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. |
Thursday, September 29, 2011
Five Years.
I got off my bike and looked out at the vacant picnic area.
A family should be here, enjoying the last days of summer, laughing, playing, making memories.
Once upon a time it was our family that would have been here. Once upon a time. When we were whole. This weekend marked the fifth anniversary of my mother in laws passing.
There could have been 100 families here, it wouldn't have made a difference to how I felt- Empty and hollow, missing her so much.
Because my daughter misses the sound of her slippers scuffing across the floor. Because amid the clutter on my teenage son's dresser is a picture of his Grandma. Because a little boy holds on to the memory of a Grandmother who would give him treats in a Ziploc baggie each time he left her house. Because another little boy doesn't remember her at all. Because Charlie sleeps with the Bunny she gave him for Easter. Because her grandchildren have missed out on one of life's great treasures, but holding on to the few memories they have as tight as Charlie hangs on to Mr. Bunny.
Because Because Ray is now a widower. Trying to fit into a world of couples. Because he goes to the cemetery on Sunday mornings. Because he's alone.
Because her kids had to grow up in an instant. Because living without your mom, your cheerleader, your guide and compass is hard. Because time makes it easier, and then it hits you just how long it's been since she called your name or you heard the sound of her laughter.
Looking at where we once played, I felt so alone, and missed her so much.
A family should be here, enjoying the last days of summer, laughing, playing, making memories.
Once upon a time it was our family that would have been here. Once upon a time. When we were whole. This weekend marked the fifth anniversary of my mother in laws passing.
There could have been 100 families here, it wouldn't have made a difference to how I felt- Empty and hollow, missing her so much.
Because my daughter misses the sound of her slippers scuffing across the floor. Because amid the clutter on my teenage son's dresser is a picture of his Grandma. Because a little boy holds on to the memory of a Grandmother who would give him treats in a Ziploc baggie each time he left her house. Because another little boy doesn't remember her at all. Because Charlie sleeps with the Bunny she gave him for Easter. Because her grandchildren have missed out on one of life's great treasures, but holding on to the few memories they have as tight as Charlie hangs on to Mr. Bunny.
Because Because Ray is now a widower. Trying to fit into a world of couples. Because he goes to the cemetery on Sunday mornings. Because he's alone.
Because her kids had to grow up in an instant. Because living without your mom, your cheerleader, your guide and compass is hard. Because time makes it easier, and then it hits you just how long it's been since she called your name or you heard the sound of her laughter.
Looking at where we once played, I felt so alone, and missed her so much.
Tuesday, September 20, 2011
Finding Our Groove :: an update
We are a couple of weeks into the school year, and dare I say that we are finding our groove.
Charlie is now a full time student. In our school board, junior kindergarten and senior kindergarten are full day, every other day programs. Going every day without a break in between has been an adjustment for The Little Man and his class mates. Seriously? You've got to be kidding me? And, Again? Were some of the responses that the moms and I heard as we would wake our kids up in the morning. I'm pretty sure that Charlie has accepted this as his new normal. His only hope now, is for a snow day. Yes, one and a half weeks into school and he is praying for snow.
I fully expected a phone call from the high school on the first day about Josh. Instead, it was Kenzie texting me from the office. Apparently, she had chosen the wrong business course and had to make adjustments to her timetable. Kenzie is not the kind of kid who likes being in the office for any reason even if it's only a timetable change. Things worked out and she enrolled into another business course. It's a much better fit - the course content focuses on how business works. Speaking of The Kid and the business world, she is beginning to look for a part time job. Another milestone - time keeps marching on, nothing stays the same.
As for Josh, karma couldn't have been kinder to him on the first day. True, he left the house alone. But somewhere in between our house and the school, a few girls (the pretty, popular girls) called out to him and they all walked together. SCORE one for the little guy.
Josh's favorite subject is drama. In drama, his words and actions are scripted for him. For a guy who gets tounge tied, and can't find the right words or actions in everyday life, drama is a safe place to be. His first journal entry for drama made tears come to my eyes;
"Today is a beginning. I'm trying to have fun and I think I will achieve it. Drama is one of the apples of learning but this one is golden. I went with drama because I hope to learn something, to face my fears and to make my start wonderful. I would definitely go in tenth grade drama - honest truth."
I'm certain that there will be lots of bumps along the way to next June. But we've begun. And the start is always the hardest part.
Charlie is now a full time student. In our school board, junior kindergarten and senior kindergarten are full day, every other day programs. Going every day without a break in between has been an adjustment for The Little Man and his class mates. Seriously? You've got to be kidding me? And, Again? Were some of the responses that the moms and I heard as we would wake our kids up in the morning. I'm pretty sure that Charlie has accepted this as his new normal. His only hope now, is for a snow day. Yes, one and a half weeks into school and he is praying for snow.
I fully expected a phone call from the high school on the first day about Josh. Instead, it was Kenzie texting me from the office. Apparently, she had chosen the wrong business course and had to make adjustments to her timetable. Kenzie is not the kind of kid who likes being in the office for any reason even if it's only a timetable change. Things worked out and she enrolled into another business course. It's a much better fit - the course content focuses on how business works. Speaking of The Kid and the business world, she is beginning to look for a part time job. Another milestone - time keeps marching on, nothing stays the same.
As for Josh, karma couldn't have been kinder to him on the first day. True, he left the house alone. But somewhere in between our house and the school, a few girls (the pretty, popular girls) called out to him and they all walked together. SCORE one for the little guy.
Josh's favorite subject is drama. In drama, his words and actions are scripted for him. For a guy who gets tounge tied, and can't find the right words or actions in everyday life, drama is a safe place to be. His first journal entry for drama made tears come to my eyes;
"Today is a beginning. I'm trying to have fun and I think I will achieve it. Drama is one of the apples of learning but this one is golden. I went with drama because I hope to learn something, to face my fears and to make my start wonderful. I would definitely go in tenth grade drama - honest truth."
I'm certain that there will be lots of bumps along the way to next June. But we've begun. And the start is always the hardest part.
Tuesday, September 6, 2011
First Day
I’m trying to tell you about my life,
My tongue is twisted, more dead than alive,
My feeling have always been betrayed
I was born a little damaged man
Look what they’ve made.
Don’t you find,
That it’s lonely.
The corridor - you walk there alone
Life is a game you tried.
If life is a game, you’re tired.
Velvet Morning by The Verve.
Josh left today for high school. My tears came in waves last night. I’ve spent the better part of the last year focusing on making Josh’s transition to high school smooth. Working with the school so that resources and support would be put in place for him. So much planning and preparing. The tears came last night when I realized that none of it would help him on the first day. I realized that he will have to walk alone. I could do nothing more to help him.
His tears came this morning. I gave him a hug, and told him it was okay, that crying now was good because it meant that he was getting it out here at home in a safe spot. He calmed down and went back to his morning routine.
Just before it was time for Josh to leave he and I went out back to take a picture for his scrapbook. After our mini photo shoot, he turned to me, sad and scared and said, “I have no one to walk with.” I don’t know where I found the strength, but I didn’t cry. Instead I told him he would be fine, that I believed in him and that he wouldn’t be alone. Everyone was nervous today.
Josh and I went back inside to say good bye to the rest of the family. Kenzie gave him her words of wisdom - you have to talk to someone, don’t wait for people to talk to you. John gave his fatherly pep talk - just remember, everyone feels a little anxious, everyone will be thinking the same thing as you.
What is Josh thinking about? Gravy. One of his favourite things. That is what will get him through today. Gravy. There is a good possibility he will blurt out gravy.
I don’t spend a lot of time playing the blame game. Josh is in the autism spectrum. There is nothing I can do about it, and I don’t even know if I would try. It is part of who he is. Part of what makes him sweet, kind, trusting and truthful.
But today, I blame myself. I can’t fix autism. I cant fix the way the world sees him. I can’t fix the education system. I can’t give him friends. I can’t make this better for him. Today, as his mother I feel like I’ve let him down. That I passed on a combination of DNA that makes his life, this day harder for him.
The best I can do today is wait. And while I am waiting, I will make a roast beef dinner, complete with gravy.
My tongue is twisted, more dead than alive,
My feeling have always been betrayed
I was born a little damaged man
Look what they’ve made.
Don’t you find,
That it’s lonely.
The corridor - you walk there alone
Life is a game you tried.
If life is a game, you’re tired.
Velvet Morning by The Verve.
Josh left today for high school. My tears came in waves last night. I’ve spent the better part of the last year focusing on making Josh’s transition to high school smooth. Working with the school so that resources and support would be put in place for him. So much planning and preparing. The tears came last night when I realized that none of it would help him on the first day. I realized that he will have to walk alone. I could do nothing more to help him.
His tears came this morning. I gave him a hug, and told him it was okay, that crying now was good because it meant that he was getting it out here at home in a safe spot. He calmed down and went back to his morning routine.
Just before it was time for Josh to leave he and I went out back to take a picture for his scrapbook. After our mini photo shoot, he turned to me, sad and scared and said, “I have no one to walk with.” I don’t know where I found the strength, but I didn’t cry. Instead I told him he would be fine, that I believed in him and that he wouldn’t be alone. Everyone was nervous today.
Josh and I went back inside to say good bye to the rest of the family. Kenzie gave him her words of wisdom - you have to talk to someone, don’t wait for people to talk to you. John gave his fatherly pep talk - just remember, everyone feels a little anxious, everyone will be thinking the same thing as you.
What is Josh thinking about? Gravy. One of his favourite things. That is what will get him through today. Gravy. There is a good possibility he will blurt out gravy.
I don’t spend a lot of time playing the blame game. Josh is in the autism spectrum. There is nothing I can do about it, and I don’t even know if I would try. It is part of who he is. Part of what makes him sweet, kind, trusting and truthful.
But today, I blame myself. I can’t fix autism. I cant fix the way the world sees him. I can’t fix the education system. I can’t give him friends. I can’t make this better for him. Today, as his mother I feel like I’ve let him down. That I passed on a combination of DNA that makes his life, this day harder for him.
The best I can do today is wait. And while I am waiting, I will make a roast beef dinner, complete with gravy.
Tuesday, August 30, 2011
My Happy List
- Kit Kat Bars.
- Instagram.
- Camping.
- Photography.
- Sitting around the dinner table with my family.
- Coffee with a friend.
- Clouds.
- Slow dancing with my husband.
- A day at the beach.
- The change of seasons.
Tuesday, August 23, 2011
The Runaway Road
Sadly, I was never really a book of the month club member. Mom must have signed me up for the free, no obligation trial offer. Two books were all I ever got to read. I remember the outrage when a third book came in the mail.
"I bet they think that the books come and you will feel you have to keep them when your kid sees them. That's what they are counting on." Mom said to one of her friends on the phone, "Well, that's too bad, because it's going back!" I thought she was all talk. I believed that she would at least let me keep the third book, and cancel after that. Nope, true to her word the mystery book was returned. The third book was never taken out of the packaging.
But it's the second book that I've been thinking about. The second book I received in the mail was The Runaway Road, by Stan Mack. The story is about the Puddle Family who are packed up and ready to go on their annual vacation to the mountains. Just as the Puddles began their journey, the road had other plans. Instead the road runs away and takes them in a new direction. The road, who was sick of the mountains, decides it wants go to the beach. Metaphorically teaching The Puddles that life doesn't always goes as planned, sometimes even the deepest engraved routines change with life's winding road.
I can relate to the Puddle family, change is constant. And I can also relate to the road.
Just like the road in the story, I ran away this weekend. I made the list, packed the clothes, the toiletries, the first aid kit, the grocerys. I planned the meals and prepared dinners and salads, then I made a bee line out of town.
I ran away because in order refuel for life, I needed to separate from it. I left behind the distractions - the drama, Gramma's half empty messy apartment, the uncertainty of what September will bring. I left it all behind and found peace. When we returned Sunday afternoon I could breathe again. Ready to handle whatever changes the road may bring.
Wednesday, August 17, 2011
Remembering Gary
At Uncle Gary's ten year memorial, the family released balloons sent to heaven with messages for Gary. So many words left unspoken, what did I want to say.
Gary was my husbands uncle. I had been with John for nine years when Gary was diagnosed with a brain tumor. At that point in my marriage, I had established close relationships with my immediate in laws, but Gary was part of the extended family that I didn't see often. When I did see Gary, it was in a group setting, a family dinner or birthday party where there was little opportunity for a heart to heart that would allow me to know how special this man was.
Gary will always hold a special spot in my husbands heart. John's father passed away when he was only eight. Gary was one of three men who stepped in and acted as a male role model for my husband. When his uncle was sick, it was important for John to be there for the man and the family who had given him so much support in his grief. We both wanted to be a safe place to escape when the hurt was overwhelming, just like they were for him years earlier.
This is how I know Gary. I got to know Gary through his illness and his fight. From how he touched other people. From his legacy. I know the huge gaping hole he's left behind. A hole that time will never fill. But it makes me sad, I didn't know the man during the best part of his life.
The message on my balloon said "Dear Gary, I miss you and think of you often" but, I hope he knows I meant so much more.
Tuesday, August 16, 2011
a letter to my mother
This post is an excerpt from the love letter I gave my mom on her birthday:
Dear Mom, Today as we celebrate you I wanted to let you know how important you are in my life. Happy Birthday. Just like it is hard for me to believe that my kids are growing up, it's hard for me to believe that you have reached this milestone. You have traveled sixty five times around the sun, and with each passing you have learned a little bit more about yourself, with each time around you have grown more beautiful.
There are so many moments in my life where I felt your love and pride. Moments where you made me feel like I was the most important person in the world. And today, I am wondering did I leave you with the same feeling? Do you know how much I love you, how proud I am of you?
I am proud that you let your emotions flow so freely. I am proud that you are the kind of lady who laughs so hard she pees her pants. When something sad touches your heart, you cry just as easily. You live out loud. Experiencing your life to its fullest.
I admire how courageously adapted to the stages of your life. Whether the changes of your life were new and exciting or challenging and difficult, you have met them with an open heart. Always remaining optimistic about what the future may hold.
I am thirty seven years old. An adult. Gone is the mouthy child who thought she knew it all. In her place stands a woman who still looks to her mother as a compass when making decisions. A sail when she needs encouragement. And an anchor when she needs comfort and stability. Thank-you for these gifts. I love you so much, xoxo.
Tuesday, August 9, 2011
Summer's Growth
Summer is the space between springs promise and fall's bounty. Summer is the season to grow.
As a child I often suffered terrible growing pains in my legs, the kind that would wake you up from sleep. My mother would give me a baby aspirin and tuck me back into bed. I would whimper in my bed as I waited for the medicine to work. This would wake my older sister. She would get up and wrap my legs in the afghan that Aunt Marg knit. As long as I could remember the people who loved and cared for me always helped me with my growing pains.
I have experienced so much growth this year. It's not surprising. My one little word for 2011 was thrive:
(1) to make steady progress; prosper.
(2) to grow vigorously; flourish
Maybe I didn't think my word all the way through. Growth often uncomfortable. And while a baby aspirin and my legs lovingly wrapped in a blanket isn't going to help my growing pains, it is still my family that I am look to for comfort and encouragement.
When I was editing my pictures, putting together the collages for this post, I felt overwhelming feeling of love and pride. Seeing us camping, at the beach or just hanging out together, I know that John and I have built a strong foundation. A strong base that will support all of us as we grow and thrive.
Thursday, July 28, 2011
where to go from here
I haven't posted here in a while. It's not that I don't have the words, God knows that the words have been racing around my head, yelling so loud that I can't make them out. I have the words, and yet my voice is gone.
To quiet the noise, I've been working my ass off. Stripping and sanding a deck, planning birthday parties, packing, laundry, cleaning the kids rooms, anything. Busy work I call it. Like if I work hard enough, than that will make me enough.
Enough. I'm so sick and tired of trying to be enough, and the journey to enoughness. And enough by whose standards? Mine? Theirs? And who the hell are they anyway? I've read so many stories on the Internet of women who seem to step into their enoughness effortlessly. Like they wake up one morning and there they are, fully capable and confident in themselves. Never stepping back into the shadows of self consciousness. How is it so easy for them? What is stopping me from this awakening?
Is it supposed to be an awakening? A light bulb, aha moment? Because if it is, I've had a few of those. The problem is these flashes of light always seem to dim, and I am left questioning myself amid the dark self doubt that lurk in my mind.
I question the choices I've made, and even worse the choices I didn't make. I question why I am where I'm at. I am stay at home mom. This has been my job for the last seven years. In my job there are no pay stubs and no T4 slips. Monetary rewards are something I gave up in return for the opportunity to care for my family.
I know it was a choice that made a difference. I know it was enough. I mattered. I believe this, and yet part of me feels like I let myself down. That in caring for my family I lost my voice.
In September my job is being downsized. Charlie is going to be in school full time. My job, a big part of my identity will be eliminated. This chapter of my life is coming to a close and I don't know where my story is going.
I'm not sure where to go from here.
And if all this self doubt talk has you wanting to scream, "You stupid, spoiled girl. Get a grip, pull out your big girl panites and get on with life," don't worry you're not alone. I've said it to myself a thousand times.
I just need to quiet the noise in my head to clear so I can hear it.
To quiet the noise, I've been working my ass off. Stripping and sanding a deck, planning birthday parties, packing, laundry, cleaning the kids rooms, anything. Busy work I call it. Like if I work hard enough, than that will make me enough.
Enough. I'm so sick and tired of trying to be enough, and the journey to enoughness. And enough by whose standards? Mine? Theirs? And who the hell are they anyway? I've read so many stories on the Internet of women who seem to step into their enoughness effortlessly. Like they wake up one morning and there they are, fully capable and confident in themselves. Never stepping back into the shadows of self consciousness. How is it so easy for them? What is stopping me from this awakening?
Is it supposed to be an awakening? A light bulb, aha moment? Because if it is, I've had a few of those. The problem is these flashes of light always seem to dim, and I am left questioning myself amid the dark self doubt that lurk in my mind.
I question the choices I've made, and even worse the choices I didn't make. I question why I am where I'm at. I am stay at home mom. This has been my job for the last seven years. In my job there are no pay stubs and no T4 slips. Monetary rewards are something I gave up in return for the opportunity to care for my family.
I know it was a choice that made a difference. I know it was enough. I mattered. I believe this, and yet part of me feels like I let myself down. That in caring for my family I lost my voice.
In September my job is being downsized. Charlie is going to be in school full time. My job, a big part of my identity will be eliminated. This chapter of my life is coming to a close and I don't know where my story is going.
I'm not sure where to go from here.
And if all this self doubt talk has you wanting to scream, "You stupid, spoiled girl. Get a grip, pull out your big girl panites and get on with life," don't worry you're not alone. I've said it to myself a thousand times.
I just need to quiet the noise in my head to clear so I can hear it.
Friday, June 24, 2011
Growing Into Himself.
We are in the home stretch.
The last days of school, before summer vacation.
I've been so busy that all of a sudden it hit me. Every year summer breezes in, bringing a flood of emotion for me. I think about how much the kids have learned, how far they have come since September. June is the time of year I am so proud my heart could burst.
This year is a big one. Kenzie is writing exams, finishing her first year of high school. Charlie is finishing Kindergarten - moving on to Grade one and full time enrollment. And Josh is graduating grade eight.
Josh is heading off to high school.
I remember years ago, getting Josh ready for school, and getting the school ready for Josh. Our first meeting with the school was the June before he started Kindergarten. John and I walked in the conference room, and were met with a room full of faces. The principal, the vice principal, the special education teacher, a representative from the Halton autism team, his nursery school teacher, and us. The janitor wasn't able to make it.
I made it through that first meeting without having an emotional breakdown. But rest assured, there have been a couple since. Over the years, I have learned (the hard way) that regardless of how frustrated, angry or afraid I may be at these meetings, anything other than breaking out in mild sweat takes away from our credibility as Josh's advocates.
Watching Josh grow up is like watching a child grow up in slow motion. He needed speech therapy to learn how to talk. A physical therapist came to the school to teach him balance and coordination, not that he would use these skills. For a long time Josh was pulled out of gym class so that he could receive one on one time with the special education teacher learning literacy skills. As he grew older, time was set aside for Josh to have basic social skills taught to him. He learned and mastered the incredible five point scale. A tool to help him identify his triggers and moods, so that his melt downs at school would almost disappear.
Once Josh reached the middle school years, the stakes got higher. Kids who tolerated, and were even friendly to him started to pull away as they fought for their own footing on the popularity ladder. Josh struggled with feelings of depression as he tried so hard to learn how to fit in. He calls this time in his life as "the blues."
To help him gain the teen social skills he needed, I got to work, trying to teach the skills that the rest of us take for granted. I made him a set of Pokemon social skills cards. Each card had one of his favorite Pokemon characters with a social skill he could learn from that character. For example the Charizard card: Charizard's fire burns hotter if he has experienced harsh battles. Be like Charizard and remember - some days are harsh, but they will make you stronger. And from the Jynx card: Jynx's cries sound like human speech, but no one can understand it. - sometimes people don't understand why you cry. Try using your words to resolve your conflicts. By the way, I recently found out the man who created Pokemon is on the autism spectrum.
Together we worked through The Social Success workbook for Teens. We read The Rules of Life and The Social Skill Picture Book for High School and Beyond. He learned skills like how to start conversations, how to know when someone isn't interested in your story, how to call a friend, and which urinal is the best to choose in a public washroom (not the one RIGHT beside the other dude.)
Every gain Josh has made he has worked for. Hard. Over the years, he has had some awesome teachers and educational assistants that have worked along side of Josh and our family. Thank you to the teachers who have made a difference in Josh's life. Each teacher had a slightly different approach, each one sparking new paths of knowledge in Josh.
I have hope and I am optimistic that in high school the teachers will see the same sweet boy who is struggling to fit in and understand. I have hope that the teachers in his new school will also make a difference.
Hope. It's kind of a scary thing, because hope offers no guarantees.
I have seen how far he has come. I have watched him grow. Like I said before, raising a child on the spectrum is like raising a child in slow motion. So even without a guarantee, I know at the end of the next four years he will become a kind, capable, independent young man. He may have to work harder than his peers, "the blues" may return, but I know he is on his way. Growing into himself at his own pace.
Isn`t that all any of us as parents can hope for?
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Once Josh reached the middle school years, the stakes got higher. Kids who tolerated, and were even friendly to him started to pull away as they fought for their own footing on the popularity ladder. Josh struggled with feelings of depression as he tried so hard to learn how to fit in. He calls this time in his life as "the blues."
To help him gain the teen social skills he needed, I got to work, trying to teach the skills that the rest of us take for granted. I made him a set of Pokemon social skills cards. Each card had one of his favorite Pokemon characters with a social skill he could learn from that character. For example the Charizard card: Charizard's fire burns hotter if he has experienced harsh battles. Be like Charizard and remember - some days are harsh, but they will make you stronger. And from the Jynx card: Jynx's cries sound like human speech, but no one can understand it. - sometimes people don't understand why you cry. Try using your words to resolve your conflicts. By the way, I recently found out the man who created Pokemon is on the autism spectrum.
Together we worked through The Social Success workbook for Teens. We read The Rules of Life and The Social Skill Picture Book for High School and Beyond. He learned skills like how to start conversations, how to know when someone isn't interested in your story, how to call a friend, and which urinal is the best to choose in a public washroom (not the one RIGHT beside the other dude.)
Every gain Josh has made he has worked for. Hard. Over the years, he has had some awesome teachers and educational assistants that have worked along side of Josh and our family. Thank you to the teachers who have made a difference in Josh's life. Each teacher had a slightly different approach, each one sparking new paths of knowledge in Josh.
I have hope and I am optimistic that in high school the teachers will see the same sweet boy who is struggling to fit in and understand. I have hope that the teachers in his new school will also make a difference.
Hope. It's kind of a scary thing, because hope offers no guarantees.
I have seen how far he has come. I have watched him grow. Like I said before, raising a child on the spectrum is like raising a child in slow motion. So even without a guarantee, I know at the end of the next four years he will become a kind, capable, independent young man. He may have to work harder than his peers, "the blues" may return, but I know he is on his way. Growing into himself at his own pace.
Isn`t that all any of us as parents can hope for?
Monday, June 13, 2011
On His Way
This morning Josh left for his 4 day trip to Quebec with the school. He packed light, one duffel bag, one backpack, but even with his light load I'm sure he is ready for this.
I'm sure he's ready. I'm sure he will be okay. I keep telling myself this.
I explain having a child on the spectrum as having a child growing up in slow motion. Josh has typically been slower than other boys to reach his milestones. My husband and I knew that for Josh's last year of grade school, Josh's resiliency skills and social skills would need to be strengthened. His readiness for the Quebec trip, and his transition into high school have been the focus of our case conferences.
The gains he has made this year amaze me. That's not to say that he hasn't had his moments, but considering what he has to deal with, but I couldn't be prouder how he has handled himself.
So, I should be confident, and I am. I am not nearly the crying, sobbing mess I was this time last year when the first born had her trip to Quebec. But just to be sure, I picked up The Orb in Josh's room and asked if he would be fine. Unclear. Great. Just a word of advice, don't second guess your intuition with a toy fortune teller. He will be fine, he is ready, he can do this.
I'm sure he's ready. I'm sure he will be okay. I keep telling myself this.
I explain having a child on the spectrum as having a child growing up in slow motion. Josh has typically been slower than other boys to reach his milestones. My husband and I knew that for Josh's last year of grade school, Josh's resiliency skills and social skills would need to be strengthened. His readiness for the Quebec trip, and his transition into high school have been the focus of our case conferences.
The gains he has made this year amaze me. That's not to say that he hasn't had his moments, but considering what he has to deal with, but I couldn't be prouder how he has handled himself.
So, I should be confident, and I am. I am not nearly the crying, sobbing mess I was this time last year when the first born had her trip to Quebec. But just to be sure, I picked up The Orb in Josh's room and asked if he would be fine. Unclear. Great. Just a word of advice, don't second guess your intuition with a toy fortune teller. He will be fine, he is ready, he can do this.
Thursday, June 9, 2011
Almost everyone...
A few weeks ago, we were able to have a family barbecue at my sister in laws home. She lives on a rural property just outside of the city, so barbecues at her home definitely have a country charm. I mean, I can have chicken at my barbecue, but it would be on the grill, not running around the backyard.
I planned a sleep over, because hubby was on call and I didn't want to drive home in the dark. Okay, let's be honest here, I didn't want to drive in the dark AND, I wanted to drink - what's a family barbecue without alcohol?
Everyone hoped that John would be able to make an appearance. It turned out that for some reason, his on call was super busy, and he was only able to pop in for an hour or so, get some food, and head out again. But for an hour or so, we were able to have almost everyone together.
Almost everyone. Missing was the family that started it all. Gramma and her family. Gramma's daughter, Gail, my mother in law. Gramma's son, Gary, and of course her husband, Grandpa. I looked out the window while I was washing up some dishes, and felt an overwhelming pang of sadness. I couldn't help but think how much the "original" family would have loved to be there, and how proud they must be of the family they have left behind.
Friday, May 27, 2011
Little Monkeys
I think I am a pretty good mom. I am certainly proud of my kids; I love and respect them. In raising my children, each have helped reveal parts of myself that I never knew existed - or maybe these parts would never have existed with out my three kids. What I am waiting for is one of the three kids to help reveal that part of me that loves the indoor play experience.
Yes, I am that mom. The one who will make mud pies, go to the beach, cheer my kids on, cry with them, the mom who will try her best not to take over the science project (even though I want to). I am the mom who will get down on the floor and play with my kids. I am the mom who attends school concerts and graduations, in a stuffy over crowded auditorium, tearing up and beaming with pride. But, I am not the mom who loves the indoor gym.
Last week, with The Little Man's cousin visiting from Nova Scotia we planned a field trip to Little Monkey's, an indoor play centre here in our town. I couldn't help but notice the similarities between the indoor gym and a night club. Both have big lounge-y leather couches. Both have an area to sweat it out (one a dance floor, one a large climber.) Both have rooms off to the side for private parties. Both have an arcade section - the play centre equipped with air hockey and the bar with pool tables. And both the indoor gym and the night club have a bar. Now only if the indoor gym served alcohol, then maybe I would be that mom. The mom who loves a Little Monkey's type experience.
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| the reason why I go to these places: the joy on the kids faces. totally worth it. |
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| breaking for lunch. and yes, i was that mom - the one who packed "fruit" gummies, otherwise known as 100% pure refined sugar. |
Wednesday, May 11, 2011
Bravo
At the zoo on Sunday I was inspired by this artist. His commitment to his art, his honesty, and his courage to be himself, encouraged me to do something I never do. I approached him and asked if I could take his photograph. I think it is my favorite shot of the day.
Tuesday, May 10, 2011
32/365 - 42/365
32/365 April 25 - Basket Case - Laundry is one of those never ending household chores. As soon as it's completed, the piles start again. I spent my day sorting, soaking, washing, folding and putting away. Not very exciting, but productive and I feel like I've beat the beast.
33/365 - April 26 - Gifts - I like to give hand made gifts. I am a photographer. Probably enough said (and most likely, too much information ~hehe)
27/365 - April 27 - Ordinary - This could be any day in any town. But this random, out of focus picture reflects how I've been feeling lately.
35/365 - April 28 - Muse - This tea light that hangs from a tree in our back yard has become my muse. I don't know what draws me to it, but I've photographed it many times. This morning I captured it with the sun rising in the background and the morning dew sparkling on the glass.
36/365 - April 29 - Intimacy - A perfect find on our anniversary, but for obvious reasons (three kids) this statue remained in the garden centre we found it at.
37/365 - April 30 - Just Us - For a few more hours its just us. Leaving makes me want to cry. This little over nighter reminded me the importance of getting away. I can't wait to get camping season started.
38/365 - May 1 - One Candle, Eighty-Five Years. - I love the interaction in this picture of John and his Gramma. He is looking at her in such a sweet, protective way - and she looks so excited to blow out her candle and eat her cupcake!
39/365 - May 2 - Monday Craft Day - The Little Man showing off his artistic ability.
40/365 - May 3 - Kind Drop - Cards from Kind Over Matter. Read more here.
41/365 - May 4 - Brown Eyes and Freckles - The Little Man and I were snuggling in my bed this morning, and I thought that he looked particularly sweet.
42/365 - A Perfect Spring Day - I love when the trees first come into foliage. The trees look like they have been dabbed with bright green paint. Add a bright blue sky, fluffy white clouds and a little sun flare, and you have my idea of a perfect spring day.
Saturday, May 7, 2011
Making Time
Hubby and I were able to sneak away on a sleepover date night to celebrate our sixteenth wedding anniversary.
(Thanks Cindy for taking my rug rats!) It was so needed and so appreciated.
Twenty four hours of uninterrupted time with my husband. Focusing on us. Reminiscing, laughing, relaxing. Taking time to care for our most important connection. Making time for each other.
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| a few pictures from our mini vacation - even the artwork screamed love, check out the bunnies and the rock statue! |
Kind Drops
The past few weeks have been tough. I could blame it on the cold, wet, windy April days ~ but more likely my slump had more to do with feeling pushed to the limit than the weather. So I pushed back. With kindness.
Kind Over Matter is a site dedicated to inspirational stories, creativity, and of course kindness. KOM is overflowing with positivity, a warm place to go with a cup of coffee and re-fuel. One of my favorite features (and the one that got me hooked on the site) are the printable kind drops.
I've wanted to do my own Kind Drops for a while now. My crappy week gave me the push I needed to go out and create my own positivity. I dropped my kindness cards at the library, the dollar store, Tim Horton's, the park and the school bulletin board.
I loved doing these random acts of kindness. As I dropped my kind cards, I wondered to myself, who would find them? Was it possible that these little cards would be enough to turn someones day around? I hoped so. It certainly made me feel better.
How do you push back when life has got you down?
Thursday, April 28, 2011
Sixteen
we were young,
best friends,
the first of our friends to get married.
i'm pretty sure that at least a few
of our wedding guests
of our wedding guests
thought that we would fall apart.
and to be honest, even though
and to be honest, even though
i loved him and he loved me,
part of me questioned
what the heck i was doing?
i believed that anything i wanted to do in my life,
i wanted to do with john beside me.
cheering me on, laughing with me, loving me.
and through it all,
the hard times that were harder either of us expected,
the good times that have been sweeter than i could ever have hoped for,
the hard times that were harder either of us expected,
the good times that have been sweeter than i could ever have hoped for,
we didn't fall apart.
i still believe that anything that i want to do in life
i want to do with john beside me.
cheering me on, laughing with me, loving me,
falling together.
i still believe that anything that i want to do in life
i want to do with john beside me.
cheering me on, laughing with me, loving me,
falling together.
23/365 - 31/365
23/365 - April 16 - Drops on Dogwood -
24/365 - April 17 - Desiderata
25/365 - April 18 - Boogie Nights
26/365 - Trickery - With some fancy editing this picture that was taken in the middle of the day, looks like it happened in the wee hours of the night.
27/365 - April 20 - Rain Drop
28/365 - April 21 - Soar
29/365 - April 22 - Earth Day Nature Walk
30/365 - April 23 - RUN!!!
Monday, April 25, 2011
Easter Weekend
We had a great weekend and I took a TON of pictures. I wanted to share them all, so here it is; my first video post. Enjoy!
Sunday, April 24, 2011
One Day, Someday.
I stood on my front lawn, my chest shaking and tears welling up in my eyes. Above me, a parade of four seater sesnas were circling overhead. My daughter was in one.
Kenzie was on a grade nine geography trip. As part of her study on urban sprawl, the teacher arranged a field trip to fly around the city.
Kenzie was on a grade nine geography trip. As part of her study on urban sprawl, the teacher arranged a field trip to fly around the city.
What was it about my daughter flying directly above me that caused my emotions to bubble to the surface? A sense of relief? Pride? Absolute and pure joy? All of those reasons, plus something so much more, a feeling I can't quite put into words, but reminds me of a line from one of my favorite story books, Someday by Alison Meghee.
"Someday you will look at this house and wonder how something that feels so big can look so small,"
And one day, someday, our home wont look small because she is looking out of a plane window. Our home will look small because she has grown into the beautiful woman I know she will be. One day, someday, she will have her own successes, home, family and life - and it's my hope that when she thinks back to her childhood, she will be filled with feelings so intensely joy full that her own emotions bubble to the surface.
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