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Thanks!
Blessings,
YogaMother
Saturday, August 15, 2009
Wednesday, August 12, 2009
My Journey with Joseph (transcript of my speech)
I am the mommy of a bright and beautiful 5 year old boy.
Conjures up images of making peanut butter sandwiches and putting band aids over injured knees, doesn't it?
Well, that is the kind of mommy I am. But in the last few years, motherhood for me has taken a turn that is very different from what most mommies face.
You see, for the last few years, I have been battling – furiously! -- to save my child's life.
Joseph arrived the way most children arrive. He said his first word, "duck," about the same age most children say their first word. He took his first steps, at the home of a friend, at about the age that most children take their first steps.
But as Joseph neared the age of 2, something started to change for him. He began to lose interest in his toys and his books. His communication diminished to the very basics. When we took him out, particularly to "fun" gatherings with lots of other kids, he would scream and scream at the top of his lungs. The only way to calm him down was to bring him home.
Blue Eyes and I were scared. Joseph was our only kid. We didn't know what was normal and what wasn't, but we felt that something was wrong. We didn't know who to turn to or what to do.
Shortly after Joseph turned 2, a psychiatrist at the prestigious MIND Institute gave us a diagnosis: mild autism. It felt like a death sentence.
Indeed, they say that getting this diagnosis is second, in pain and grief, only to hearing that one's child has a terminal illness. In many ways, it felt like a death. The child we knew was leaving us, slipping behind a veil that we couldn't reach through. Our hopes, desires and expectations were all murdered with that single word: autism.
Many children on the autistic spectrum have what are called co-occurring disorders. Joseph's was that he didn't sleep well. He'd wake up 2, 3, 4 times a night and be awake sometimes for hours at a time. This meant that, pre-diagnosis, I was already a walking zombie. After the diagnosis I would wake when Joseph did but would wake myself up as well – this time with a huge gasp, as I realized yet again that my son had autism, and I didn't know what to do.
We live in a wonderful community. There is a department here called Infant Program which works with children from the ages of 0-3. They rallied around us, and every weekday someone came to play with Joseph, to work with him. Together, slowly, we managed to reel him back from the dangerous precipice he was sliding down. We got a little more eye contact, a little more engagement. Whereas before we'd been feeling only despair, we now started to feel a little bit of hope.
We began to research, to explore, to ask questions. We tried several behavioral therapies and chose one, Relationship Development Intervention, that we love and still use on a daily basis.
As we continued to investigate, we learned something that has made a huge impact in our journey with Joseph.
We discovered that, whereas most doctors know nothing about autism and will tell you it can't be treated physiologically, a small percentage is now stepping forward to say something completely different.
These doctors are saying that, almost across the board, children with ASD have similar physiological symptoms: severe gut disorders, significant levels of heavy metals in their systems, and major food allergies.
If you look at only the food allergies, you see that these kids crave what they are allergic to: the gluten in wheat and other grains, and the casein in dairy products. These foods create an opiate-like reaction in their brains – it zones them out. Isn't that one of the major components of autism?
By the time Joseph was 3, he was completely off all gluten and casein, and he remains so to this day. We found one of these specialist doctors. She was 3.5 hours away. We made the trek to see her often. She charges $350 an hour, and on top of that there are the lab tests, the supplements, the medicines, and all the other treatments she wanted us to try. We took out a second mortgage in order to afford this.
We are not alone in this. All families with autism face the pain of the diagnosis, the grief of their child slipping away, the horror of the co-occurring disorders and, should they choose to go this route, the incredible financial stress of affording these doctors and the leading-edge treatments…which, by the way, insurance virtually does not cover.
Joseph is now 5½. He has made great strides. For one thing, he generally sleeps through the night. It's amazing how well you can sleep when your stomach doesn't hurt.
He goes to a typical preschool, where he is the only child with autism. Visiting teachers come and can't pick him out. In many ways, he is indistinguishable from his peers. He plays tag, hide and seek, and imaginary games with his friends. When I come to pick him up, he runs to me with a happy "I love you, Mommy!" smile that no parent of an autistic child will ever take for granted.
I would like you to know that autism will affect your life. It is an epidemic. 1 in every 150 children is now diagnosed with ASD – 1 in every 95 boys.
Many families with autism are just trying to survive on a daily basis: It's that hard. Because Joseph has come so far, I have been able to step forward to be a mentor for parents with newly-diagnosed children.I am not the only one. There is a growing movement of parents who have significantly recovered their children, and they are reaching out to other parents.
So when your friend or relative confides in you that they are dealing with an autistic child, please give them hope. Tell them to find these parents and these doctors, to explore what they've done and to see what might work for their child. Tell them to start right away, and tell them that there is much that can be done. There are many reasons to hope.
I'd like to close with these words from Emily Dickinson. They are about hope. They have been on my office wall for 3 ½ years, and they have helped me through some very dark times.
I dedicate them to my son, Joseph, who has been such a trooper through all of this.
Hope is the thing with feathers
That perches in the soul
And sings the tune
Without the words
And never stops – at all.
Conjures up images of making peanut butter sandwiches and putting band aids over injured knees, doesn't it?
Well, that is the kind of mommy I am. But in the last few years, motherhood for me has taken a turn that is very different from what most mommies face.
You see, for the last few years, I have been battling – furiously! -- to save my child's life.
Joseph arrived the way most children arrive. He said his first word, "duck," about the same age most children say their first word. He took his first steps, at the home of a friend, at about the age that most children take their first steps.
But as Joseph neared the age of 2, something started to change for him. He began to lose interest in his toys and his books. His communication diminished to the very basics. When we took him out, particularly to "fun" gatherings with lots of other kids, he would scream and scream at the top of his lungs. The only way to calm him down was to bring him home.
Blue Eyes and I were scared. Joseph was our only kid. We didn't know what was normal and what wasn't, but we felt that something was wrong. We didn't know who to turn to or what to do.
Shortly after Joseph turned 2, a psychiatrist at the prestigious MIND Institute gave us a diagnosis: mild autism. It felt like a death sentence.
Indeed, they say that getting this diagnosis is second, in pain and grief, only to hearing that one's child has a terminal illness. In many ways, it felt like a death. The child we knew was leaving us, slipping behind a veil that we couldn't reach through. Our hopes, desires and expectations were all murdered with that single word: autism.
Many children on the autistic spectrum have what are called co-occurring disorders. Joseph's was that he didn't sleep well. He'd wake up 2, 3, 4 times a night and be awake sometimes for hours at a time. This meant that, pre-diagnosis, I was already a walking zombie. After the diagnosis I would wake when Joseph did but would wake myself up as well – this time with a huge gasp, as I realized yet again that my son had autism, and I didn't know what to do.
We live in a wonderful community. There is a department here called Infant Program which works with children from the ages of 0-3. They rallied around us, and every weekday someone came to play with Joseph, to work with him. Together, slowly, we managed to reel him back from the dangerous precipice he was sliding down. We got a little more eye contact, a little more engagement. Whereas before we'd been feeling only despair, we now started to feel a little bit of hope.
We began to research, to explore, to ask questions. We tried several behavioral therapies and chose one, Relationship Development Intervention, that we love and still use on a daily basis.
As we continued to investigate, we learned something that has made a huge impact in our journey with Joseph.
We discovered that, whereas most doctors know nothing about autism and will tell you it can't be treated physiologically, a small percentage is now stepping forward to say something completely different.
These doctors are saying that, almost across the board, children with ASD have similar physiological symptoms: severe gut disorders, significant levels of heavy metals in their systems, and major food allergies.
If you look at only the food allergies, you see that these kids crave what they are allergic to: the gluten in wheat and other grains, and the casein in dairy products. These foods create an opiate-like reaction in their brains – it zones them out. Isn't that one of the major components of autism?
By the time Joseph was 3, he was completely off all gluten and casein, and he remains so to this day. We found one of these specialist doctors. She was 3.5 hours away. We made the trek to see her often. She charges $350 an hour, and on top of that there are the lab tests, the supplements, the medicines, and all the other treatments she wanted us to try. We took out a second mortgage in order to afford this.
We are not alone in this. All families with autism face the pain of the diagnosis, the grief of their child slipping away, the horror of the co-occurring disorders and, should they choose to go this route, the incredible financial stress of affording these doctors and the leading-edge treatments…which, by the way, insurance virtually does not cover.
Joseph is now 5½. He has made great strides. For one thing, he generally sleeps through the night. It's amazing how well you can sleep when your stomach doesn't hurt.
He goes to a typical preschool, where he is the only child with autism. Visiting teachers come and can't pick him out. In many ways, he is indistinguishable from his peers. He plays tag, hide and seek, and imaginary games with his friends. When I come to pick him up, he runs to me with a happy "I love you, Mommy!" smile that no parent of an autistic child will ever take for granted.
I would like you to know that autism will affect your life. It is an epidemic. 1 in every 150 children is now diagnosed with ASD – 1 in every 95 boys.
Many families with autism are just trying to survive on a daily basis: It's that hard. Because Joseph has come so far, I have been able to step forward to be a mentor for parents with newly-diagnosed children.I am not the only one. There is a growing movement of parents who have significantly recovered their children, and they are reaching out to other parents.
So when your friend or relative confides in you that they are dealing with an autistic child, please give them hope. Tell them to find these parents and these doctors, to explore what they've done and to see what might work for their child. Tell them to start right away, and tell them that there is much that can be done. There are many reasons to hope.
I'd like to close with these words from Emily Dickinson. They are about hope. They have been on my office wall for 3 ½ years, and they have helped me through some very dark times.
I dedicate them to my son, Joseph, who has been such a trooper through all of this.
Hope is the thing with feathers
That perches in the soul
And sings the tune
Without the words
And never stops – at all.
Tuesday, August 4, 2009
Going Public with it
For a long time, it was a secret to all but our closest friends and family. Because Joseph is high-functioning, I could get away with not telling anyone. After all, no kid the age of two (ok, no boy the age of two) has social skills worth noting, and anything else could be written off as quirky toddler behavior.
People called him shy, or young for his age. But they didn't call him autistic. And that was important to me.
Jenny McCarthy has written that she knows she's putting her son, Evan, into the limelight as the poster child for autism. And I wonder, how good is that for Evan?
Even I look at Joseph sometimes and only see autism. Do I really want the rest of the world to do the same? Is it fair to put that label on him?
I don't know what's fair. I only know that, for a while now, I've been feeling a strong inner compulsion to go public with it.
I suppose this blog has been the first step. Friends have read it and reached out, saying they had no idea what we were going through. Joseph's preschool teacher, who takes classes herself, said they'd covered sleep difficulties when studying autism, but only after reading my blog did she really get it (something about me acting like a raging alcoholic in the middle of one dreadful night -- see July 13 post).
But I am a public speaker, and it is time to talk about it. Not just for the rest of us, but even for Joseph. The pitfall, yes, is that more people will label him. But the trade-off is that more people will understand him, and kids like him.
To be truthful, I am not looking forward to this label for myself. Mother of an autistic child. Mother of a child with a disability. Yuck. That's not who I am. But it is a piece of who I am . It has shaped me and molded me, and it's time to honor this process more completely.
So, this coming Monday in Toastmasters, I will tell the story of how Joseph was developing normally until around the age of 2. I will speak of the devastation of an autism diagnosis and the black hole I fell into afterwards - complicated greatly by a continual lack of sleep. I will talk about the treatments that have helped us - the lesser-known dietary and biomedical sides, the more known behavioral approaches. I will describe how far he's come and how the future is still uncertain. I will tell them that they'll be hearing a lot more from me about autism after this.
What I want to do is ask them, beg them, not to look curiously at Joseph -- the autistic kid -- after this. I want to say, please don't start talking to him in a baby voice, or asking me how old he is when you could ask him.
I want to say, please know you can still ask me how my kid is doing -- it's not a taboo subject -- I am still me, and he is still him.
But I won't. Human nature is what it is, and if I am being asked to step up to bat on this, then I will do so and let God handle the rest. As for Joseph, pardon the switch in analogies but his karmic wagon is hitched to mine and I can only go with my intuition.
Six days to ready myself. Gulp.
Sunday, August 2, 2009
The Biomedical Side of Life
The biomedical aspect of autism is said to be "controversial." It hasn't been "proven" to be effective.
HA!
Come on. Almost across the board these kids have gut issues, allergies (to food and pollens), and low-functioning immune systems. If the body and mind are interconnected, wouldn't it make sense that addressing one helps the other, and vice-versa?
I am all for addressing the health issues of kids with autism. But I stray from the massive biomedical wave because of my experience with our DAN (Defeat Autism Now) doctor.
A DAN doctor is an MD who has undergone specific medical training, and who continues to keep up on medical issues, regarding autism. Good DAN doctors are in high demand.
When we found Dr. M, she had a 2-month waiting list which soon increased to 8 months. She charged $350/hour. She was in charge. She knew it all, and we obviously knew nothing. After our first consultation with her we walked out in a daze, arms full of medicines and supplements, about $1800 poorer. Soon Dr. M started charging $15 just to answer a simple question in an email. But we felt lucky when that happened, as she was very hard to reach.
We took out a line of credit on our house to pay for all the appointments and treatments. I spent nearly all my time giving something to Joseph: drops, pills, capsules, drugs, vitamins, shots, creams.
And you know what? It felt g-o-o-d.
First, when you throw all that money at something, you feel like it's really going to work. Then, when you spend all your time, day in and day out, on the biomedical stuff, it feels like you're finally doing something. And with autism, you really want to do something.
A year passed. We were really struggling financially, but we saw some improvements. The time came for Joseph's yearly exam with the good doctor. She again ran many tests, and we waited eagerly for the follow-up phone consultation.
Something happened just before the consultation. Joseph started talking more and engaging more. He was markedly different. We were so excited.
Then we got on the phone with Dr. M. She said that the lab results were dismal. She said that Joseph was terribly toxic. She said he needed to begin chelating immediately.
Blue Eyes and I stood there, listening to her on the speakerphone as she told us how sick our child was. And in the living room, Joseph was laughing and playing, emotion sharing with us and referencing us.
Do you know that saying from the Audubon Society? When the bird and the book disagree, believe the bird.
We chose to believe the bird. And that was the end of our experience with a DAN doctor.
I believe that Dr. M is an earnest person who wants to help children with autism. At the same time, I believe that she sees an opportunity to make piles of money, and she takes advantage. I also believe that she puts way too much stock in lab tests and not enough in what parents have to say about their children.
As for us, we kept searching. After Dr. M, we tried herbs. Then we tried homeopathy. Then we tried chiropractic. But we hadn't yet found the practitioner we were looking for: a highly knowledgeable, truly caring, accessible person who would join us as a partner in recovering Joseph.
We discovered the Generation Rescue website (www.generationrescue.com). We got in touch with an "angel," (a mentor) who lived fairly close. She told us about the naturopath she worked with in recovering her son, and it wasn't long before we went and met Dr. Glen.
On that first visit he gave us his cell phone number. "Call anytime," he said, "I almost always call back within 24 hours." He spent 2 hours with us -- looking, listening, taking notes, sharing his expertise -- and charged us $165 for his time. The supplements were extra. We walked out feeling empowered, heard, and happy to pay $300 for such valuable help. That was 5 months ago now. We couldn't be happier.
Everyone has to find what works for them on this journey. But I say: listen to your gut. If red flags are going up around a practitioner, feel free to walk. There are some really great people out there -- trust your intuition and stay open to them.
I think a big part of life is about getting out of our minds and learning to listen to our hearts, to our intuitive side. When we have a child with autism, this becomes not something we'd like to be able to do but something we must learn to do. Our child's life literally depends on it.
I saw an amazing bumper sticker at a crucial moment in my life. It said something like this:
Don't panic. Breathe. Watch for the signs. You will be guided.
And if that isn't good advice about how to help a child with autism, I don't know what is.
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