Chapter Two - getting help.
I didn't cry for long. Even if Josh wasn't aware of what was going on, my daughter Kenzie who was almost five at the time was very in tune to my emotions. Besides trying to be sensitive to Kenzie - I'm not a sit down and cry kind of girl. I'm a fixer and a fighter. Even if the situation wasn't fixable, I could learn and research about the beast who was taking over my son.
Information regarding autism was difficult for me to find. I had the newspaper article, and the few lines from my What to Expect - The Toddler Years book. Medical books had little more than what I had already read. Also, money was tight, so I didn't have access to a computer or the Internet. My father who lived on the east coast sent me a package of papers that he had printed out. I read everything I could get my hands on over and over again.
I made made a phone call to our local chapter of the Autism society. Twelve years ago, when I called the society, autism wasn't on the radar like it is today. The Autism Society was a small group of parents who had come together to help their children. Cathy, the president of the society ran the chapter out of her home. Speaking with another mom both comforted me and terrified me. She threw around so many acronyms that I felt like I was being served a bowl of alphabet soup - EA, SERT, ABA my head was spinning. Cathy was a wealth of knowledge, her son was school aged so she had experience working with the regions preschool services and the school board. But the best advice that Cathy gave me was in order to be the best advocate for my son, I needed to get real about Josh's needs. Our natural inclination as parents is to brag about our kids accomplishments. She told me that when advocating, yes be proud of Josh's milestones, but put more emphasis on where he still needed growth. She also warned me that the wait list for services was long.
Her warning proved to be true. It was a long wait. I think the first appointment was months later, at McMaster Children's Hospital for a hearing test. My sister in law drove us, and it was a surreal experience. The three of us were put in a sound proof room. I had never been in a room without sound before -the quiet was deafening. The way the test was carried out, speakers were in each of the corners of the room. The technicians in the sound booth would call out Josh's name from one of the four speakers. The natural response is to turn your head in the direction of the sound. They cautioned us not to move our heads so to be sure we were testing Josh's hearing, not his curiosity. Several times, in several ways they called out to Josh. Josh didn't respond at all, he didn't turn his head.
I looked at my sister in law. Oddly, I was happy that there was nothing from Josh. In my mind, his lack of response meant that he had a hearing problem. An easy fix with a hearing aid or worse case scenario, we could teach his sign language. A hearing problem seemed like a cake walk compared to autism.
Next, the technician chimed a series of bells in different tones. This time, there was a response from Josh. He looked up each and every time a bell rang. After the test was completed, I met with the technician. She explained to me that Josh had perfect hearing. How could that be? He never turned his head when they called his name. She explained to me that the chimes were all tones of the human voice. If Josh could hear the chimes, he could hear us.
Oh.
She suggested that we start speech and language services with the region. And if we were already on the wait list that we look into getting private speech and language services.
I didn't know how we were going to pay for it, but as soon as I got home I cracked open the yellow pages looked for a speech therapist. Preferably one who specialized in working with children with autism.
to be continued...
Monday, October 17, 2011
Wednesday, October 12, 2011
when our lives changed
October is Autism Awareness month in Ontario. Today, I am sharing the beginning of our story...
It was at my nephew's birthday party that it became undeniable that Josh was somehow different. At the time, terms like Aspergers, autism or nerotypical were foreign to me. But seeing Josh - even at the age of two, almost three - with a group of his peers, I knew something wasn't right. That day at the party, the other kids played and interacted with varying levels of success. However Josh did not; and I could see that it wasn't that he wouldn't, it was that he COULD NOT. Socially, even at this young age, I could see he was lost and terrified. He cried and threw at fit, and neither John or I could comfort him. Besides being embarrassed, I was heartbroken. My sweet son was lost and afraid and there wasn't anything I could do to help him - he wouldn't, couldn't let us in.
There were clues before the party. As they say hindsight is 20/20, and looking back there were signs right from babyhood. He would scream and panic at bath time - trying to bath him was like bathing a cat. He was happy to sit all by himself for hours at a time. Just sitting - staring off into space. When he finally started crawling, he would crawl off to the toy corner and look at the toys. He didn't play with the toys, just looked at them - occasionally he would line them up. And if someone would come to interact with him he would have a melt down. Most of the time he was in his own world.
After we arrived home from my nephew's party I was emotionally exhausted. Once the kids were in bed, I turned to John and asked if he was feeling what I was feeling.
"Do you really think there isn't a problem?" my eyes were pleading with him to understand what I was saying.
"Maybe there is." he said.
That night we had a long talk. John admitted that he was afraid. Afraid of what might be wrong. Afraid that if we went to professionals for help, that we would look like incompetent parents, and our kids would be taken away. We agreed that we give Josh a little more time. And if there still wasn't improvement, would start by taking Josh to our trusted family doctor.
The next morning, I woke up feeling refreshed, hopeful even. I was not in this alone. We could do this together. Together, we could pull Josh out of his world and back to our family. I convinced myself that maybe John was right - all Josh needed was a little more time.
It's odd how life unfolds. During this wait and see period, the local newspaper wrote an article on Autism. I read it and it struck a chord. The article struck a chord with others as well. Two ladies I worked with, my mother-in-law and my own mom all called and suggested I read it.
I didn't wait any longer. I called our family doctor and got Josh an appointment. At the appointment I answered questions about Josh's development thus far. I explained that it wasn't just his development delay that I was concerned about. I told him that I realized that all kids develop at their own pace, but what I saw with Josh was different. Odd. I asked if he thought it might be a hearing problem. Our doctor agreed that we should have a hearing test done. As well he was going to send us to a developmental pediatrician. I glanced at the chicken scratch notes Dr.C was jotting down. PDD? Phew, I thought to myself - he doesn't think it's autism.
When I got home, I looked up PDD in my What to Expect - The Toddler Years, my heart sank. There wasn't an entry for PDD, but it was mentioned under the autism entry.
Autism- What is it? A syndrome (a group of symptoms) rather that a clinical disease or condition. Autism is the most common form of Pervasive Developmental Disorder or PDD.
My head was spinning. Is PDD autism? Are there other PDD's? I couldn't just sit around, waiting for appointments. I needed answers. I found myself on the phone with the region's intake services. When the intake worker on the other end asked how she could help I stammered, "umm, could you tell me the difference between autism and PDD?"
This kind angel woman stayed on the line with me for over an hour. She explained to me that PDD was an umbrella term. All the developmental disorders stemmed off under the PDD umbrella. Autism wasn't the only developmental disorder, PDD-NOS, Aspergers and Rhett's were some of the others. She put me on wait lists for speech and language services, a behavioural screening, preschool services and special services at home. When I hung up the phone, I was drenched in sweat. I looked at Josh, who was zoned out in his own little word. He was oblivious to what was going on, but I wasn't. I sat there and and cried.
It was at my nephew's birthday party that it became undeniable that Josh was somehow different. At the time, terms like Aspergers, autism or nerotypical were foreign to me. But seeing Josh - even at the age of two, almost three - with a group of his peers, I knew something wasn't right. That day at the party, the other kids played and interacted with varying levels of success. However Josh did not; and I could see that it wasn't that he wouldn't, it was that he COULD NOT. Socially, even at this young age, I could see he was lost and terrified. He cried and threw at fit, and neither John or I could comfort him. Besides being embarrassed, I was heartbroken. My sweet son was lost and afraid and there wasn't anything I could do to help him - he wouldn't, couldn't let us in.
There were clues before the party. As they say hindsight is 20/20, and looking back there were signs right from babyhood. He would scream and panic at bath time - trying to bath him was like bathing a cat. He was happy to sit all by himself for hours at a time. Just sitting - staring off into space. When he finally started crawling, he would crawl off to the toy corner and look at the toys. He didn't play with the toys, just looked at them - occasionally he would line them up. And if someone would come to interact with him he would have a melt down. Most of the time he was in his own world.
After we arrived home from my nephew's party I was emotionally exhausted. Once the kids were in bed, I turned to John and asked if he was feeling what I was feeling.
"Do you really think there isn't a problem?" my eyes were pleading with him to understand what I was saying.
"Maybe there is." he said.
That night we had a long talk. John admitted that he was afraid. Afraid of what might be wrong. Afraid that if we went to professionals for help, that we would look like incompetent parents, and our kids would be taken away. We agreed that we give Josh a little more time. And if there still wasn't improvement, would start by taking Josh to our trusted family doctor.
The next morning, I woke up feeling refreshed, hopeful even. I was not in this alone. We could do this together. Together, we could pull Josh out of his world and back to our family. I convinced myself that maybe John was right - all Josh needed was a little more time.
It's odd how life unfolds. During this wait and see period, the local newspaper wrote an article on Autism. I read it and it struck a chord. The article struck a chord with others as well. Two ladies I worked with, my mother-in-law and my own mom all called and suggested I read it.
I didn't wait any longer. I called our family doctor and got Josh an appointment. At the appointment I answered questions about Josh's development thus far. I explained that it wasn't just his development delay that I was concerned about. I told him that I realized that all kids develop at their own pace, but what I saw with Josh was different. Odd. I asked if he thought it might be a hearing problem. Our doctor agreed that we should have a hearing test done. As well he was going to send us to a developmental pediatrician. I glanced at the chicken scratch notes Dr.C was jotting down. PDD? Phew, I thought to myself - he doesn't think it's autism.
When I got home, I looked up PDD in my What to Expect - The Toddler Years, my heart sank. There wasn't an entry for PDD, but it was mentioned under the autism entry.
Autism- What is it? A syndrome (a group of symptoms) rather that a clinical disease or condition. Autism is the most common form of Pervasive Developmental Disorder or PDD.
My head was spinning. Is PDD autism? Are there other PDD's? I couldn't just sit around, waiting for appointments. I needed answers. I found myself on the phone with the region's intake services. When the intake worker on the other end asked how she could help I stammered, "umm, could you tell me the difference between autism and PDD?"
This kind angel woman stayed on the line with me for over an hour. She explained to me that PDD was an umbrella term. All the developmental disorders stemmed off under the PDD umbrella. Autism wasn't the only developmental disorder, PDD-NOS, Aspergers and Rhett's were some of the others. She put me on wait lists for speech and language services, a behavioural screening, preschool services and special services at home. When I hung up the phone, I was drenched in sweat. I looked at Josh, who was zoned out in his own little word. He was oblivious to what was going on, but I wasn't. I sat there and and cried.
Sunday, October 2, 2011
Happy Birthday Grandma.
My daughter and I were chatting the other day about how often you should brush your hair. We both agreed that even though it's not recommended brushing 100 strokes a day, it just feels so good. I was reminded of a time where my hair was brushed over and over again.
I remember sitting on my grandparents front porch. It was coffee break on the last day of my week long stay with Grandma and Grandpa. I sipped my lemonade from the orange plastic tumbler, while she and Grandpa drank their coffees. I sat one step down, between my grandmother's legs, while she brushed my hair dry in the summer sun. I didn't have what you would call pretty hair. My hair was wavy and coarse, a mousy shade of brown. To top it off, literally, I had a double crown, so it looked like I had a small squirrel on top of my head. Anyways, that day sitting in the sun, sipping lemonade, with Grandma, I felt pretty. I don't know if I have ever felt more loved.
I think about Grandma a lot but especially at this time of year. Yesterday would have been her 88th birthday, but that's not why autumn reminds me of her. Fall was Grandma's favourite season. Thinking of the fall, without thinking of Grandma would be like fall with out the brilliant colours, or fall without the crisp cool temperatures.
With apologies to all the rock stars in my life - my husband, my parents, my children, my best girl friends, I am going on record as saying my maternal Grandmother is my all time favourite person. If you met her, you'd know why.
She was born Angelina Tibando. Being of Italian descent during a war where Italy was your enemy, couldn't have been easy. Not one to hang her head in shame, Grandma signed up to help the war effort. It was her army girlfriends who renamed her Cora - but I'm not sure why. The army was where my grandparents met. Grandma had slipped and fallen into a mud puddle, and Grandpa helped her up. They were married six weeks later.
When I think of what love looks like, I think of my grandparents. They loved each other beyond words. You could feel their love when you were in the room with them. When Grandpa died, Grandma slipped their love letters in his front pocket. "Grandma," I said to her, "Why are you sending them with Grandpa? Don't you want to read them?" No, she wanted to send them with Grandpa, that way when she's gone, none of us would be able to snoop. I assumed that the letters were filled with cute little I love yous, but the way Grandma blushed told me I was wrong.
The other thing I remember about Grandpa's funeral, is that Grandma asked us not to wear black. She herself wore a yellow dress, the exact same shade as a Black Eyed Susan. Grandma was sad, but strong. I knew that she would miss my grandfather, but I also knew that she was going to be okay.
Of course she would be okay. She wasn't about to sit around and wait to die. Seriously, this is what she said to me when I remarked one visit that I thought it was neat that she was trying to root a rose she had been given.
I don't usually remember Grandma with sadness. I miss her, but I know she would want us to remember her in her yellow dress, laughing, trying new things and exploring her world.
I remember sitting on my grandparents front porch. It was coffee break on the last day of my week long stay with Grandma and Grandpa. I sipped my lemonade from the orange plastic tumbler, while she and Grandpa drank their coffees. I sat one step down, between my grandmother's legs, while she brushed my hair dry in the summer sun. I didn't have what you would call pretty hair. My hair was wavy and coarse, a mousy shade of brown. To top it off, literally, I had a double crown, so it looked like I had a small squirrel on top of my head. Anyways, that day sitting in the sun, sipping lemonade, with Grandma, I felt pretty. I don't know if I have ever felt more loved.
I think about Grandma a lot but especially at this time of year. Yesterday would have been her 88th birthday, but that's not why autumn reminds me of her. Fall was Grandma's favourite season. Thinking of the fall, without thinking of Grandma would be like fall with out the brilliant colours, or fall without the crisp cool temperatures.
With apologies to all the rock stars in my life - my husband, my parents, my children, my best girl friends, I am going on record as saying my maternal Grandmother is my all time favourite person. If you met her, you'd know why.
She was born Angelina Tibando. Being of Italian descent during a war where Italy was your enemy, couldn't have been easy. Not one to hang her head in shame, Grandma signed up to help the war effort. It was her army girlfriends who renamed her Cora - but I'm not sure why. The army was where my grandparents met. Grandma had slipped and fallen into a mud puddle, and Grandpa helped her up. They were married six weeks later.
When I think of what love looks like, I think of my grandparents. They loved each other beyond words. You could feel their love when you were in the room with them. When Grandpa died, Grandma slipped their love letters in his front pocket. "Grandma," I said to her, "Why are you sending them with Grandpa? Don't you want to read them?" No, she wanted to send them with Grandpa, that way when she's gone, none of us would be able to snoop. I assumed that the letters were filled with cute little I love yous, but the way Grandma blushed told me I was wrong.
The other thing I remember about Grandpa's funeral, is that Grandma asked us not to wear black. She herself wore a yellow dress, the exact same shade as a Black Eyed Susan. Grandma was sad, but strong. I knew that she would miss my grandfather, but I also knew that she was going to be okay.
Of course she would be okay. She wasn't about to sit around and wait to die. Seriously, this is what she said to me when I remarked one visit that I thought it was neat that she was trying to root a rose she had been given.
I don't usually remember Grandma with sadness. I miss her, but I know she would want us to remember her in her yellow dress, laughing, trying new things and exploring her world.
 |
| me and my pet squirrel. |
 |
| grandma and I at the "falls" |
 |
| a love beyond words. |
Subscribe to:
Posts (Atom)