Living with this
Learning about Aspergers is a crucial aspect of understanding the autism spectrum of disorders. The history of the autism spectrum of disorders is an ideal starting point.
Are you familiar with Asperger syndrome? Information about Aspergers is very valuable to parents of children diagnosed with this disorder and for those working in the field.Aspergers Cast Test for Children
Asperger syndrome is one of five pervasive developmental disorders in the Diagnostic and Statistical Manual (DSM). In order for us to gain perspective on the condition, it's necessary to gather a short history of this diagnosis in the autism spectrum of disorders.
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Here is our story about living with Aspergers:
Continued from the About Us page ...
So there we were, a couple of clams getting through the days one-by-one by, doing the rote business of living without emotion. Having superficial conversations with colleagues and friends became our way of being until our fateful dinner with Anne and her husband at a Santa Fe style restaurant in Toronto ... when the very real possibility of adopting a baby entered as a topic of discussion.
From that evening on, our lives were forever changed. We retained a wonderful attorney, Christine, skilled in adoption law. We went through the rounds of the home study, the evaluations of our character in both past and present lives, and answered a load of questions that required a great deal of internal evaluation that we had not endeavored to look into previously. Eventually, the birth parents gave us the thumbs up.
Their criteria was twofold ...
- That we would raise the baby in the Protestant faith.
- That we would be certain to fess up to being adoptive parents to this child in an open and honest way.
The birth parents had determined that they didn’t want to know the baby or be in contact with us in the future.
Fortunately, we had already volunteered these same preferences in our home study. Lucky for us!
I was a nervous wreck as we waited for updates on the birth mom’s condition, the position of the baby in her womb, and the uncertainty of her due date, since she had no prenatal care and did not know when the baby might have been conceived. Her life consisted of working full time, caring for her toddler, and trying to save a dying youthful marriage to a man with bad luck in business and no money to spare. No one, other than her husband, knew of her pregnancy. She hid it successfully from her father and siblings by binding herself and wearing the layered clothing style popular at the time.
Toward the end of her term, she began to avoid friends and family completely in the desperate hope that she could quietly give birth, and no one would be the wiser. The baby would remain in the hospital for the three days required by law (allowing the birth parents some time to change their minds about releasing the baby to adoptive parents) Once the three days passed, our attorney came to our home where we were anxiously awaiting the delivery of this newborn baby into our care.
We sat on the loveseat beneath the bay window of our living room as we awaited the arrival of our new baby boy. The roads and park beyond the window allowed us perfect viewing while we watched eagerly for the car to arrive. The beautifully draped white-linen bassinette, a gift from our dear neighbors, sat beside me on that cold, sunny day in our bright, white Victorian living room. The dappling sunlight danced on the bassinette as a welcoming for its new tenant.
Our wonderful next-door neighbors had loaned us plenty of baby essentials that they had used and held onto after the births of their two young daughters. Their girls even contributed their collection of much loved Cabbage Patch doll clothes for the new baby to wear. Everything happened so quickly in the days prior to his birth that I hurriedly purchased the bare necessities for a newborn, with the clear understanding that his birth parents could legally ask for his return, no questions asked, until three months passed ... at which time he would officially be ours.
With this information in mind, a new kind of self-protective shell encased me, and I learned to accept the vulnerability and sought the skill for giving love fully and with an open palm. I came to believe that my loving care of this baby would be valuable and have meaning for his tiny self and for mine, even if our time together was brief. If we were able to have any time together, it would be complete with deep love, and I knew that I would be a better person for having an opportunity to feel this love and give it no matter what happened next. This clam began to open its shell.
Life with our new baby was thrilling. He slept in his bassinette at my side of the bed. I had the baby monitor beside me just to be sure that I didn’t sleep through any cry he might make in the night. He was so tiny, although his birth weight was a healthy 6.7 lbs. And his length was a good 21 inches, yet, he still looked teensy to us ... except his head - it was normal looking - but his arms and legs were astonishingly small. He scored well on the Apgar Test; a nine of ten score was good, so we were very happy new parents. Caring for him came easily for me with the guidance of my dear next-door neighbor, Jeannie, the bestower of kindness and good advice.
Learning about Aspergers ...
After four weeks or so, I had a good rhythm going on in our daily routine. My baby and I had bonded almost immediately, and he was never out of my sight. One cold afternoon I watched him sleeping snuggled warmly in his bassinette where the few rays of sunlight streamed through the leaded windows and danced on his linens. I noticed that his breathing was shallow, and he was not responsive to my gentle nudging and talking as I tried to wake him.
He felt cold. He stopped breathing! Terrified, I quickly gathered him up with all of his bedding, held him to my chest, and barreled out my front door to Jeannie’s house next door for help.
The air was freezing and I had on only my jeans, sweater, and slippers and my baby in his bedding as I opened her back door and screamed for help. Jeannie, a mother of two young girls, was spot on as she took my babe from me and did a cursory mothering exam. To my great astonishment and relief, my baby was breathing normally again ... perhaps the shock of the cold air in our sprint next door prompted his lungs into action - I do not know. We called the pediatrician, who directed us to meet him at the nearby hospital right away.
After multiple tests and blood work, it was determined that my son had a severe deadly respiratory virus. He was placed in ICU, and my husband and I were with him constantly through the many days as he lay in a cage-like metal crib with tubes going in and out of his tiny body and an oxygen mask covering his beautiful face.
He was given a very strong medicine, administered through an inhaler that was toxic to women who intended to become pregnant in the future. (I stood firmly in that category.) My mouth was now covered with a surgical mask, and I was sternly instructed to remain in a small room with a window through which I could observe my baby. I could not believe what was happening. I wanted to know how to pray. I begged him to live. I begged everyone who touched and treated him to make him live. And I desperately wanted to hold his tiny body against my breasts to comfort both of us ...
It was during this stay in the hospital that a pediatrician remarked that our baby's head seemed small and that his gaze was a bit "off" - and soon he was off for a cat scan, which showed clearly that he had experienced an infarct in at least one area of his brain. We were later told that infarct was another word for stroke. We were advised to take on a wait-and-see attitude and continue to hope for his recovery from the respiratory virus.This wait-and-see remark was repeated over the years by nearly every physician I consulted with when I began to notice severe lags in my son's developmental progress. I came to know deep resentment each time I heard that phrase and considered the person who said it as lazy and unwilling to research further into the causes of some of my son's later delays and unusual behaviors.
As soon as our boy recovered from his illness, we arranged to fly to San Diego to accept the nurturing care of my parents, who had recently relocated there. I was also intent upon seeing neurological pediatricians wile we were in San Diego and getting their expert opinions on the condition of my babe's current health regarding his body and mind. On the eve of our departure to California, we received a phone call from a local pediatrician who had discussed our family situation with our next-door neighbors. (The downside of living in a small town is that everyone seems to know your business.)
This MD strongly urged us to return our baby to the birth parents and seek adoption elsewhere. He had evaluated our son's tests and scans and was certain that our lives would be ruined if we moved forward with the adoption. He believed that our son would very likely be blind and deaf and would ultimately live in a vegetative state, or at minimum, be severely mentally retarded.
After the conversation that both my husband and I shared with this MD, we felt an odd combination of loyalty and commitment to our son, mixed with fury, and, indignation with the chutzpah of this Napoleonic commander of the phone line. Who did he think he was to suggest such a callous, unfeeling act of abandonment of our child? We hated his words, his intent, and if we had known him better, we might have hated him as well. My husband communicated quite clearly that we resented his interference in our private family matter and dismissively rang off.
We, never for a moment, considered opting out of the adoption. This baby was not a damaged piece of luggage, which one could simply return for a perfect piece. He was a human being with some health issues, and he was ours to love and nurture forever. In addition, we have loved being his parents!
We left for California the following day with an attitude of invincibility, setting out to make the doctors wrong. Our arrogance and ignorance ran us as neon gas runs the strip in Vegas.
In search of Asperger treatment strategies ...
Fortunately, my husband’s firm provided him the opportunity to develop and expand their advertising campaign in Southern California, and we were able to settle into a house not far from my folk's home. I began to hit the streets of San Diego in search of all specialists of pediatric medicine, many of whom were associated with Children's Hospital, a highly respected with an up-to-the-minute research facility with outstanding surgical, diagnostic, and treatment equipment and staff.
At first my six-week old baby's neurological exam and up-to-the-minute tests showed us that he did indeed suffer a couple of strokes and that he was at risk for several developmental delays, including Cerebral Palsy. He was immediately booked into physical and occupational therapy sessions to aid him in the continuing development and use of his muscles in ways that have proved to be quite successful over the years.
We scheduled physical therapy and other therapies two to three times a week. The therapist's knowledge of how to initiate and educate the development of alternate brain matter to take on specific exercises and body movements, thereby, to integrate into the brain memory the repeated movements effectively during these sessions showed up as rewards in his ability to sit, walk, write, ride a bicycle, and bounce a ball.
The constant and boring repetitious work was hard on my son, his muscles, and his therapists who had cleverly created games of all sorts to engage the same muscles in differing ways according to his personal interests at any given age. All of this work was what made the difference in my son's physical achievements for many years to come.
At three months of age, our son was officially diagnosed with Cerebral Palsy. At three and one half years, he was diagnosed with PDD (pervasive developmental delays) and within two months, he was diagnosed as Autistic.
Diet is so important in treating Asperger Syndrome ...
After a lot of study and implementation of diets, alternative healing techniques, and a resolute determination to heal my son of any impediments to living a normal, independent life, he is now 18 years old - and has Asperger Syndrome.
No ticks, no wackiness, no freak outs, no hand flapping, no echolalia, none of it. He is pretty well free of all the Autistic stuff. Of course, the Cerebral Palsy remains, but it does not interfere with his living a full life as Autism done had in his early years. Having an Asperger Companion pooch has really been beneficial for us as well!
I want to share what worked for us so that you can have a hitch-up onto the land of "TYPICAL" ... THAT OVER THE RAINBOW PLACE that the other kids and their families get to live in. It worked for us. And now I want to tell you what we did about Aspergers.
We hope and pray you learn some new ideas for helping people with Aspergers from our website. Please contact me with any questions or just to tell me your experiences with Aspergers.
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