I have moved my blog. I've heard so many good things about Wordpress that I finally decided it was time to pack up and move. Please visit me there: http://yogamother.wordpress.com
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.
Friday, July 24, 2009
"My life wasn't meant to be this difficult!"
I read an article about a jet-setting executive in the film industry who got involved with yoga. Yoga worked its magic on him and, as it can, turned his life around 180 degrees. He went from Hollywood riches and fame to living extremely simply, while working to improve the lives of terribly impoverished children in Cambodia.
He was working in Cambodia one day with these kids, who were living in a toxic waste dump that looked like the apocalypse, when he got an "emergency" call from LA. It was an actor having a meltdown because the private jet he was to ride in didn't have the right amenities for him. The actor was quoted as saying, "My life wasn't meant to be this difficult!"
Ironic, right?
And yet.
After we read that article, Blue Eyes and I started quoting this line to each other. We go places where "normal" families are having "normal" times. Parents are off socializing with each other while their kids are playing together somewhere else, and we --
Well, we're usually with Joseph, soothing him if it's too stimulating, or helping him to learn some new RDI objective, or intervening so that he can interact socially with his peers.
And it's easy to look around and say, "My life wasn't meant to be this difficult!"
Or was it?
Yoga's main principles are the niyamas and yamas -- roughly translated as the do's and don'ts of spiritual living. One of the yamas is non-envy. Its corresponding quality, which we are meant to cultivate, is contentment.
I work with non-envy and contentment. I watch my ego wishing things were otherwise, wishing we could be one of those normal (and, therefore one assumes, happy) families.
And yeah, I get sucked in. Sometimes way in. Then I get to drown in self-pity for a while, and I feel isolated and the world seems so dark.
Then, by some grace, I eventually remember: it's not out there, it's in here. It's an inside job.
Yoga calls contentment (santosh in Sanskrit) the supreme virtue. And I remember that the circumstances in my life are not my business -- they are God's business. My business is what I do with those circumstances.
Sister Gyanamata, one of Paramhansa Yogananda's great disciples, is quoted as saying, "Your religion is tested in the cold light of day." Having a child with autism is as cold and light a day as I've ever experienced.
Gyanamata also said, "Change no circumstance. Change only me."
And so, remembering who and what I am -- a spiritual being having a human experience -- and what makes me happiest, I pull my mind out of the delusion of wishing things were otherwise. I open to embrace this moment, with gratitude and acceptance.
This is not some fake "tra-la-la, everything is great" kind of attitude, but the harnessing of all my strength, all my resources, to pull against the strong downward current and reside in that place of peace within.
Our life is not as simple as some people's appear to be. But if I truly believe that there is a Father/Mother God who gives us exactly what we need for our highest good, then how can I possibly believe that this is an accident? Or that it should be other than it is?
Fighting it, resisting it, blocks the flow of energy. As Byron Katie says, "If you fight with reality, you always lose." Exhaling and letting life be as it is opens that channel between me and the Divine, and I feel the contentment of knowing things are exactly as God would have them.
So, God, I thank you for the remembrance that there is so much more going on than I can see. I thank you for this beautiful boy and for the magic of having him in our lives.
Change no circumstance. Change only me.
Wow.
He was working in Cambodia one day with these kids, who were living in a toxic waste dump that looked like the apocalypse, when he got an "emergency" call from LA. It was an actor having a meltdown because the private jet he was to ride in didn't have the right amenities for him. The actor was quoted as saying, "My life wasn't meant to be this difficult!"
Ironic, right?
And yet.
After we read that article, Blue Eyes and I started quoting this line to each other. We go places where "normal" families are having "normal" times. Parents are off socializing with each other while their kids are playing together somewhere else, and we --
Well, we're usually with Joseph, soothing him if it's too stimulating, or helping him to learn some new RDI objective, or intervening so that he can interact socially with his peers.
And it's easy to look around and say, "My life wasn't meant to be this difficult!"
Or was it?
Yoga's main principles are the niyamas and yamas -- roughly translated as the do's and don'ts of spiritual living. One of the yamas is non-envy. Its corresponding quality, which we are meant to cultivate, is contentment.
I work with non-envy and contentment. I watch my ego wishing things were otherwise, wishing we could be one of those normal (and, therefore one assumes, happy) families.
And yeah, I get sucked in. Sometimes way in. Then I get to drown in self-pity for a while, and I feel isolated and the world seems so dark.
Then, by some grace, I eventually remember: it's not out there, it's in here. It's an inside job.
Yoga calls contentment (santosh in Sanskrit) the supreme virtue. And I remember that the circumstances in my life are not my business -- they are God's business. My business is what I do with those circumstances.
Sister Gyanamata, one of Paramhansa Yogananda's great disciples, is quoted as saying, "Your religion is tested in the cold light of day." Having a child with autism is as cold and light a day as I've ever experienced.
Gyanamata also said, "Change no circumstance. Change only me."
And so, remembering who and what I am -- a spiritual being having a human experience -- and what makes me happiest, I pull my mind out of the delusion of wishing things were otherwise. I open to embrace this moment, with gratitude and acceptance.
This is not some fake "tra-la-la, everything is great" kind of attitude, but the harnessing of all my strength, all my resources, to pull against the strong downward current and reside in that place of peace within.
Our life is not as simple as some people's appear to be. But if I truly believe that there is a Father/Mother God who gives us exactly what we need for our highest good, then how can I possibly believe that this is an accident? Or that it should be other than it is?
Fighting it, resisting it, blocks the flow of energy. As Byron Katie says, "If you fight with reality, you always lose." Exhaling and letting life be as it is opens that channel between me and the Divine, and I feel the contentment of knowing things are exactly as God would have them.
So, God, I thank you for the remembrance that there is so much more going on than I can see. I thank you for this beautiful boy and for the magic of having him in our lives.
Change no circumstance. Change only me.
Wow.
Friday, July 17, 2009
Oh, poop!
Who would have thought that poop would loom so large in our lives?
It's such a natural thing. You eat, you poop, you sleep.
Well, one out of three ain't bad. Actually, no -- it is bad. Yet another example of autism being counter intuitive.
Many children with autism have gut issues. Joseph's is constipation. It was there from day one. At an infant check-up I remember asking our pediatrician if I should be concerned that Joseph appeared to struggle a lot, and only managed to poop about every two weeks. She assured me that this was fine -- nothing to worry about.
Note to self: do not trust your doctor.
On the other hand, we owe this doctor some thanks. It was more of her "advice" that got us to our first biomedical doctor. When Joseph was around 2 1/2, I went to see her with my worries about his constipation. I told her how hard I work -- with figs, prune juice, smooth move tea -- just to make sure he goes every few days. Not to worry, she said. Once a week is often enough.
So I relaxed. And Joseph didn't poop.
Within a couple of weeks he was spending most of his time on the floor, knees tucked under his belly. He'd look up every now and then, smiling as usual, and then he'd fold over into what I assume (now) was a tummy cramp.
We started to get really worried. He dragged himself around like his body was too heavy to manage. He was cranky. He slept more horribly than usual. His eyes glazed over.
Our RDI consultant said, Go see a biomedical doctor! Now!
So we called one in the San Francisco area and managed to make it in on someone's cancellation within a relatively short time.
The doctor examined Joseph and said, "This is a very sick boy you have here."
From that day on, we were committed to having this kid poop.
First of all, why didn't he poop? I think it was a combination of things: gut issues (things just didn't work well in there), food allergies messing things up and, lastly, a resistance to the actual feeling of pooping. We'd watch him get this look on his face and then he'd cry out, "No! No!"
He was stopping the poop.
Fiber became a household word. We knew the fiber content of everything he ate. Lots of water. Lots of exercise.
Three months went by. Still things weren't moving well. The doctor said, Let him have enemas!
Oy. For a year we did enemas, pretty much every other day. Joseph hated them. We hated them. They were traumatic all around.
But, darn it, they did the trick.
S-l-o-w-l-y things got better. After being gluten and casein free for two years, things started to do what they were supposed to do. Joseph began to get over his reluctance to that poopy feeling. Other doctors and healthcare practitioners jumped in with other great ideas. A star chart worked well because, after 5 poops and the 5 resulting stars, he got to pick out a new toy.
And now, ladies and gentlemen! He poops every day, often twice a day! Usually at his own initiative!
Our naturopath, Dr. Glen, tells us that, just as a sick person will go on a downward spiral, so too a person who is healing will go on an upward spiral. And we see this with Joseph. Everything is getting better: sleep, poop, vocabulary, social skills (a little!), imagination, and more.
It is great to be going in the right direction.
Poop still looms large in our lives, but we are all starting to lose the trauma around it. It seems like, as far as Joseph goes, poop happens.
Finally.
It's such a natural thing. You eat, you poop, you sleep.
Well, one out of three ain't bad. Actually, no -- it is bad. Yet another example of autism being counter intuitive.
Many children with autism have gut issues. Joseph's is constipation. It was there from day one. At an infant check-up I remember asking our pediatrician if I should be concerned that Joseph appeared to struggle a lot, and only managed to poop about every two weeks. She assured me that this was fine -- nothing to worry about.
Note to self: do not trust your doctor.
On the other hand, we owe this doctor some thanks. It was more of her "advice" that got us to our first biomedical doctor. When Joseph was around 2 1/2, I went to see her with my worries about his constipation. I told her how hard I work -- with figs, prune juice, smooth move tea -- just to make sure he goes every few days. Not to worry, she said. Once a week is often enough.
So I relaxed. And Joseph didn't poop.
Within a couple of weeks he was spending most of his time on the floor, knees tucked under his belly. He'd look up every now and then, smiling as usual, and then he'd fold over into what I assume (now) was a tummy cramp.
We started to get really worried. He dragged himself around like his body was too heavy to manage. He was cranky. He slept more horribly than usual. His eyes glazed over.
Our RDI consultant said, Go see a biomedical doctor! Now!
So we called one in the San Francisco area and managed to make it in on someone's cancellation within a relatively short time.
The doctor examined Joseph and said, "This is a very sick boy you have here."
From that day on, we were committed to having this kid poop.
First of all, why didn't he poop? I think it was a combination of things: gut issues (things just didn't work well in there), food allergies messing things up and, lastly, a resistance to the actual feeling of pooping. We'd watch him get this look on his face and then he'd cry out, "No! No!"
He was stopping the poop.
Fiber became a household word. We knew the fiber content of everything he ate. Lots of water. Lots of exercise.
Three months went by. Still things weren't moving well. The doctor said, Let him have enemas!
Oy. For a year we did enemas, pretty much every other day. Joseph hated them. We hated them. They were traumatic all around.
But, darn it, they did the trick.
S-l-o-w-l-y things got better. After being gluten and casein free for two years, things started to do what they were supposed to do. Joseph began to get over his reluctance to that poopy feeling. Other doctors and healthcare practitioners jumped in with other great ideas. A star chart worked well because, after 5 poops and the 5 resulting stars, he got to pick out a new toy.
And now, ladies and gentlemen! He poops every day, often twice a day! Usually at his own initiative!
Our naturopath, Dr. Glen, tells us that, just as a sick person will go on a downward spiral, so too a person who is healing will go on an upward spiral. And we see this with Joseph. Everything is getting better: sleep, poop, vocabulary, social skills (a little!), imagination, and more.
It is great to be going in the right direction.
Poop still looms large in our lives, but we are all starting to lose the trauma around it. It seems like, as far as Joseph goes, poop happens.
Finally.
Monday, July 13, 2009
Not sleeping: where the spiritual rubber meets the road.
Joseph used to wake up every single night...several times...for several hours at a time.
Night after groggy night.
Year after dreadful year.
It was torture. I nearly went barking mad.
I could easily have become a child abuser. The closest I came was in the middle of one particular night. Joseph had woken and was sitting in his room, playing (loudly) with his toys. I stormed in like a raging alcoholic, grabbed his toys and threw them out of his room, bellowing with all my might. He cried from fear.
Sigh. I am not proud of that moment. But I was almost insane. Truly.
When we went to our first biomedical doctor, I begged -- BEGGED -- her to give us some drugs to make Joseph sleep at night.
She refused. "Address his gut issues!" she said sternly. "How well do you sleep when your stomach hurts?!!"
The thing is, Joseph always woke up happy and stayed happy, no matter what hour it was. It didn't seem that his gut was bothering him.
But we took the doc's advice and addressed his gut issues.
That year he started waking up only once a night instead of two or three or four.
The next year he actually slept through the night now and then. We started to notice a direct correlation between pooping regularly and sleeping regularly.
Now that he poops virtually every day, he will go a month or so sleeping through the night! Then we might have 8 or 9 days of waking up for an hour or so. Then we're back to sleeping through again.
Is it a virus cycling through that is waking him up? Is it knowing that preschool is coming up? Is his gut still bothering him? Are we doomed to this forever?
As for me, my sleep is still traumatized -- thanks for asking. I have given myself permission to continue to use sleeping pills until Joseph makes it through the night for three months straight. After that (if the day ever arrives), I'll start to wean off of them.
The thing is, sleep is a very primitive, basic need. What specialists and teachers often point to as behavior problems in our kids can often be traced simply to the fact that they are not sleeping well. When a kid (or an adult, for that matter) sleeps well and regularly, you will sometimes see an entirely different kid.
So we've come a long way with Joseph, but we're not all the way there yet.
I once went to a satsang with Kali Ma, a spiritual teacher. She spoke about the different things we take refuge in: alcohol, drugs, chocolate, the internet, etc. Her guru advised her to take refuge in only three things: God, Guru, and satsang (other spiritually-minded people). This was a major growing point in her spiritual life.
I have become sane enough with sleep that, when Joseph wakes up in the night now or pops up at 4:30am, I realize that sleep is not a refuge that I am often allowed. I give it all to God: my fatigue, my energy level, my thwarted desires.
And when I'm open to God like this, I feel Him holding me, giving me strength when I feel I simply can't make it.
So. Take refuge in God. I like it. I practice it. It works.
And sometimes I take a power nap in the afternoon. :-)
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