For four years I had worried, obsessed, fretted and perseverated. AWEnestly, it was almost as likely that this wonderful psychologist would give me a diagnosis as well as Ryan. I assure you, there are probably several diagnoses in the DSM-IV that would fit this neurotic mother. So here it was, today was the day. I wish you could have been in my head, of course if you had been I would probably be typing this from a psych hospital. In the moments it took for me to cross the psychologists office, sit in a chair and wait for her to speak, my brain went from one extreme to the next. Assuring myself Ryan was fine and this was all a mistake to telling myself if she says the words group home I'm jumping out the window (knowing full well that only two stories up the chance of sudden death were minimal). So with hands trembling, stomach gurgling and eyes desperately trying to hold back the tears, I waited for her to speak. I'm sure my fear was palpable.
This kind, wonderful mom psychologist looked at me and said, "Remember, regardless of what we discuss today, Ryan is the same little boy he was before you walked into my office." And so the tears began. That did not sound like a disclaimer you make before saying, "your son is smart, fabulous and completely normal and he has a bright, happy future in front of him". You see, I was hoping along with all the other wonderful qualities of this fabulous psychologist, we could also add fortune teller. She discussed Ryan's testing and what the tests and her perception pointed toward. I braced myself, white knuckling the edge of the seat. This was it, THE moment. While trying not to vomit, I never took my eyes off her mouth as I waited for her lips to form the A sound and say one of the two A words I had been obsessing over for two years, Autism or Aspergers, but the A sound never came. Instead the psychologist pursed her lips and a distinct "puh" sound came out of her mouth as she said...Pervasive Developmental Disorder Not Otherwised Specified, more typically known as PDD-NOS. PDD-NO what?!
Wow! There were certainly a lot of letter sounds that came out of her mouth, but I distinctly did NOT hear an A. Part of me was rejoicing, in my head I was singing, "She didn't say The A Word, she didn't say The A Word.", but the other part was going, "Whoa, stop singing, since you have no idea what this P Word means." Was the P Word better than The A Word? Was it worse? Can we "fix" it? Oh, how naive, scared and quite AWEnestly, stupid I was back then.
The pyschologist explained in her kind, sweet manner that autism is a Pervasive Develpmental Disorder. In order to make a diagnosis for Autism or Aspergers, certain criteria must be met. According to the Diagnostic and Statistical Manual of Mental Disorders IVth Edition (DSM-IV), "when there is impairment in the development of reciprocal social interactions or verbal and non-verbal communication skills, or when stereotyped behaviors, interests and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder such as Classic Autism or Aspergers, then a diagnosis of PDD-NOS is used. PDD-NOS is often referred to as atypical autism.
This kind, wonderful mom psychologist looked at me and said, "Remember, regardless of what we discuss today, Ryan is the same little boy he was before you walked into my office." And so the tears began. That did not sound like a disclaimer you make before saying, "your son is smart, fabulous and completely normal and he has a bright, happy future in front of him". You see, I was hoping along with all the other wonderful qualities of this fabulous psychologist, we could also add fortune teller. She discussed Ryan's testing and what the tests and her perception pointed toward. I braced myself, white knuckling the edge of the seat. This was it, THE moment. While trying not to vomit, I never took my eyes off her mouth as I waited for her lips to form the A sound and say one of the two A words I had been obsessing over for two years, Autism or Aspergers, but the A sound never came. Instead the psychologist pursed her lips and a distinct "puh" sound came out of her mouth as she said...Pervasive Developmental Disorder Not Otherwised Specified, more typically known as PDD-NOS. PDD-NO what?!
Wow! There were certainly a lot of letter sounds that came out of her mouth, but I distinctly did NOT hear an A. Part of me was rejoicing, in my head I was singing, "She didn't say The A Word, she didn't say The A Word.", but the other part was going, "Whoa, stop singing, since you have no idea what this P Word means." Was the P Word better than The A Word? Was it worse? Can we "fix" it? Oh, how naive, scared and quite AWEnestly, stupid I was back then.
The pyschologist explained in her kind, sweet manner that autism is a Pervasive Develpmental Disorder. In order to make a diagnosis for Autism or Aspergers, certain criteria must be met. According to the Diagnostic and Statistical Manual of Mental Disorders IVth Edition (DSM-IV), "when there is impairment in the development of reciprocal social interactions or verbal and non-verbal communication skills, or when stereotyped behaviors, interests and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder such as Classic Autism or Aspergers, then a diagnosis of PDD-NOS is used. PDD-NOS is often referred to as atypical autism.
Well, this certainly explains why for years other professionals weren't certain if Ryan actually had autism or not. He did not "present" as a stereotypical child with Classic Autism or Aspergers. I cried...a lot and the psychologist tried to comfort me by saying how bright, sweet and wonderful Ryan was and with the right support from us and other professionals, he would be just fine. We thanked her and she told us to call if we had any questions (Big Mistake. Poor woman, she should have changed her name, phone number and the location of her office after uttering those words to a whacko like me) then Dan held me in the parking lot as I cried big, ugly tears. We got home and one of my medal wearing girlfriends who was watching the boys for us, took one look at me, pulled me into her arms and assured me that no matter what you call "it", Ryan would be great because he has me for a mother. Those words weren't very reassuring at the time since I felt very sure I was coming completely unglued and just like Humpty Dumpty, I feared all the kings horses and all the kings men couldn't put me back together again. How could my girlfriend know Ryan would be "ok"? How could anyone? As I looked at my sweet, beautiful boy playing with his Thomas engines, I feared an uncertain future for him.
The psychologist warned us, ok fine, she warned me (she is a pychologist after all so it didn't take her long to figure out I was a nut) not to go home and immediately Google PDD-NOS because it could be very discouraging since many kids with this diagnosis are low functioning cognitively and although Ryan's verbal IQ was low, his non-verbal IQ put him in the high range of intelligence. With Ryan's language difficulty and his need to ALWAYS be right, some of the testing did not accurately match his intellectual ability. The psychologist gave us an example. During the testing, she asked Ryan what a clock was. I chuckled to myself, thinking this had to be a no brainer for him since he has been telling time since he was three. The psychologist informed us she was amazed by his response. Ryan knew perfectly well what a clock was, and his brain could see a picture of a clock, but his brain could not find the words to describe it, so he looked at her and said, "Can I draw it for you?" The psychologist told us she had never had a child do this before. To her it indicated that Ryan (and I'm sure many kids on the spectrum like him) absolutely knew what a clock was, however, he just didn't have the ability to tell her.
Of course being the neurotic mother that I am, I completely ignored the psychologists warning and promptly Googled PDD-NOS. Sh**! She was right. I should have thrown the computer out the window to avoid my uncontrollable, crazy mind. I saw words like, "severe language deficits", "significant social impairment", and "uneven skill development" and began freaking out. Then I did what any other internet saavy hypochondriac does, I looked until I found words more appealing and comforting to me like "mild", "high functioning" and "subthreshold autism" which made me sigh a little relief, so I quickly turned off the computer and walked away before my OCD fingers kept surfing.
As a parent, when you are told your child has an autism spectrum diagnosis of any kind, it takes time to process it, understand it, and let the reality of it sink in. Throw in a little neurosis, hypochondria and OCD, and as mother, it took me a little longer. They say hindsight is 20/20. What I wouldn't give to have that 20/20 hindsight while sitting in that chair of that wonderful psychologist's office (by the way, she did not move her office, she did however, move her home, which I promise had nothing to do with me and my concerns and questions...at least I don't think so). If I only would have known that this PDD-NOS diagnosis was not as much of a curse for my son, as it was a new way of seeing the world for his mother. My boy did not need "fixed" because he was not broken. Yes, he will struggle in the areas of making and keeping friends and chances are he will never care who the homecoming king and queen are, but the way he sees the world is a gift. Ryan does not lie, he does not cheat, he speaks what is on his mind (oh, does he ever) and his heart feels more than any person reading this blog.
Before stepping into that psychologists office that fateful day, I was unaware of the Autism puzzle piece, the blue lights that light up cities all over the world to raise awareness of this condition that effects 1 in 88 children and I had no idea that April meant anything more than warm, spring days. Today, however, I am all too aware. April is Autism Awareness Month and now that I have left my old friends Denial and Clueless behind, I wonder if April was chosen for a reason or if it was just some government agency's random choice to pick April to raise awareness of these amazing children and adults living with autism.
I like to think April was chosen for a reason. After the dormancy of a long, dreary, dark winter, April is often when you see the first transformations of springtime. The days are warmer, brighter and longer. April is a time of renewal and awakening. The flowers that wilted in the fall bloom once again and the leaves we saw fall to the ground are transformed into beautiful blossoms. It is a time for rebirth, the fuzzy caterpillar who once only crawled along the ground breaks out of the chrysalis transformed into a beautiful butterfly soaring through the trees. After spending weeks in their mother's nest, the baby birds test their wings and leave the nest for a new beginning. The local gyms are filled with women trying to transform their bodies, that packed on too many holiday cookies, for bikini season (myself included) and our neighborhoods, which just a month ago looked desolate, are filled with the sounds of children laughing and playing while the smell of grilling red meat lingers in the air.
Yes, April is the perfect time to recognize and transform our way of thinking when it comes to boys and girls, men and woman living with autism. For decades those affected by autism were locked in darkness, often placed in institutions and feared by a world that didn't understand them. Parents were often told their child's autism was caused by poor parenting and there was nothing they could do to help them. We have a come a long way since then, but we still have a long way to go. April is a perfect time for us neurotypicals to try and view the world in a new way. As a mother who appreciates and applauds this month, I know better than anyone that until you open your heart and your mind and see the world like someone with autism does, you are missing out and AWEnestly, I feel sorry for you. So, on this first day of Autism Awareness Month, I want to take a moment to thank Ryan. My AWEsome son has opened my heart and my mind to a beautiful way of seeing the world that I never would have known had I not been blessed with him. What a gift he has given me! A once worried, nusty mom who sat wringing her hands in a psychologist's office finally stopped asking, "Will he....?" and started cheering, "He will!!" And with my own transformation, I have been blessed to witness first hand how a scared, confused, anxious caterpillar broke out of his confined chrysalis and transformed into a beautiful butterfly soaring to heights I feared weren't possible. So take a minute this month to recognize kids like my Ryan and above all always remember...."Different, but not less."
Of course being the neurotic mother that I am, I completely ignored the psychologists warning and promptly Googled PDD-NOS. Sh**! She was right. I should have thrown the computer out the window to avoid my uncontrollable, crazy mind. I saw words like, "severe language deficits", "significant social impairment", and "uneven skill development" and began freaking out. Then I did what any other internet saavy hypochondriac does, I looked until I found words more appealing and comforting to me like "mild", "high functioning" and "subthreshold autism" which made me sigh a little relief, so I quickly turned off the computer and walked away before my OCD fingers kept surfing.
As a parent, when you are told your child has an autism spectrum diagnosis of any kind, it takes time to process it, understand it, and let the reality of it sink in. Throw in a little neurosis, hypochondria and OCD, and as mother, it took me a little longer. They say hindsight is 20/20. What I wouldn't give to have that 20/20 hindsight while sitting in that chair of that wonderful psychologist's office (by the way, she did not move her office, she did however, move her home, which I promise had nothing to do with me and my concerns and questions...at least I don't think so). If I only would have known that this PDD-NOS diagnosis was not as much of a curse for my son, as it was a new way of seeing the world for his mother. My boy did not need "fixed" because he was not broken. Yes, he will struggle in the areas of making and keeping friends and chances are he will never care who the homecoming king and queen are, but the way he sees the world is a gift. Ryan does not lie, he does not cheat, he speaks what is on his mind (oh, does he ever) and his heart feels more than any person reading this blog.
Before stepping into that psychologists office that fateful day, I was unaware of the Autism puzzle piece, the blue lights that light up cities all over the world to raise awareness of this condition that effects 1 in 88 children and I had no idea that April meant anything more than warm, spring days. Today, however, I am all too aware. April is Autism Awareness Month and now that I have left my old friends Denial and Clueless behind, I wonder if April was chosen for a reason or if it was just some government agency's random choice to pick April to raise awareness of these amazing children and adults living with autism.
I like to think April was chosen for a reason. After the dormancy of a long, dreary, dark winter, April is often when you see the first transformations of springtime. The days are warmer, brighter and longer. April is a time of renewal and awakening. The flowers that wilted in the fall bloom once again and the leaves we saw fall to the ground are transformed into beautiful blossoms. It is a time for rebirth, the fuzzy caterpillar who once only crawled along the ground breaks out of the chrysalis transformed into a beautiful butterfly soaring through the trees. After spending weeks in their mother's nest, the baby birds test their wings and leave the nest for a new beginning. The local gyms are filled with women trying to transform their bodies, that packed on too many holiday cookies, for bikini season (myself included) and our neighborhoods, which just a month ago looked desolate, are filled with the sounds of children laughing and playing while the smell of grilling red meat lingers in the air.
Yes, April is the perfect time to recognize and transform our way of thinking when it comes to boys and girls, men and woman living with autism. For decades those affected by autism were locked in darkness, often placed in institutions and feared by a world that didn't understand them. Parents were often told their child's autism was caused by poor parenting and there was nothing they could do to help them. We have a come a long way since then, but we still have a long way to go. April is a perfect time for us neurotypicals to try and view the world in a new way. As a mother who appreciates and applauds this month, I know better than anyone that until you open your heart and your mind and see the world like someone with autism does, you are missing out and AWEnestly, I feel sorry for you. So, on this first day of Autism Awareness Month, I want to take a moment to thank Ryan. My AWEsome son has opened my heart and my mind to a beautiful way of seeing the world that I never would have known had I not been blessed with him. What a gift he has given me! A once worried, nusty mom who sat wringing her hands in a psychologist's office finally stopped asking, "Will he....?" and started cheering, "He will!!" And with my own transformation, I have been blessed to witness first hand how a scared, confused, anxious caterpillar broke out of his confined chrysalis and transformed into a beautiful butterfly soaring to heights I feared weren't possible. So take a minute this month to recognize kids like my Ryan and above all always remember...."Different, but not less."
A mom who has been transformed to finally see the AWEsome world Ryan has shown me.
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