September 3, 2001
I have what's called a microwave personality -- I want it, and I want it now. Needless to say, my whole pregnancy was a lesson in patience for me. Not only did I have to wait a long and agonizing three weeks to see if I was pregnant, but then I had to wait another 37 weeks (give or take) for my bundle of joy to arrive!
My pregnancy had been without issue - no morning sickness, no excessive weight gain, no gestational diabetes...no problems whatsoever! I arrived at the hospital at 2:30 in the afternoon experiencing nothing more than a "funny feeling" every 8 minutes, and delivered Cameron three hours later. All along I insisted he was due on Labor Day, even though the doctors predicted he would come one week later, on September 11. Sure enough, Cameron was born on September 3, 2001 -- Labor Day. He was 18 inches long and weighed a scant 5 pounds 10 ounces.
Ron was a fantastic birthing coach. I went into hard labor right after my water was broken, and Ron was attentive, loving and supportive through the whole process. Of course, at the first hint of what the term "hard labor" truly meant, I was breathlessly calling out for the anesthesiologist and an epidural.
"You're ok to have the epidural at this point," the nurse told me after she checked my progress and scanned the monitor printout. "But, the anesthesiologist is in surgery, so it will be about an hour."
Ok. At this point refer back to my opening paragraph: I have what's called a microwave personality. I can't even wait an hour for dinner to be ready! I thought I was going to die -- if the pain wasn't going to kill me, my impatience certainly was! As it turned out, I had no time for dropping dead. I didn't think so at the time, but I did progress quite quickly for a first-time mother. In no time at all, the hour passed, the anesthesiologist arrived, the epidural was placed, the doctor returned from his golf date, I pushed three times, and Cameron was in my arms!
He was so perfect. I know. I know! Every mother believes their child is perfect, and given what a mother goes through, she has every right to claim so. However, Cameron really was "Gerber Baby" perfect! His little face was smooth and pink. His head was nicely round with just the slightest whisp of blond hair. His fingers and toes were all there and just begged to be admired and counted. And last, but not least, his vibrant, violet-blue eyes were full of expression; the doctor said Cameron's eyes were so intriguing -- as if they were windows into an "old sole". I immediately thought back to my dream the morning I found out I was pregnant when a voice told me that my son was in me, and he was "anxious and excited for his life to begin". From that point forward, I fully believe that life does begin at conception. I don't care what anyone from any side of the political / religious aisle tells me; I know what I know.
No other experience in my whole life compares to the birth of Cameron. I couldn't believe that he was there - a part of Ron - a part of me. I treasured holding my newborn son, remembering everyone's statements that they grow up way to fast. Soon, he wouldn't want his mother holding him anymore; he'd be off to school, playing with friends, tagging along with his dad, playing in sports, and then - God forbid - dating a girl that would push me aside in his heart! Before any of that could happen, I was going to treasure each and every moment I could.
What a miracle birth and new life truly is! I felt so blessed, so honored, and so complete with my family. That whole first week of his life was such a blur. There were late night feedings and cuddlings, diapers and naps, and visitors with gift bags of treasures for our new addition. Family was all around us - my parents, Ron's parents, my step-son, Trevor, Tom and Yvonne, Bill and Carol - they were all there. Yet, on the following Monday, September 11, 2001, I was really looking forward to being alone with Cameron.
Wednesday, December 2, 2009
What's his prognosis, doctor?
Late Spring, 2004
Dr. MacMaster entered the room. Ron was seated in the chair, while I played with Cameron on the examining table. Cameron loved the sound of the paper crinkling under him, so we played our game of "who could crinkle the paper the loudest?" Cameron laughed out loudly at the doctor; he was always excited to see Dr. MacMaster! I stepped back as Dr. MacMaster took over the game with Cameron.
"How's my little buddy today?", he asked as he tickled Cameron and teased him with the paper. Cameron let out one of his big belly laughs along with a huge smile.
The doctor then turned to me. "I know the developmental specialists have been working with Cameron for some time now, and my nurse tells me that they've diagnosed him with Autism."
"Yes." I replied. Quickly I hoped that his next statement would be that they were wrong.
"They're very thorough up there (referring to the staff of the special education department), they have a great team, and they are committed. I have other parents that work with them and they're all quite happy with the work they do with their children."
I was crushed. This isn't what I wanted to hear. He was agreeing with them -- he was taking their side.
"We're seeing more and more of this," he continued, "although I only have two other children that come to see me that have been diagnosed with Autism. I do know that it's such a broad diagnosis, and can come out in so many different forms. Five years ago I rarely heard of a child in this area with Autism, let alone have one as a patient, but now I personally have three patients under the age of four," he paused and switched his attention from Cameron to Ron and I. "What can I do for you today?"
"You can pull out your prescription pad and fix this," I thought angrily to myself. Instead "we don't know," is what came out of Ron's and my mouths. There was an uncomfortable silence for what felt like minutes, but was probably more like seconds.
"I can do a little research," Doctor MacMaster said, "and see what's working for my other families. Other than that, I truly believe that your best bet is to keep on doing what your doing; continue the in-home therapies, try to keep Cameron engaged, and don't fall for any "quick fix" treatments you may find on the internet. Families have lost fortunes on those. Sadly, there are those out there that will try to profit from your desire to cure your son. There is no cure, but therapy does help."
This was all so clinical. Where was the rage? Why wasn't the doctor insisting that we get second opinions, schedule appointments with specialists, or start him on the latest drug treatment? Why wasn't he yelling, "STAT", and rounding up the medical troops in his office to come in right away and fix my child? Why wasn't he telling us that the University of Michigan or the Mayo Clinic had great success in curing Autism? At the very least, why wasn't he crying?
"Will he ever talk?" was all I could ask at that point.
"It's hard to say, many do obtain speech -- even if it's limited, but some don't. The school has speech therapists that will work with him, and they'll work with various devices to help him communicate. Like I said, keep on doing what you're doing. Early intervention is key with these children, and luckily, Cameron has been with them for about two years now," he then turned his concern directly to Ron and I, "How are the two of you holding up?"
"We're fine," Ron quickly stated before I could tell the truth, "I just think so much of this will come in time. My niece was speech delayed until she was five, and now she's an honor student at U of M. I believe that Cameron is just Cameron and he's working on his own schedule. I know Joy's really upset about this and wants a quick fix, but I think I agree with you; we just need to keep on doing what we're doing and he'll get there."
I wanted to scream. Ron was retreating - he'd given up the fight he had in him as recently as that morning. The doctor never said Cameron would get "there", for "there", to me, meant "normal, talkative, lots of friends, normal schooling, college, career, family..." Dr. MacMaster never committed Cameron to getting "there". To me, the doctor iterated that Cameron would get "somewhere", but no one -- not even the doctor who could cure everything else we had ever taken to him -- knew where that would be.
Furthermore, I was not fine. I was hurt. I was sad, distraught, alone, confused, mad, bitter, and just about every other "negative" I could possibly be! I had just lost my son. My dreams for him had died, just like Yvonne, my sister-in-law that had passed away from cancer one year before this. I knew that Cameron hadn't died, per-se, but it sure as hell felt like it. I was the furthest from fine a person could ever be, and my husband, my best friend, couldn't understand that.
Ron and the doctor switched the conversation to Cameron's pronated feet and the need to get Cameron to see a pediatric podiatrist. "I'll have my office schedule an appointment for him. There's a great doctor in Traverse City. He'll probably prescribe braces for his feet that he'll have to wear in his shoes. Most kids don't like them at first, but it will give him more stability, and he'll get used to them. In time, he'll more than likely need surgery, but they wait to do that until he's around 12."
I couldn't believe it. We had no real plan of attack for the Autism. And, to add insult to injury, Cameron was going to have to wear leg braces.
Ron and I walked out of the clinic with no more answers than when we arrived. In the car, Ron checked his cell phone and commented that he had many calls to return. "I'll have to work late tonight," he declared, "I've got workers and my boss wanting answers now." He returned phone calls from the car, as I sat quietly. Cameron was in the back seat playing with his talking Elmo doll.
"Can you take that away from him?" Ron asked as he held his hand over the speaker of his phone, "I don't want this worker to hear that stupid thing going off." (Cameron had a way of rapid push-buttoning his Elmo doll to keep repeating parts of phrases - it was, to say the least - quite annoying.)
And so it went. The Ron that sat with me on the couch comforting me just three days ago was back to being in denial. I felt like Cameron and I were interrupting Ron's work time, and I was over-reacting, and wasting his time. I might have been wrong. Looking back now, I understand that it was Ron's way of coping -- I think he knew deep down that I was falling apart, and since he couldn't fix it, he needed to keep that which he could together; maintaining the day-to-day was his best course of action. Nevertheless, being a protective mother and, I'll admit it, a bit too thin-skinned, I took it personally.
I carried Cameron in the house and quickly removed his jacket, shoes and socks. Cameron would fuss something awful until his shoes and socks were off his feet. How on earth did Ron and Dr. MacMaster think I was going to be able to put braces on him every morning? They had no idea what I was going to have to go through for that to happen. I sat and played with Cameron on the floor while more and more questions and worries popped in my head.
Dr. MacMaster entered the room. Ron was seated in the chair, while I played with Cameron on the examining table. Cameron loved the sound of the paper crinkling under him, so we played our game of "who could crinkle the paper the loudest?" Cameron laughed out loudly at the doctor; he was always excited to see Dr. MacMaster! I stepped back as Dr. MacMaster took over the game with Cameron.
"How's my little buddy today?", he asked as he tickled Cameron and teased him with the paper. Cameron let out one of his big belly laughs along with a huge smile.
The doctor then turned to me. "I know the developmental specialists have been working with Cameron for some time now, and my nurse tells me that they've diagnosed him with Autism."
"Yes." I replied. Quickly I hoped that his next statement would be that they were wrong.
"They're very thorough up there (referring to the staff of the special education department), they have a great team, and they are committed. I have other parents that work with them and they're all quite happy with the work they do with their children."
I was crushed. This isn't what I wanted to hear. He was agreeing with them -- he was taking their side.
"We're seeing more and more of this," he continued, "although I only have two other children that come to see me that have been diagnosed with Autism. I do know that it's such a broad diagnosis, and can come out in so many different forms. Five years ago I rarely heard of a child in this area with Autism, let alone have one as a patient, but now I personally have three patients under the age of four," he paused and switched his attention from Cameron to Ron and I. "What can I do for you today?"
"You can pull out your prescription pad and fix this," I thought angrily to myself. Instead "we don't know," is what came out of Ron's and my mouths. There was an uncomfortable silence for what felt like minutes, but was probably more like seconds.
"I can do a little research," Doctor MacMaster said, "and see what's working for my other families. Other than that, I truly believe that your best bet is to keep on doing what your doing; continue the in-home therapies, try to keep Cameron engaged, and don't fall for any "quick fix" treatments you may find on the internet. Families have lost fortunes on those. Sadly, there are those out there that will try to profit from your desire to cure your son. There is no cure, but therapy does help."
This was all so clinical. Where was the rage? Why wasn't the doctor insisting that we get second opinions, schedule appointments with specialists, or start him on the latest drug treatment? Why wasn't he yelling, "STAT", and rounding up the medical troops in his office to come in right away and fix my child? Why wasn't he telling us that the University of Michigan or the Mayo Clinic had great success in curing Autism? At the very least, why wasn't he crying?
"Will he ever talk?" was all I could ask at that point.
"It's hard to say, many do obtain speech -- even if it's limited, but some don't. The school has speech therapists that will work with him, and they'll work with various devices to help him communicate. Like I said, keep on doing what you're doing. Early intervention is key with these children, and luckily, Cameron has been with them for about two years now," he then turned his concern directly to Ron and I, "How are the two of you holding up?"
"We're fine," Ron quickly stated before I could tell the truth, "I just think so much of this will come in time. My niece was speech delayed until she was five, and now she's an honor student at U of M. I believe that Cameron is just Cameron and he's working on his own schedule. I know Joy's really upset about this and wants a quick fix, but I think I agree with you; we just need to keep on doing what we're doing and he'll get there."
I wanted to scream. Ron was retreating - he'd given up the fight he had in him as recently as that morning. The doctor never said Cameron would get "there", for "there", to me, meant "normal, talkative, lots of friends, normal schooling, college, career, family..." Dr. MacMaster never committed Cameron to getting "there". To me, the doctor iterated that Cameron would get "somewhere", but no one -- not even the doctor who could cure everything else we had ever taken to him -- knew where that would be.
Furthermore, I was not fine. I was hurt. I was sad, distraught, alone, confused, mad, bitter, and just about every other "negative" I could possibly be! I had just lost my son. My dreams for him had died, just like Yvonne, my sister-in-law that had passed away from cancer one year before this. I knew that Cameron hadn't died, per-se, but it sure as hell felt like it. I was the furthest from fine a person could ever be, and my husband, my best friend, couldn't understand that.
Ron and the doctor switched the conversation to Cameron's pronated feet and the need to get Cameron to see a pediatric podiatrist. "I'll have my office schedule an appointment for him. There's a great doctor in Traverse City. He'll probably prescribe braces for his feet that he'll have to wear in his shoes. Most kids don't like them at first, but it will give him more stability, and he'll get used to them. In time, he'll more than likely need surgery, but they wait to do that until he's around 12."
I couldn't believe it. We had no real plan of attack for the Autism. And, to add insult to injury, Cameron was going to have to wear leg braces.
Ron and I walked out of the clinic with no more answers than when we arrived. In the car, Ron checked his cell phone and commented that he had many calls to return. "I'll have to work late tonight," he declared, "I've got workers and my boss wanting answers now." He returned phone calls from the car, as I sat quietly. Cameron was in the back seat playing with his talking Elmo doll.
"Can you take that away from him?" Ron asked as he held his hand over the speaker of his phone, "I don't want this worker to hear that stupid thing going off." (Cameron had a way of rapid push-buttoning his Elmo doll to keep repeating parts of phrases - it was, to say the least - quite annoying.)
And so it went. The Ron that sat with me on the couch comforting me just three days ago was back to being in denial. I felt like Cameron and I were interrupting Ron's work time, and I was over-reacting, and wasting his time. I might have been wrong. Looking back now, I understand that it was Ron's way of coping -- I think he knew deep down that I was falling apart, and since he couldn't fix it, he needed to keep that which he could together; maintaining the day-to-day was his best course of action. Nevertheless, being a protective mother and, I'll admit it, a bit too thin-skinned, I took it personally.
I carried Cameron in the house and quickly removed his jacket, shoes and socks. Cameron would fuss something awful until his shoes and socks were off his feet. How on earth did Ron and Dr. MacMaster think I was going to be able to put braces on him every morning? They had no idea what I was going to have to go through for that to happen. I sat and played with Cameron on the floor while more and more questions and worries popped in my head.
Friday, July 24, 2009
Now what are we going to do?
Late Spring 2004:
I watched Ron as he read over Cameron's developmental assessment, and I held my breath as he brought up particular areas within the test. "This is wrong," he would say at first glance. "No," he'd say to himself, "I guess that's about right." Line by line, as I had earlier in the day, he searched in vain for blatant errors or omissions that would change Cameron's diagnosis. When he was through, he put the report on the table, and went and picked up Cameron. He kissed him, and he looked at me through tears that were starting to form, and asked me, "What's next?"
"I have no idea," was all I could say.
The phone rang in Ron's home office. It was Ron's mother, and she would want to know what happened with Cameron. Ron answered the phone, picked up the results, and walked back into his office. I thought back to the conversation I had scantly an hour previous with my parent's. It had ended the same way that my conversation with Ron had: "I have no idea."
From the office I heard Ron's side of the conversation, "Mom, really, I don't know....no, we haven't decided anything....no, Mom, I just don't know."
Cameron got into his big, leather, rocker-recliner and began to play with his keyboard. There was the inappropriate play the women had spoke of; Cameron was repeatedly hitting the "sample" button over and over again without letting the full song play out. I watched him as he rocked and giggled - rhythmically switching between two or three different partially-played tunes. He was happy. In Cameron's "world" this was his enjoyment. He looked at me and laughed his full-belly laugh, and I forced a smile back. What we had thought was cute as early as this morning, was now an irritating reminder of the days events and what laid ahead.
I pulled out my laptop. I would have to search the internet for answers. We had far too many questions to leave unanswered until the women from the school came back on Tuesday. I Googled "Autism" and the results listed numerous sites in regards to my query. Before I would read anything, though, I reached for the phone and called the doctor's office.
At Cameron's six month check-up, Dr. MacMaster noted missed milestones, and sent us to a team of child development specialists and to Michigan's Early Intervention program. I explained to the receptionist that Cameron had been diagnosed with Autism and we needed to get Cameron in to see the doctor as soon as possible. I was relieved to find that we could see the doctor on the following Monday. Ron came from his office as I was finishing the call, and nodded in agreement as I recited the appointment time back to the receptionist. Looking back, I don't know what we were hoping to accomplish, but Dr. MacMaster was not only kind and gentle, but he was - in our eyes - wise above and beyond that of any other doctor. He would know what to do next, and I felt relieved that we were at least doing something.
Ron sat next to me as I began looking for Autism information on the web. He put his arm around me and kissed me, causing a flood of tears on my part to burst forth again! "Don't worry, he'll be ok," Ron continued, "Look how happy he is. We have to remember that this isn't a death sentence, it's just something we have to deal with."
I was so relieved by Ron's response to the news; I was terrified that he'd remain in denial and prohibit any more "early intervention". "It's just something we have to deal with," is all I needed to hear from my best friend -- my husband. I didn't have to heart to tell him that I was afraid of him getting mad at me for all of this. Ron and I flipped roles that day. Up until that point, Ron denied that Cameron had a serious problem. Yet, in the eye of the diagnosis, Ron became the rock and my support. He appeared more ease and accepting. However, I had been the one who took Cameron to the specialists, scheduled the tests, and looked for answers. Now I had my answer, and I was the one who wanted it all to go away!
The rest of Cameron's first "weekend with Autism" was a blur for me. I know my emotions were raw, my need for information could not be quenched, and my resentment for every "normal" family was honestly very high. Happy "normal" families began to appear everywhere I went, and every happy "normal" family I saw reminded me that our family was not.
I did find some information on my own that weekend. The definition of Autism was quite easy to find: "Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities." - the Autism Society of America, (ASA).
However, what I desperately wanted to find was Cameron's prognosis. More specifically, I wanted to know what his odds were. How many children diagnosed early go on to speak, read, attend normal schools/colleges, hold a job, get married; what percentage move on to appear 'cured'? Web site by web site I clicked and scrolled. I reworded my Google searches and then tried other search engines. The statistics weren't there. I'd have to wait until Monday; Dr. MacMaster would know.
I watched Ron as he read over Cameron's developmental assessment, and I held my breath as he brought up particular areas within the test. "This is wrong," he would say at first glance. "No," he'd say to himself, "I guess that's about right." Line by line, as I had earlier in the day, he searched in vain for blatant errors or omissions that would change Cameron's diagnosis. When he was through, he put the report on the table, and went and picked up Cameron. He kissed him, and he looked at me through tears that were starting to form, and asked me, "What's next?"
"I have no idea," was all I could say.
The phone rang in Ron's home office. It was Ron's mother, and she would want to know what happened with Cameron. Ron answered the phone, picked up the results, and walked back into his office. I thought back to the conversation I had scantly an hour previous with my parent's. It had ended the same way that my conversation with Ron had: "I have no idea."
From the office I heard Ron's side of the conversation, "Mom, really, I don't know....no, we haven't decided anything....no, Mom, I just don't know."
Cameron got into his big, leather, rocker-recliner and began to play with his keyboard. There was the inappropriate play the women had spoke of; Cameron was repeatedly hitting the "sample" button over and over again without letting the full song play out. I watched him as he rocked and giggled - rhythmically switching between two or three different partially-played tunes. He was happy. In Cameron's "world" this was his enjoyment. He looked at me and laughed his full-belly laugh, and I forced a smile back. What we had thought was cute as early as this morning, was now an irritating reminder of the days events and what laid ahead.
I pulled out my laptop. I would have to search the internet for answers. We had far too many questions to leave unanswered until the women from the school came back on Tuesday. I Googled "Autism" and the results listed numerous sites in regards to my query. Before I would read anything, though, I reached for the phone and called the doctor's office.
At Cameron's six month check-up, Dr. MacMaster noted missed milestones, and sent us to a team of child development specialists and to Michigan's Early Intervention program. I explained to the receptionist that Cameron had been diagnosed with Autism and we needed to get Cameron in to see the doctor as soon as possible. I was relieved to find that we could see the doctor on the following Monday. Ron came from his office as I was finishing the call, and nodded in agreement as I recited the appointment time back to the receptionist. Looking back, I don't know what we were hoping to accomplish, but Dr. MacMaster was not only kind and gentle, but he was - in our eyes - wise above and beyond that of any other doctor. He would know what to do next, and I felt relieved that we were at least doing something.
Ron sat next to me as I began looking for Autism information on the web. He put his arm around me and kissed me, causing a flood of tears on my part to burst forth again! "Don't worry, he'll be ok," Ron continued, "Look how happy he is. We have to remember that this isn't a death sentence, it's just something we have to deal with."
I was so relieved by Ron's response to the news; I was terrified that he'd remain in denial and prohibit any more "early intervention". "It's just something we have to deal with," is all I needed to hear from my best friend -- my husband. I didn't have to heart to tell him that I was afraid of him getting mad at me for all of this. Ron and I flipped roles that day. Up until that point, Ron denied that Cameron had a serious problem. Yet, in the eye of the diagnosis, Ron became the rock and my support. He appeared more ease and accepting. However, I had been the one who took Cameron to the specialists, scheduled the tests, and looked for answers. Now I had my answer, and I was the one who wanted it all to go away!
The rest of Cameron's first "weekend with Autism" was a blur for me. I know my emotions were raw, my need for information could not be quenched, and my resentment for every "normal" family was honestly very high. Happy "normal" families began to appear everywhere I went, and every happy "normal" family I saw reminded me that our family was not.
I did find some information on my own that weekend. The definition of Autism was quite easy to find: "Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities." - the Autism Society of America, (ASA).
However, what I desperately wanted to find was Cameron's prognosis. More specifically, I wanted to know what his odds were. How many children diagnosed early go on to speak, read, attend normal schools/colleges, hold a job, get married; what percentage move on to appear 'cured'? Web site by web site I clicked and scrolled. I reworded my Google searches and then tried other search engines. The statistics weren't there. I'd have to wait until Monday; Dr. MacMaster would know.
Wednesday, July 22, 2009
Stunned and Alone
There I sat, at my mother's table, alone, confused, abandoned, and mad. The women from the school district had left, but their words remained like ghosts that repeated over and over, "We have come to the conclusion, along with the Psychiatrist and Developmental Specialist, that Cameron has Autism."
I was not prepared at all to hear such news. Cameron did not talk, but Ron's niece didn't speak until she was five, and now she's an honor student. Cameron didn't crawl until 14 months or walk until 27 months, but he did have pronated feet that he had to overcome. Cameron didn't hold his own bottle, feed himself finger foods, or show any interest in regular foods, but his older half-brother was not just a picky eater, he was downright fearful of anything that did not come out of a fast-food bag. Sure, Cameron had some issues, but we could rationalize them away. Were we not all "quirky" in our own little ways?
I thought back to some articles I had read in the obstetrics' office about children with Autism, but they didn't sound at all like my Cameron. My Cameron was social. He loved to tickle, hug, laugh, be read to, and look lovingly at those he was close to. Yes, he did focus intently on flicking his fingers close up to his eyes while he rocked on the floor, he was obsessed with ceiling fans, and he did have screaming fits when exposed to certain sounds. However, to label him as "Severe" and "Autistic" was preposterous and hurtful!
Over two years I had trusted and befriended these women: Cheryl (childhood specialist), Pam (physical therapist), and Jamie (speech therapist). I welcomed them into my home twice a week and Cameron adored them as they played together on the floor. How could they so blatantly and coldly drop this bomb on Cameron and I, and then just walk out the door? Cheryl did say, during their report, "This doesn't change Cameron. Cameron is still Cameron." Who the hell was she kidding? This changed everything.
I picked up the paperwork the women had left for me to review. The first was a copy of Cameron's Denver Developmental Screening Test (DDST). The test was administered by the school, and included our (Ron's and mine, and my parents) input as well. It covered of all aspects of development: social/emotional behavior, motor skills and coordination, cognitive abilities, and language and speech. At age two years and eight months, Cameron's highest score was just over one year for social/emotional behavior and his lowest scores were under six months for both language/speech and cognitive abilities. Cameron's motor skills and coordination fell within the two ranges. I looked for errors; they had to have miscalculated something or perhaps omitted some key information. I read the report over and over, but I could not find anything misleading or erroneous.
I picked up the second form the women had left. It was an application to the Michigan Department of Mental Health for a family support subsidy in the amount of $222.11. Cheryl had already filled in the diagnosis information and signed it. All I had to do was attach a copy of our tax return, sign, and return in the attached envelope. That was it. There was nothing else. There were no pamphlets defining Autism, no booklets filled with happy parents of cured children, no lists special Autism schools, no course of action, no prognosis, and last, but not least, no hope.
I knew what Ron was going to say. He did not believe Cameron needed any intervention in the first place; he maintained that his son was stuck in a system based on the school's economy -- more kids in the program equaled more funding for the school. He was already mad at me for "opening up this can of worms" as he called it. I considered not telling Ron about the results. But, damn it, he was my best friend - the "love of my life", and this is our son, if I could not talk to him and get support then I would simply implode! I put my head down on the table and started crying.
After a few minutes, I sat back up, and read the report again, this time looking for points to convince Ron of that which he was so vehemently avoiding. Ron insisted Cameron was just doing things "in his own time", even if "in his own time" meant missing milestones completely. I likened Cameron to a child putting his life together like a puzzle; Cameron was building his own puzzle, but he was putting some pieces in the wrong spots and throwing some pieces out completely. A sad picture of Cameron's future formed in my mind. I choked back my dreams of him proudly handing me a crayon masterpiece saying, "It's a picture of you and daddy to put on the refrigerator," and replaced it with a withdrawn, mute, and emotionless child being teased and tormented on a playground.
Ron was clearly in denial in regards to Cameron's missed benchmarks, and he was going to flip a gasket when I give him this news. He was already mad at me for commenting once, when I took off work for Cameron's therapy, that Cameron was my number one priority. Ron resented that statement, and he would haunt me with it for the rest of our marriage. Ron loved Cameron and loves him more as each day goes by, please don't misunderstand my words; Ron envisioned a marriage that was just us two - children, including his own son from a previous relationship - would be loved, but marginal to our relationship.
I looked over at Cameron. He was rocking in his favorite chair in my parent's living room, a blanket covered his head. I could tell that within the confines of his personal tent he was flicking his fingers; "stimming" is the term the women used for this, and it refers to self-stimulation. I called out to him, "Cameron!"
The rocking and stimming continued.
"Cameron!" again I called out, hoping beyond hope that this was all a bad dream and he would remove that damn blanket from over his head and reply, "yes, mama?"
Nothing. No reply. No cessation of stimming. I went to him and picked him up as I sat back down into the rocker with him cradled in my arms. I removed the blanket from his head and stroked his cheek. He smiled, completely oblivious to my saddened face stained with tears. He giggled and pulled at my hair.
It was true. It was all true, and there was no denying it: Cameron had special needs. Why him?! Why me?! I had just lost my sister-in-law, Yvonne, one year earlier to cancer, and I was still grieving that loss. Now, I had "lost" my son and could feel my marriage slipping away too. The reality flooded over me and I broke down into a cry that I had been holding back since Cameron's doctor sent him in for testing at six months of age.
I felt abandoned and so very alone. I wanted desperately to call Yvonne; she would know exactly what to say and what to do. But, that was no longer an option. Instead, I cried. I cried for the child I had just "lost". I cried for the young man that would never be. I cried for the arguments that were going to come when I took Cameron home. I cried for the time, not so long ago, when everything was perfect and Ron and I were so happy.
I was not prepared at all to hear such news. Cameron did not talk, but Ron's niece didn't speak until she was five, and now she's an honor student. Cameron didn't crawl until 14 months or walk until 27 months, but he did have pronated feet that he had to overcome. Cameron didn't hold his own bottle, feed himself finger foods, or show any interest in regular foods, but his older half-brother was not just a picky eater, he was downright fearful of anything that did not come out of a fast-food bag. Sure, Cameron had some issues, but we could rationalize them away. Were we not all "quirky" in our own little ways?
I thought back to some articles I had read in the obstetrics' office about children with Autism, but they didn't sound at all like my Cameron. My Cameron was social. He loved to tickle, hug, laugh, be read to, and look lovingly at those he was close to. Yes, he did focus intently on flicking his fingers close up to his eyes while he rocked on the floor, he was obsessed with ceiling fans, and he did have screaming fits when exposed to certain sounds. However, to label him as "Severe" and "Autistic" was preposterous and hurtful!
Over two years I had trusted and befriended these women: Cheryl (childhood specialist), Pam (physical therapist), and Jamie (speech therapist). I welcomed them into my home twice a week and Cameron adored them as they played together on the floor. How could they so blatantly and coldly drop this bomb on Cameron and I, and then just walk out the door? Cheryl did say, during their report, "This doesn't change Cameron. Cameron is still Cameron." Who the hell was she kidding? This changed everything.
I picked up the paperwork the women had left for me to review. The first was a copy of Cameron's Denver Developmental Screening Test (DDST). The test was administered by the school, and included our (Ron's and mine, and my parents) input as well. It covered of all aspects of development: social/emotional behavior, motor skills and coordination, cognitive abilities, and language and speech. At age two years and eight months, Cameron's highest score was just over one year for social/emotional behavior and his lowest scores were under six months for both language/speech and cognitive abilities. Cameron's motor skills and coordination fell within the two ranges. I looked for errors; they had to have miscalculated something or perhaps omitted some key information. I read the report over and over, but I could not find anything misleading or erroneous.
I picked up the second form the women had left. It was an application to the Michigan Department of Mental Health for a family support subsidy in the amount of $222.11. Cheryl had already filled in the diagnosis information and signed it. All I had to do was attach a copy of our tax return, sign, and return in the attached envelope. That was it. There was nothing else. There were no pamphlets defining Autism, no booklets filled with happy parents of cured children, no lists special Autism schools, no course of action, no prognosis, and last, but not least, no hope.
I knew what Ron was going to say. He did not believe Cameron needed any intervention in the first place; he maintained that his son was stuck in a system based on the school's economy -- more kids in the program equaled more funding for the school. He was already mad at me for "opening up this can of worms" as he called it. I considered not telling Ron about the results. But, damn it, he was my best friend - the "love of my life", and this is our son, if I could not talk to him and get support then I would simply implode! I put my head down on the table and started crying.
After a few minutes, I sat back up, and read the report again, this time looking for points to convince Ron of that which he was so vehemently avoiding. Ron insisted Cameron was just doing things "in his own time", even if "in his own time" meant missing milestones completely. I likened Cameron to a child putting his life together like a puzzle; Cameron was building his own puzzle, but he was putting some pieces in the wrong spots and throwing some pieces out completely. A sad picture of Cameron's future formed in my mind. I choked back my dreams of him proudly handing me a crayon masterpiece saying, "It's a picture of you and daddy to put on the refrigerator," and replaced it with a withdrawn, mute, and emotionless child being teased and tormented on a playground.
Ron was clearly in denial in regards to Cameron's missed benchmarks, and he was going to flip a gasket when I give him this news. He was already mad at me for commenting once, when I took off work for Cameron's therapy, that Cameron was my number one priority. Ron resented that statement, and he would haunt me with it for the rest of our marriage. Ron loved Cameron and loves him more as each day goes by, please don't misunderstand my words; Ron envisioned a marriage that was just us two - children, including his own son from a previous relationship - would be loved, but marginal to our relationship.
I looked over at Cameron. He was rocking in his favorite chair in my parent's living room, a blanket covered his head. I could tell that within the confines of his personal tent he was flicking his fingers; "stimming" is the term the women used for this, and it refers to self-stimulation. I called out to him, "Cameron!"
The rocking and stimming continued.
"Cameron!" again I called out, hoping beyond hope that this was all a bad dream and he would remove that damn blanket from over his head and reply, "yes, mama?"
Nothing. No reply. No cessation of stimming. I went to him and picked him up as I sat back down into the rocker with him cradled in my arms. I removed the blanket from his head and stroked his cheek. He smiled, completely oblivious to my saddened face stained with tears. He giggled and pulled at my hair.
It was true. It was all true, and there was no denying it: Cameron had special needs. Why him?! Why me?! I had just lost my sister-in-law, Yvonne, one year earlier to cancer, and I was still grieving that loss. Now, I had "lost" my son and could feel my marriage slipping away too. The reality flooded over me and I broke down into a cry that I had been holding back since Cameron's doctor sent him in for testing at six months of age.
I felt abandoned and so very alone. I wanted desperately to call Yvonne; she would know exactly what to say and what to do. But, that was no longer an option. Instead, I cried. I cried for the child I had just "lost". I cried for the young man that would never be. I cried for the arguments that were going to come when I took Cameron home. I cried for the time, not so long ago, when everything was perfect and Ron and I were so happy.
Sunday, July 19, 2009
He'll go on to do great and wonderful things.
My pregnancy was planned; I monitored my cycle for two months beforehand, and developed calendars that showed my ovulation window, time to test for pregnancy, and -- if positive -- a due date. My husband, Ron, and I took advantage of my ovulation window and then waited for the day I had marked on my calendar to take the test. As the circled day drew near, I purposely erased the date and extended it three more days. Nevertheless, the test came back "negative". It was our first try -- no problem -- we could try again next month. I readjusted my calendar.
Two nights later I had a dream. I was standing in a field by a lake in our neighborhood. I was facing the north and large billowy clouds began to roll in my direction. Suddenly, yet softly, a beam of light split through the clouds and illuminated my body. I gazed upon my arms and hands; they were glowing in an out pour of iridescent showers of golden crystals and sparkling diamonds that permeated my skin. Yet, in the midst of this splendor, I became confused and began to panic, "Am I dying?!" I shouted out in my sleep.
A voice, soft and loving, spoke to me words that I will never forget: "Your son is with you, and he is anxious for life. He'll go on to do great and wonderful things."
I was puzzled and thought to myself, "How can this be? I'm not pregnant."
The voice continued, "He has much to do, and many obstacles to overcome. Know that he chose this path, and he's counting on your love and support."
I woke immediately, and without thought I darted into the bathroom to take a second pregnancy test. I focused on my watch that sat on the bathroom sink. It was 5:12 a.m., January 2, 2001. After a few moments had passed, I closed my eyes and said a little prayer, "Please, God, let it be positive." Slowly, I opened my eyes and looked at the stick. "Positive / Positive".
My heart skipped a beat, and tears welled up in my eyes. I went back to the bedroom, and gently shook Ron's shoulder.
"Honey," I whispered, "Honey, wake up."
I clicked on the small light next to the bed as Ron woke and asked if I was ok.
"I'm pregnant," I told him. Ron looked at me in disbelief and then a smile grew upon his face.
"What...How...Are you sure?!"
"Look, I just took the test again," and I showed him the test stick.
Ron hugged me tightly and pulled me next to him in the bed. We laughed a little, he held me tight, he congratulated me, he congratulated his role in the process, and then he kissed me on my forehead. "I love you, you will make a wonderful mother."
I was still smiling as I went over the dream and the events that unfolded. I wondered to myself, "What great and wonderful things? Brilliant businessman? Philanthropist? President?", and I drifted back to sleep.
I was still smiling as I went over the dream and the events that unfolded. I wondered to myself, "What great and wonderful things? Brilliant businessman? Philanthropist? President?", and I drifted back to sleep.
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