baby?  They told me at ante-natal classes that there is less than 1% chance that I would have a child with Special Needs.  Guess what, I hit the Jackpot! 

“How could you do this, God? I cried. What on earth is going on?  I’m already tired. At the age of 36, I have two babies under the age of three--isn’t that enough for any person to cope with?  What have I done? Did I cause Andrew to get Autism while in the womb?

Arriving home that day from the hospital, I was still in automation for several hours afterwards. I didn’t know how to cry. I got on the phone.  I called my mother-in-law first. The tears rolled. We were both stunned by the news. Then, a few hours later, Robin came home. What happened next was a defining moment I shall never forget. As Robin held me in his arms, saying it’s going to be okay, I felt a supernatural power come into me that I have never felt before, nor have felt since.  It was a physical encounter, quite unique and extraordinary.  It was the Lord’s Holy Spirit empowering me to mother this child of mine who has Autism.

As a Christian for 25 years, there was one question that burned deep in my heart, “Does one bow down before such a diagnosis, or does one ‘conquer’, as we are so used to hearing from the pulpit? No doubt, this would be put to the test inside the “Unknown Package” of Autism.

The following days, weeks and months rolled by, and I decided to get to work.  I said to myself, “Sally, get to know this condition inside out. You are going to be the expert in this condition, like no other person you know. You are going to beat this thing with all the strength God gives you. Yes, you will be tired; you will hate this condition for its narcissism and at times mind-bending obsessionalism. You will also recognize that this condition is “A bright thread in the rich tapestry of life”, to those who can see the Silver Lining in those dark filled skies.”

How true those words have been, almost like a prophetic prayer in the dark hole of my heart and mind. Yes, the above has been fulfilled, and so much more. Throughout the past 12 years that diagnosis has thrown me into a realm I would never, ever have considered as a normal Christian woman, living out a normal everyday life. That is the realm of mental health-- psychology, psychiatry, and latterly, counseling.  It has thrown me into investigative work, trying to reconcile the spiritual with the psychological, mental health conditions and brain chemistry, sin versus physiology. 

It has grown my heart in grace and compassion to the degree that I can now work with adolescents and adults as a Workplace Chaplain, identifying mental health concerns, real or imagined. I have grasped Autism to the extent I can speak on the subject.  I have met, sympathized with and even mentored mothers with new diagnoses of Autism in their families.  I can speak confidently with clinicians at all levels, counselors and therapists, and other professionals regarding not only mental health issues, but other issues of concern regarding human nature per se.

There has been a Silver Lining in my cloud. Did I ask God for a purpose? Yes, and I have received much more than I had bargained for. He has drawn out gifts in me I never knew I had. Yes, I still struggle with depression, which is the carnal sense of loss I still carry around in this earthly body of mine, and unbelievable tiredness at times.  Not surprisingly, it has not been an easy road and I have since discovered my two other children are also in a mild way on the Autistic Spectrum, having ADD and Dyslexia. My journey is not yet finished, but God has been with me all the way, and still is, on this very complex and fulfilling journey that He has pre-ordained for me in His purposes.

What about Andrew?  Where is he at this juncture?  We have a quiet, yet lovely, 14 year old son, who has been on this unique journey with us. Our family personally knows all the countries and capitals of the world, their flags, and their populations, which countries are rich and which are poor, the names of the world’s rivers and mountains, and more recently, all the bridges of the world. 

We have traveled with Andrew into his obsession with all the trains which have ever been invented, and their speeds. Andrew also knows most of the aircraft which have been invented, and also boats. He absolutely loves the outdoor life, enjoying walks along the Waikato River and adores the mountains of New Zealand. Andrew is a studious, conscientious boy--a peaceful boy, who doesn’t like contention. He has the Lord in His life and has been baptized. He is very faithful to His Lord and we can see that this will probably last through his whole lifetime. Andrew loves his High School, where he is in the Support Centre.

“Mum, I want to stay there till I’m 21, I like it so much, and then I want to live with you and Dad all my life”, he says to us.

What a joy this son has been to our lives!  What wisdom and simplicity God has placed in our ‘bright thread’ in life.

SALLY BOOM
Hamilton, New Zealand
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Why Not Me?

A mother shares about coping with disabilities.

People often ask me how we manage to stay sane in our busy household of nine, and my answer is always the same, “It’s a lot of work, but it’s also a lot of fun!” At this point they usually look at me with a mixture of sympathy and disbelief written across their faces, and I just smile and move on.  If the fact that we have seven children between the ages of ten months and twelve years doesn’t shock them first, they are almost always rendered speechless when they realize that all three of our boys have autism.

Long ago I read the infamous poem “Welcome to Holland” which details a new mother’s experience of giving birth to a baby with a disability when she expected a “normal” child. Although it touched me deeply, at the time I couldn’t imagine being that mother. I was nineteen years old, married and already pregnant with my second child. Little did I know that in a few short years my life would change dramatically as one by one my sons were diagnosed with various forms of autism, and my daughters with other neurological disorders. It didn’t feel like “Holland” to me, but more like “Welcome to Mars” instead.

Our oldest daughter Erika was vaccine injured as a toddler and experienced seizures, extremely high fevers, and immune system dysfunctions. As she got older, her symptoms manifested as attention deficit disorder, anxiety, and obsessive-compulsive behavior. She’s a bright and lively twelve year old girl who still struggles with these problems, which at times can be all consuming. Elijah is ten now, and although highly intelligent, he has high functioning autism. He is very verbal, but his poor articulation can be hard to understand at times. He also struggles with obsessive-compulsive behavior, and motor tics which he cannot seem to control. Nicolas also has autism, and is the most severely affected. He is eight years old and still non-verbal. Although he tries to say a word or two every now and then, his severe apraxia makes it difficult for him to articulate what is on his mind. Even though communication is tough for him, he is a happy and loving boy with a sharp mind inside!

Leah is our sweet seven year old, and thankfully she doesn’t have the same degree of challenges as the others, but she still deals with a neurological condition called sensory integration dysfunction. People with SI have trouble regulating their responses to incoming sensory input. It is a nervous system condition that makes it hard for the person to regulate their behavior when faced with the everyday things that we all encounter. Lights seem too bright, clothes seem too tight, noises too loud, and regular family chaos can be overwhelming. All of the boys have sensory integration dysfunction also, as it is one of the defining characteristics of autism. Jacob is four years old, and his autism falls into the moderate range, meaning that he is somewhere between Elijah and Nicolas in terms of severity. He speaks well, but his language is often scripted and repetitious. He loves music and has an excellent memory for detail.

We have grown in knowledge over the years, and after a lot of prayer and biomedical detoxification, we are happy to say that our youngest two girls seem to be developing typically thus far. They are natural, unvaccinated, and healthy. Sarah is two years old, and is speaking well above age level already for which we are grateful. Little Trinity is just ten months, but is a calm and happy baby. Like Sarah, she is not suffering from any of the horrible rashes, jitteriness, or uncontrollable fussiness that the others experienced. Sometimes I still cannot believe she sleeps seven or eight hours at this age. The others were not sleeping that well for years.

I have learned that most of the world thinks it is absolutely crazy to do what we are doing. Without fail, people always ask me why on earth I continue to have children when so many things are “wrong” with our other children. There is persecution for homeschooling and home birthing. There is persecution for not vaccinating our children with poisons disguised as “immunizations.” There is persecution for living naturally and organically, which is “different” and costly, and there is definitely persecution for having more than four children in today’s world. Sadly enough though, the persecution we face for continuing to give birth to children with disabilities has been of the worst kind. It leaves a sour taste in my mouth, and reminds me so much of the eugenic attitude that was embraced by many in the past. Unfortunately, that spirit is very much alive today, and people are continually proving it by telling me “how they feel” about us.

If I sound bitter, I don’t mean to be.  Serving Jesus Christ is still the main focus of my life although my journey has taken many twists and turns. Long ago I prayed for an answer as to what my ministry should be. I felt called by the Lord to do something great for him, but agonized over what special ministry to become involved with.  At the time I believed the Lord was calling me into pro-life work, but the door closed. Although I was heartbroken, I knew that God had something else for me. Right around the time when I realized I couldn’t volunteer at the pregnancy center, Nicolas starting displaying signs of a disability, and the other two children became increasingly sicker. It was all a confirmation that my place was at home.

One by one my first five children were diagnosed with various neurological disorders. It slowly became evident that I was going to be in the disability ministry. Instead of thanking God, I cried and complained that He chose to give me such a heavy load. “Why me Lord?” I asked time and time again. The answer was always the same, “Why NOT you?” Onward I pressed, despite the numerous challenges we faced concerning the children and their treatments. It took some time, but eventually I came to realize God knew I could handle the load. He knew I would grow into a strong advocate with a passion for special needs children.

Despite the tiring days we face, I find my rest in Jesus. I may get little physical sleep, but I remind myself daily that He is carrying my burden and seeing me through. We often deal with hurtful comments from otherwise well meaning individuals, but we have learned to let them roll off of our backs. The most common comment is, “Why don’t you just give yourselves a break and stop having children?”  I guess we are overwhelmed from the world’s standard. But we are rich in ways they will never understand. We have the Lord, we always have good food, and there is a lot of love in our house.

The decision to trust God in the area of our fertility was not an easy one. I am only thirty years old; I am usually in pain because I have fibromyalgia, and already we have seven children!  I often find myself mentally adding up how many more we may have! The last time I found myself doing these mental calculations, God spoke to my heart and said, “I can do anything, Jodi. I can give you five more healthy baby girls like Sarah and Trinity if I want to.” Yes Lord, I know that You can… “Or, I could give you some more boys, and they may not be autistic this time.” Yes Lord, I know that You can also do that miracle if you choose. And the last thing He said to me was, “These children are my gift to you. No one on earth is perfect, but you can still find happiness if you accept what I have for you, and learn to rest in Me.”

After that small but powerful dialogue with the Lord, my heart wasn’t heavy anymore. I began to believe that He truly is in control. I have found that surrendering to God and having faith in His ability to care for our family is the greatest thing I can do. No longer do I ask, “Why Lord?” Instead, I know that our children are a wonderful blessing despite what the world may think.  I am so glad that God chose me to be their mother!

JODI BROCK
Phoenix, Arizona, USA
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Jodi is the founder of www.AutismHelp4u.com

If you have children with autism, this website will be of great value to you.

 

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