Wednesday, March 31, 2010
My Even Worser Worst Fear
That in order to keep everyone safe, I will have to choose between my two children.
Sunday, March 28, 2010
The Blog Post Heard Round the World (Re: Autism)
We are not an autism family. But we do have one thing in common. We can really create a scene when out in public.
One blog that I read, Raising Complicated Kids, mentioned a story that is becoming very popular in the blogosphere. All because of one very snippy post from a Christian homeschooling mom showing very obvious intolerance towards a small child with autistic symptoms (although no one really knows if the child is autistic or not). I was intrigued, especially knowing what it's like to stand out in a crowd, and read as much as I could about this story. Many many autism blogs (mostly parents of kids with autism) are speaking up about this. As they should!
Anyway, I'm not gonna get into who's right and who's wrong or who should've said what. I think it speaks for itself. And if you're like me, you should be used to the general public not giving a crap about being educated, learning tolerance, or if they've offended you and why. So, this is just not surprising to me.
But it did remind me of a very common problem all of us parents of "different" kids face. Judgmental on-lookers. And boy have I run into those!
Before we knew Taz had a diagnosable reason for all the issues we were having with him, I was part of a Bible study group at my church. Those days have long been over. Not because I have a problem with the Bible, or church, or God. I just don't have the time. Anyway, Dh and I were extremely discouraged and frustrated that the multitude of parenting strategies we had been trying were not working in the least. Things were getting worse and worse and we felt like giant failures. We sucked at this kid thing! I'm sure we've all been there.
So, we had a babysitter for the evening and went to Bible study hoping for some support and relaxation. We brought up our concerns and it turned into a parenting debate. All the adults in the room, some parents, some not, believed that spanking was the only way to discipline, and that clearly was the source of our problems.
We just weren't laying down the law!
We weren't showing him who's boss!
We were letting him walk all over us!
Ha! If only they knew us now (they don't. We ended up leaving that church shortly after). At the time I thought they might be right. Not about the spanking part, about the rest of it. We were doing something wrong!
One of the women present at this group had worked with me at a daycare for about a year previously. We shared a classroom briefly and during that time had worked with one little girl (she was almost 3) who was very, very difficult. I will admit, before becoming a parent I too passed judgment (silently) from time-to-time when witnessing toddler tantrums and such. But, having worked in the special education field, I had experience with non-typical children as well. So I tended to be more gracious and understanding than your typical non-parent bystander.
This little girl we both had the "pleasure" of knowing was extremely moody, to say the least. Looking back, she reminds me a lot of Taz. I would speculate she probably had some form of mood disorder brewing in that little toddler brain of hers. But she aggravated the hell out of the friend I worked with. My friend blamed it solely (solely!) on the parents. I mentioned several times that the child seemed to have a real problem. But no. No, no, no, no. The parents were trying to be her friend. They weren't authoritative enough. It was entirely their fault despite the fact that this child had extreme difficulty during transitions, especially waking up from nap, was sensitive to touch, would have unprovoked crying spells that lasted a long time then be chipper and happy the next moment, and had these issues no matter the teacher or classroom.
This friend, very commonly, did not believe that children could have a disability that couldn't be "fixed" by a bit a firm but loving parenting. She believed that children truly were a product of their parents. How scary for her future children, right? Under my breath I said a prayer that she never have the privilege of raising a less than perfect child. I would really fear for them.
Imagine trying to "beat" bipolar out of a child. Truly terrifying.
This is the type of mentality running rampant through our society. If she knew today that Taz was diagnosed with Bipolar Disorder, I shudder to think what she would say. Probably the same BS I hear other people say. It's over-diagnosed, it's made-up by pharmaceutical companies, parents are lazy, doctors just want to make money, blah blah blah.
And actually, it's much easier to cut these people out of our lives than waste the time and energy trying to change them. I've been there before. Trying, desperately, to find the words to make them understand. And feeling so helpless and frustrated when they don't.
Hence why it's easier sometimes to just say Taz has autism. (Ironically, he can look very much autistic at times. He rocks, he makes strange noises, and he lacks some social awareness).
He can also look very much like a brat.
My favorite story of public humiliation was an afternoon with Taz at a drugstore, just him and I, to pick up toothpaste and tylenol. It was crowded that day. And this was before we started medication. Taz was completely manic. Anytime we're out in public he never holds my hand. It would be useless to insist on it. We would just end up leaving because he would get aggressive. He does, however, generally stay near me. Sure, he may be frog hopping on the floor or crawling under the clothing racks, but he stays within eyesight. Mostly because of his own fear of losing me, which is very helpful, although sad that he feels that way.
So. Like I said, he was very manic, before we knew what manic was or that we should never take him out like that. I was looking at the shelf and Taz was running up and down the aisle. I got what I needed and turned around to look for Taz and he was gone. I called him and walked up the aisle towards the pharmacy. In the corner of the pharmacy, near the blood pressure machine, is a telephone. Taz was on it. I don't know why, maybe he had an urgent call to make. But I grabbed him and headed to the front of the store. I held his hand this time because he was grabbing things off the shelves and just being generally obnoxious. And he started scratching and biting me, hence why I don't hold his hand very often. Even now we teach him constantly and urgently about traffic safety because of this reason.
We got to the front of the store and Taz was in fight or flight mode. He wasn't screaming or crying, that's how I know he was manic. He was laughing. There was a line at the check-out so I put my items down on the side of the counter, where the trashy magazines are, so I could hold both of Taz's arms and he couldn't scratch me. He started screaming "let go! Let go!" So I made him promise not to try to hurt me and I let him go.
At this point it was very crowded with people going in and out of the store near where we were standing. Taz started doing his frog-hopping all around the front of the store but staying close-by. Then he started spitting. But it wasn't the hack-a-lougie type of spit that you can really lunge at someone. It was more like baby raspberry spitting. It doesn't really go anywhere except drool down his chin. Not a big deal. To me.
Sidenote: The term "picking your battles" never quite meant the same before Taz as it does after.
Well, Taz started spitting at everyone who walked into the store. Again, it wasn't actually hitting them. Most people didn't even notice. But one lady did. Now you might imagine my mood at this point during the trip. I was frustrated, exhausted, and embarrassed. I'm pretty sure it had been "one of those days" because I remember my feelings so distinctly after all this time. I was at the register paying for my things while simultaneously trying to keep one eye on Taz. As I was getting ready to leave I saw out of my peripheral vision a woman staring, mouth wide open, at Taz. Very obviously shocked and abhorred at his behavior. I suppose, not knowing me or Taz, I would have been to. I don't know if I would have stared with my mouth hanging open, but I might have raised my eyebrows and moved on.
Well. I looked at her- no, I glared at her with probably the most fearsome look on my face I have ever had and I thought in my head, "say something. I dare you!" And I stood there and waited. I was ready. I wanted her to say something. I was like a bomb ready to go off at the slightest threat. I'm pretty sure had she said something, they would've had to call security on me. So it was probably good that she kept her mouth shut (figuratively speaking. It was still open when we left the store).
So I picked up Taz, feeling suddenly very protective of him, and left. I don't know what she was thinking but I'm pretty sure I could guess. It was probably very similar to what that snarky mom wrote about the possibly autistic child on her blog. This woman probably told the story of the rotten boy spitting at people at the drugstore while his mom did nothing to stop him, to various friends and family that day. And then stated that she could have straightened that boy out in a day or two.
Speaking of, I would love to see someone actually do what they say they could for my son. I know for a fact that my son could tear the best self-proclaimed child straighten-out-ener apart. And I would laugh the whole time.
So...what about you? What are your stories?
One blog that I read, Raising Complicated Kids, mentioned a story that is becoming very popular in the blogosphere. All because of one very snippy post from a Christian homeschooling mom showing very obvious intolerance towards a small child with autistic symptoms (although no one really knows if the child is autistic or not). I was intrigued, especially knowing what it's like to stand out in a crowd, and read as much as I could about this story. Many many autism blogs (mostly parents of kids with autism) are speaking up about this. As they should!
Anyway, I'm not gonna get into who's right and who's wrong or who should've said what. I think it speaks for itself. And if you're like me, you should be used to the general public not giving a crap about being educated, learning tolerance, or if they've offended you and why. So, this is just not surprising to me.
But it did remind me of a very common problem all of us parents of "different" kids face. Judgmental on-lookers. And boy have I run into those!
Before we knew Taz had a diagnosable reason for all the issues we were having with him, I was part of a Bible study group at my church. Those days have long been over. Not because I have a problem with the Bible, or church, or God. I just don't have the time. Anyway, Dh and I were extremely discouraged and frustrated that the multitude of parenting strategies we had been trying were not working in the least. Things were getting worse and worse and we felt like giant failures. We sucked at this kid thing! I'm sure we've all been there.
So, we had a babysitter for the evening and went to Bible study hoping for some support and relaxation. We brought up our concerns and it turned into a parenting debate. All the adults in the room, some parents, some not, believed that spanking was the only way to discipline, and that clearly was the source of our problems.
We just weren't laying down the law!
We weren't showing him who's boss!
We were letting him walk all over us!
Ha! If only they knew us now (they don't. We ended up leaving that church shortly after). At the time I thought they might be right. Not about the spanking part, about the rest of it. We were doing something wrong!
One of the women present at this group had worked with me at a daycare for about a year previously. We shared a classroom briefly and during that time had worked with one little girl (she was almost 3) who was very, very difficult. I will admit, before becoming a parent I too passed judgment (silently) from time-to-time when witnessing toddler tantrums and such. But, having worked in the special education field, I had experience with non-typical children as well. So I tended to be more gracious and understanding than your typical non-parent bystander.
This little girl we both had the "pleasure" of knowing was extremely moody, to say the least. Looking back, she reminds me a lot of Taz. I would speculate she probably had some form of mood disorder brewing in that little toddler brain of hers. But she aggravated the hell out of the friend I worked with. My friend blamed it solely (solely!) on the parents. I mentioned several times that the child seemed to have a real problem. But no. No, no, no, no. The parents were trying to be her friend. They weren't authoritative enough. It was entirely their fault despite the fact that this child had extreme difficulty during transitions, especially waking up from nap, was sensitive to touch, would have unprovoked crying spells that lasted a long time then be chipper and happy the next moment, and had these issues no matter the teacher or classroom.
This friend, very commonly, did not believe that children could have a disability that couldn't be "fixed" by a bit a firm but loving parenting. She believed that children truly were a product of their parents. How scary for her future children, right? Under my breath I said a prayer that she never have the privilege of raising a less than perfect child. I would really fear for them.
Imagine trying to "beat" bipolar out of a child. Truly terrifying.
This is the type of mentality running rampant through our society. If she knew today that Taz was diagnosed with Bipolar Disorder, I shudder to think what she would say. Probably the same BS I hear other people say. It's over-diagnosed, it's made-up by pharmaceutical companies, parents are lazy, doctors just want to make money, blah blah blah.
And actually, it's much easier to cut these people out of our lives than waste the time and energy trying to change them. I've been there before. Trying, desperately, to find the words to make them understand. And feeling so helpless and frustrated when they don't.
Hence why it's easier sometimes to just say Taz has autism. (Ironically, he can look very much autistic at times. He rocks, he makes strange noises, and he lacks some social awareness).
He can also look very much like a brat.
My favorite story of public humiliation was an afternoon with Taz at a drugstore, just him and I, to pick up toothpaste and tylenol. It was crowded that day. And this was before we started medication. Taz was completely manic. Anytime we're out in public he never holds my hand. It would be useless to insist on it. We would just end up leaving because he would get aggressive. He does, however, generally stay near me. Sure, he may be frog hopping on the floor or crawling under the clothing racks, but he stays within eyesight. Mostly because of his own fear of losing me, which is very helpful, although sad that he feels that way.
So. Like I said, he was very manic, before we knew what manic was or that we should never take him out like that. I was looking at the shelf and Taz was running up and down the aisle. I got what I needed and turned around to look for Taz and he was gone. I called him and walked up the aisle towards the pharmacy. In the corner of the pharmacy, near the blood pressure machine, is a telephone. Taz was on it. I don't know why, maybe he had an urgent call to make. But I grabbed him and headed to the front of the store. I held his hand this time because he was grabbing things off the shelves and just being generally obnoxious. And he started scratching and biting me, hence why I don't hold his hand very often. Even now we teach him constantly and urgently about traffic safety because of this reason.
We got to the front of the store and Taz was in fight or flight mode. He wasn't screaming or crying, that's how I know he was manic. He was laughing. There was a line at the check-out so I put my items down on the side of the counter, where the trashy magazines are, so I could hold both of Taz's arms and he couldn't scratch me. He started screaming "let go! Let go!" So I made him promise not to try to hurt me and I let him go.
At this point it was very crowded with people going in and out of the store near where we were standing. Taz started doing his frog-hopping all around the front of the store but staying close-by. Then he started spitting. But it wasn't the hack-a-lougie type of spit that you can really lunge at someone. It was more like baby raspberry spitting. It doesn't really go anywhere except drool down his chin. Not a big deal. To me.
Sidenote: The term "picking your battles" never quite meant the same before Taz as it does after.
Well, Taz started spitting at everyone who walked into the store. Again, it wasn't actually hitting them. Most people didn't even notice. But one lady did. Now you might imagine my mood at this point during the trip. I was frustrated, exhausted, and embarrassed. I'm pretty sure it had been "one of those days" because I remember my feelings so distinctly after all this time. I was at the register paying for my things while simultaneously trying to keep one eye on Taz. As I was getting ready to leave I saw out of my peripheral vision a woman staring, mouth wide open, at Taz. Very obviously shocked and abhorred at his behavior. I suppose, not knowing me or Taz, I would have been to. I don't know if I would have stared with my mouth hanging open, but I might have raised my eyebrows and moved on.
Well. I looked at her- no, I glared at her with probably the most fearsome look on my face I have ever had and I thought in my head, "say something. I dare you!" And I stood there and waited. I was ready. I wanted her to say something. I was like a bomb ready to go off at the slightest threat. I'm pretty sure had she said something, they would've had to call security on me. So it was probably good that she kept her mouth shut (figuratively speaking. It was still open when we left the store).
So I picked up Taz, feeling suddenly very protective of him, and left. I don't know what she was thinking but I'm pretty sure I could guess. It was probably very similar to what that snarky mom wrote about the possibly autistic child on her blog. This woman probably told the story of the rotten boy spitting at people at the drugstore while his mom did nothing to stop him, to various friends and family that day. And then stated that she could have straightened that boy out in a day or two.
Speaking of, I would love to see someone actually do what they say they could for my son. I know for a fact that my son could tear the best self-proclaimed child straighten-out-ener apart. And I would laugh the whole time.
So...what about you? What are your stories?
Tuesday, March 23, 2010
It's Not All Bad
Sometimes it's hard to think of the positive when we're in the middle of a tornado full of chaos. Believe me, I know.
But, I think we can all agree there are small moments during the day where we see some sun peeking through the storm clouds. A happy cuddle. A kind gesture towards a sibling. Saying please and thank you without being told. Apologizing when he's done something wrong.
And these moments feel so much bigger and better than they would a typical child. These are moments we hang on to when things are hard. Moments we treasure and try to remember when it's been a particularly bad day. At least I do.
When I feel discouraged, depressed, frustrated, hopeless and helpless, I try to remember the fun and tender moments we do have (and there are a lot of them) on a daily basis.
Some of the best parts of Taz are:
- he has a great sense of humor and makes everyone around him laugh.
- he's charming.
- he is affectionate.
- he is complimentary. (He always tells me I look beautiful if I put make-up on or wear a skirt)
- he's cute.
- he is creative.
- he is lovable.
Everybody says that raising kids is hard but worth it. Sometimes I wonder if that's true. Will it be worth it in the end? Is it true that what doesn't kill you makes you stronger?
What do you think?
It's Not Fair! - Kids Should be Kids
I am a firm believer that children should be children. They should be allowed to take their time growing up and enjoy the younger years of carefree, joyful living. Playing in the mud, making up silly songs, climbing trees, exploring nature, catching bugs in jars, popsicle stains on t-shirts and faces, hunting for hermit crabs at the beach, and waking up every morning to a new day full of exciting adventures. That is what I remember from my childhood. If the sun was shining, I was outside morning till night. If it was raining, we watched movies, made forts in our bedroom, and played board games. That's not to say we didn't have worries and fears, sadness and anger. But they were small and insignificant compared to life in the grown up world. We were kids. Kids should be sheltered from grown up problems.
With mentally ill children, it's a whole other world. A childhood of doctors appointments, being poked with needles, taking medication that sometimes makes your belly hurt, assorted therapies, having unpleasant and sometimes scary emotions that you don't understand, getting in trouble much more than other kids, feeling bad about yourself, feeling out of control, night terrors, being frustrated almost constantly, and knowing there is something different about you but not understanding why.
And that's my question.
Why?
It's not fair!
Childhood should contain memories of care-free inhibition, adventures, and treasured friendships. When Taz looks back on his childhood, I don't want him to think of blood draws, psychiatrist offices, and rages. That's why I feel compelled to over-compensate by creating as many fun memories as I can. Going to museums, swimming, vacations, Disney World, car shows, going to the movies, gymnastics class, etc. I plan on spending all summer at the beach, teaching him how to swim, building sand castles, and hunting for crabs. Now that he's older, and I don't have an infant anymore, we can take long nature walks and collect bugs and leaves to identify. We can spend hours at the park climbing the jungle gym and making friends.
But most of these ideas that occur in my head work out so much more pleasantly than the real life event. In my head, a beach trip is filled with laughter and learning. Nature walks are peaceful and educational. Playing at the park is adventurous and fun.
But in real life, at the beach, I will try to build a sand castle, Taz will freak out about sand being in his shoes. I will jump in the waves, Taz will cling to me in fear. I will hunt for hermit crabs, Taz will complain the water is too cold. Getting two kids changed into dry clothes for the ride home will make me irritable and tired, especially as Taz fights me because he's hot and tired and irritated too. I'll lose my patience and yell. Chica will get scared and start to cry. We will all be frustrated and hot by the time we get to the car. And I will silently swear never to do this again.
We may go for a nature walk and I'll put Chica in the stroller. Taz is highly energetic so I will assume he can walk the whole way. Half way through he will want to go in the stroller, leaving Chica, just learning to walk, to slow down our pace. The nature walk will last much longer than intended and Taz will complain that he's hungry and thirsty. After he drinks the only juice box I brought for him, he will scream and cry that he's so thirsty and wants something to drink right NOW. I will pick up Chica and carry her while pushing the stroller where Taz is crying, all the way back home. I will silently swear never to do this again.
We may go to the park down the street and I will be ready and eager to make new friendships. I encourage the kids to run and play and be free. But Taz doesn't like the way one boy looked at him and so he's out to get him. Every time he gets a chance he will spit at this boy and call him "stupid". He gets so obsessed with this one child he has decided, for whatever reason I can not discern, that he is his worst enemy. I tell him several times to leave the boy alone but he does not stop. He can not stop. It's a compulsion driving him, like an engine, to hate this child. He will tell me over and over "I hate that boy". I will start getting looks from the other boy's mother. I try to get Taz interested in something else. He may play for a few minutes but is always back to the boy. Then he tries to kick him. And so we leave, while all the moms and dads give us dirty looks. I will silently swear never to do this again.
After this, I will learn that going far from home is never worth it.
It's not fair. Not for Taz. Not for me. Not for Chica.
But it's not all bad.
I may swear never to go out with the kids again, but I go anyway. Because I'm bound and determined to create those childhood memories for Taz and Chica. Even if it ends in disaster. Even if it turns into a nightmare. I will keep trying.
But it's not fair that it has to be so hard.
Next post will be about the good parts of being Taz's mom. It is hard, we all know, but sometimes you have to appreciate the good instead of dwelling on the bad.
What about you? Do you have "delusions of grandeur" and fantasies in your head about what raising children should be like? Are there times you just want to have a normal family outing and it turns into a nightmare? Have you learned to make the most of the fun times you do have?
With mentally ill children, it's a whole other world. A childhood of doctors appointments, being poked with needles, taking medication that sometimes makes your belly hurt, assorted therapies, having unpleasant and sometimes scary emotions that you don't understand, getting in trouble much more than other kids, feeling bad about yourself, feeling out of control, night terrors, being frustrated almost constantly, and knowing there is something different about you but not understanding why.
And that's my question.
Why?
It's not fair!
Childhood should contain memories of care-free inhibition, adventures, and treasured friendships. When Taz looks back on his childhood, I don't want him to think of blood draws, psychiatrist offices, and rages. That's why I feel compelled to over-compensate by creating as many fun memories as I can. Going to museums, swimming, vacations, Disney World, car shows, going to the movies, gymnastics class, etc. I plan on spending all summer at the beach, teaching him how to swim, building sand castles, and hunting for crabs. Now that he's older, and I don't have an infant anymore, we can take long nature walks and collect bugs and leaves to identify. We can spend hours at the park climbing the jungle gym and making friends.
But most of these ideas that occur in my head work out so much more pleasantly than the real life event. In my head, a beach trip is filled with laughter and learning. Nature walks are peaceful and educational. Playing at the park is adventurous and fun.
But in real life, at the beach, I will try to build a sand castle, Taz will freak out about sand being in his shoes. I will jump in the waves, Taz will cling to me in fear. I will hunt for hermit crabs, Taz will complain the water is too cold. Getting two kids changed into dry clothes for the ride home will make me irritable and tired, especially as Taz fights me because he's hot and tired and irritated too. I'll lose my patience and yell. Chica will get scared and start to cry. We will all be frustrated and hot by the time we get to the car. And I will silently swear never to do this again.
We may go for a nature walk and I'll put Chica in the stroller. Taz is highly energetic so I will assume he can walk the whole way. Half way through he will want to go in the stroller, leaving Chica, just learning to walk, to slow down our pace. The nature walk will last much longer than intended and Taz will complain that he's hungry and thirsty. After he drinks the only juice box I brought for him, he will scream and cry that he's so thirsty and wants something to drink right NOW. I will pick up Chica and carry her while pushing the stroller where Taz is crying, all the way back home. I will silently swear never to do this again.
We may go to the park down the street and I will be ready and eager to make new friendships. I encourage the kids to run and play and be free. But Taz doesn't like the way one boy looked at him and so he's out to get him. Every time he gets a chance he will spit at this boy and call him "stupid". He gets so obsessed with this one child he has decided, for whatever reason I can not discern, that he is his worst enemy. I tell him several times to leave the boy alone but he does not stop. He can not stop. It's a compulsion driving him, like an engine, to hate this child. He will tell me over and over "I hate that boy". I will start getting looks from the other boy's mother. I try to get Taz interested in something else. He may play for a few minutes but is always back to the boy. Then he tries to kick him. And so we leave, while all the moms and dads give us dirty looks. I will silently swear never to do this again.
After this, I will learn that going far from home is never worth it.
It's not fair. Not for Taz. Not for me. Not for Chica.
But it's not all bad.
I may swear never to go out with the kids again, but I go anyway. Because I'm bound and determined to create those childhood memories for Taz and Chica. Even if it ends in disaster. Even if it turns into a nightmare. I will keep trying.
But it's not fair that it has to be so hard.
Next post will be about the good parts of being Taz's mom. It is hard, we all know, but sometimes you have to appreciate the good instead of dwelling on the bad.
What about you? Do you have "delusions of grandeur" and fantasies in your head about what raising children should be like? Are there times you just want to have a normal family outing and it turns into a nightmare? Have you learned to make the most of the fun times you do have?
Monday, March 22, 2010
Won't You Be My Friend?
We used to have lots of friends. Couple friends, singleton friends, friends that like to play with rocks. Some part of the blame for our lack of friends falls on us. We've isolated ourselves a little bit. The kind of stress we've been dealing with doesn't lend itself to social occasions very well. I think when you have a child with special needs, no matter what kind they are, it's very natural to want to isolate. You may think no one will accept you or be able to understand. Or you may not want to deal with judgment and questions. Whatever the reason, it's sad and makes life harder. I miss social experiences. I miss have other significant relationships in my life.
One of my reasons for lack of friends is because there just simply aren't a lot of people out there that can handle my son's intensity. Which is the truth. He scares other children. One of my friends, who has stuck around, came to Chica's birthday party last weekend with her 9 month son and Taz tried to kick him multiple times. You have to be a pretty understanding person to put up with that. (I'll explain why my son has problems with other children in another post)
Another thing a friend would have to put up with is being flexible with Taz's needs. Everything, or almost everything, revolves around Taz. If we go out to a park, and Taz is hungry and ready to go, we must leave. If we're inside, and Taz has lots of energy and wants to go outside, out we go. This makes it difficult to maintain friendships. Who wants to have to obey a pint-sized dictator? Not me, and I'm his mother!
Also a part in all of this is what I call the embarrassment factor. It's natural to judge a person's parenting ability based on how their kids behave. When they don't behave well, you would question the parenting, right? Plus, my son doesn't respond to typical consequences (also to be explained in another post) so it would seem to many that I am enabling his behavior or "letting him get away with it". Which I hear all the time. Now, make no mistake, when Taz is having a tantrum or rage, he in no way gets whatever "thing" he is raging about. BUT, we have to handle discipline very carefully. This is very hard to explain to other parents who've only ever seen kids that act like mine on shows like Supernanny. How do you explain a 200 page book's worth of information on bipolar disorder to someone in 3 minutes?
So, if there's anyone out there who'd like to be my friend, even if my little Tazmanian devil tries to hit your kid, or screams in his face, or demands to go outside when it's raining, you are welcome to apply =)
Saturday, March 20, 2010
My Worst Fears
If my mom knew I was writing this she would say not to talk about this or even think about these things. But how can I not? If my worst fears came true would it be easier had I been prepared? I don't know. What do you think?
1. Suicide: One in five people with bipolar disorder will commit suicide. An even higher number for those who try but don't succeed. Bipolar disorder has a higher death rate than some forms of cancer.
2. Hospitalization: When it happens, if it happens, I will be heartbroken. I understand it's temporary. I understand it saves kids lives. I understand a child can get healthy faster. But it will still kill me a little bit inside to do it.
3. Schizophrenia: Taz's biological family is riddled with schizophrenia. It's not a death sentence but if you saw the recent episode of 20/20 with Jani and Becca, you know it's scary, and so so sad. Even Jani's dad would tell you it's a devastating disease. Is bipolar the lesser of two evils? Yup. At least in my mind.
4. Baby Chica: I have two fears for her. One, she will be traumatized from living with an older sibling with bipolar disorder. That she feels like she will always be secondary to his illness. And two, she will start to show signs of bipolar or schizophrenia. Because, see, Taz and Chica are half siblings, they have the same birth mother. Chica has a 50% chance of inheriting a mental illness. We are hoping she wins the genetic lottery and stays healthy. So far she is the most typical 1 year old I know. But, this is terrible to say, DH and I will always be watching and holding our breaths.
5. Substance Abuse: When Taz turns 18, I have no control over him or what he does. He can choose to take medication or not. He can choose to go to therapy or not. He can choose to go to the hospital or get help if he's feeling unsafe or not. He can choose to self-medicate with substances. I live in a city with a very high population of drug abusers and dealers. Many substance abusers have a mental illness, be it depression, anxiety disorder, bipolar, OCD, or schizophrenia. I see them all the time walking on the street talking to themselves. That's what I'm afraid either of my kids will become.
So I've been open and honest with you. What are your worst fears?
1. Suicide: One in five people with bipolar disorder will commit suicide. An even higher number for those who try but don't succeed. Bipolar disorder has a higher death rate than some forms of cancer.
2. Hospitalization: When it happens, if it happens, I will be heartbroken. I understand it's temporary. I understand it saves kids lives. I understand a child can get healthy faster. But it will still kill me a little bit inside to do it.
3. Schizophrenia: Taz's biological family is riddled with schizophrenia. It's not a death sentence but if you saw the recent episode of 20/20 with Jani and Becca, you know it's scary, and so so sad. Even Jani's dad would tell you it's a devastating disease. Is bipolar the lesser of two evils? Yup. At least in my mind.
4. Baby Chica: I have two fears for her. One, she will be traumatized from living with an older sibling with bipolar disorder. That she feels like she will always be secondary to his illness. And two, she will start to show signs of bipolar or schizophrenia. Because, see, Taz and Chica are half siblings, they have the same birth mother. Chica has a 50% chance of inheriting a mental illness. We are hoping she wins the genetic lottery and stays healthy. So far she is the most typical 1 year old I know. But, this is terrible to say, DH and I will always be watching and holding our breaths.
5. Substance Abuse: When Taz turns 18, I have no control over him or what he does. He can choose to take medication or not. He can choose to go to therapy or not. He can choose to go to the hospital or get help if he's feeling unsafe or not. He can choose to self-medicate with substances. I live in a city with a very high population of drug abusers and dealers. Many substance abusers have a mental illness, be it depression, anxiety disorder, bipolar, OCD, or schizophrenia. I see them all the time walking on the street talking to themselves. That's what I'm afraid either of my kids will become.
So I've been open and honest with you. What are your worst fears?
Friday, March 19, 2010
Medication Myths
1. People are zombies on medication.
Taz is nothing like a zombie. He is active and engaging. He is charming and funny. He likes dancing and playing outside, worms and cars. People tend to forget that parents (except for the rarity) truly want the best for their children. Parents of special needs kids are no different. Of course we don't want our children walking around in a drugged stupor. If that happens, we will do all we can to change it. Sometimes meds have negative side effects. If that's the case, you adjust.
2. Parents are medicating their children because they don't want to deal with behavior.
First of all, I would hope a psychiatrist could see the difference between that kind of parent and a true mental illness. Granted, there are some quacks out there. But majority speaking, that's just stupid. Bipolar disorder goes beyond behavior problems. This ain't no Supernanny episode we're talking about here. Bipolar disorder is a disabling illness that a child simply can NOT control.
3. You can fix this by being better parents.
I'm only going to say this once. BAD PARENTING DOES NOT CAUSE MENTAL ILLNESS!!! Got it?
4. Parents are medicating their kids because they want to create perfect kids.
It's not about perfection. And it's not about being on the honor roll. It's not about being the best student or being able to sit still or submitting to authority or blind obedience. We want healthy kids. Not mini-robots. Healthy and functioning.
5. Parents want to medicate their kids because they don't want to take responsibility for their shortcomings.
Maybe some do. But I don't know any, and I know a lot of parents. You know, this is something I hear a lot on message boards and comments on other blogs. The general public seems to think that pharmaceutical companies are running the world. They are the puppeteers controlling the doctors and the doctors are just prescription-happy idiots. Maybe I'm naive. Or maybe I just don't have enough experience, but I have yet to talk to a doctor that gives medication out like candy. But that's what people think. I'm wondering if the general public just makes this stuff up because they are uncomfortable with the idea that children can have mental illness. Or that because they don't understand it, it must not be true. Or maybe deep down inside they are scared that if other kids can have a mental illness, their children can too. What do you think?
Any other medication myths you've heard?
Taz is nothing like a zombie. He is active and engaging. He is charming and funny. He likes dancing and playing outside, worms and cars. People tend to forget that parents (except for the rarity) truly want the best for their children. Parents of special needs kids are no different. Of course we don't want our children walking around in a drugged stupor. If that happens, we will do all we can to change it. Sometimes meds have negative side effects. If that's the case, you adjust.
2. Parents are medicating their children because they don't want to deal with behavior.
First of all, I would hope a psychiatrist could see the difference between that kind of parent and a true mental illness. Granted, there are some quacks out there. But majority speaking, that's just stupid. Bipolar disorder goes beyond behavior problems. This ain't no Supernanny episode we're talking about here. Bipolar disorder is a disabling illness that a child simply can NOT control.
3. You can fix this by being better parents.
I'm only going to say this once. BAD PARENTING DOES NOT CAUSE MENTAL ILLNESS!!! Got it?
4. Parents are medicating their kids because they want to create perfect kids.
It's not about perfection. And it's not about being on the honor roll. It's not about being the best student or being able to sit still or submitting to authority or blind obedience. We want healthy kids. Not mini-robots. Healthy and functioning.
5. Parents want to medicate their kids because they don't want to take responsibility for their shortcomings.
Maybe some do. But I don't know any, and I know a lot of parents. You know, this is something I hear a lot on message boards and comments on other blogs. The general public seems to think that pharmaceutical companies are running the world. They are the puppeteers controlling the doctors and the doctors are just prescription-happy idiots. Maybe I'm naive. Or maybe I just don't have enough experience, but I have yet to talk to a doctor that gives medication out like candy. But that's what people think. I'm wondering if the general public just makes this stuff up because they are uncomfortable with the idea that children can have mental illness. Or that because they don't understand it, it must not be true. Or maybe deep down inside they are scared that if other kids can have a mental illness, their children can too. What do you think?
Any other medication myths you've heard?
Medication: the Guessing Game
I know it would seem crazy to medicate a child so young, but once I learned about something called "the kindling effect", I really felt it was the right choice. Not only that, but our family was in crisis. Taz was miserable most of the time. I was stressed to the max. DH was having panic attacks in the middle of the night from all the stress, which is so absolutely not normal for him. I joke around that living with a child with bipolar causes everyone else in the house to have bipolar. It's like being on some kind of crazy ride you can't get off of. We were desperate to try medication. Of course we didn't really want our child to need medication. But it was clear he did. And the more we read about bipolar disorder, the more we knew that he needed it.
So. The kindling effect. I'm quoting from an online source because I can't really explain it any better.
"...initial periods of cycling may begin with an environmental stressor, but if the cycles continue or occur unchecked, the brain becomes kindled or sensitized - pathways inside the central nervous system are reinforced so to speak - and future episodes of depression, hypomania, or mania will occur by themselves (independently of an outside stimulus), with greater and greater frequency. Thus, to put it simply, brain cells that have been involved in an episode once are more likely to do so again, and more cells will become sensitized over time. This theory has been borne out by some research observations. For example, "there is evidence that the more mood episodes a person has, the harder it is to treat each subsequent episode..." thus taking the kindling analogy one step further: that a fire which has spread is harder to put out."
Scary, right? So, the longer someone goes without treatment, the harder that person may become in responding to future treatment. The most common medications used to treat bipolar disorder are anti-psychotics and mood stabilizers, which can be anti-seizure medications as well. Scientists aren't exactly sure why anti-seizure meds work, but there is a theory that bipolar episodes are a bit like having a seizure in the frontal cortex (the one effecting judgment) of the brain. Interesting. I wonder what will come of this theory.
Reading about the kindling effect was enough to scare me into seriously considering medication for Taz. Dr.S agreed. So the guessing game begins.
We started with a pretty common anti-psychotic called Risperdal. With medication you always start with a low dose then gradually increase it either until it works, or until it's reaching beyond a safe level for that person. If it still doesn't work, then it's not the right medication. The reason I call medication trials a guessing game is because every person responds differently to every medication. And no one really knows why or how. So the psychiatrist literally has to guess about which one to try and when. Of course, there are basic guidelines to go off of, but mostly it takes lots of trial and error.
Immediately we noticed that upon taking the risperdal, Taz's sleeping got worse. Dr.S wanted to keep it during the day because risperdal has been known to work well in young children to treat rages and aggression, two of our main issues. So he also prescribed a very very small dose of Seroquel, also an anti-psychotic, to be taken right before bedtime. Hallelujah! This was our savior for sleep. Right when we started the seroquel, Taz started going to bed on time and sleeping through the night. No more night terrors! I was thrilled. Everyone in the house was finally sleeping!
We eventually upped the dose of risperdal to 3 times a day to see if we could tame the rages and aggression. We are still on the risperdal but it wasn't enough. It works great to treat the mania. I can always tell when we are late or missed a dose because Taz gets that look in his eye I described before. DH and I look at each other practically reading minds. Did he get his medicine?
But risperdal doesn't do enough for Taz to stop the rages, aggression, irritability, and depression. I was hesitant to start a mood stabilizer, the most popular and well-known being lithium, because the side effect can be more serious and you need to be having regular blood draws, a traumatic experience for all of us. But I discussed it with Dr.S and he thought we should try Depakote. Now all these med changes happened within the course of several months, not weeks or days. I don't want you to get that idea.
Depakote is a seizure med that has been around for a while and has also been used for young children. We do have to get blood work every few months, but we're hoping the benefits are worth it. It's still pretty new for us but so far, so good. Taz has had a wonderful week. I'm hesitant to say it's from the med combo right now because, even though one may have a mental illness, they can still have some wonderful and stable times. We are hopeful but also guarded watching Taz do so well.
When I went into the medication world, I said to myself, one medication at a time, maybe two at the most. I would not be one of those parents who keep adding medication upon medication until I create the "perfect child". Of course no one on this journey is expecting perfection. We are expecting stability. It's completely different in ways I can't really describe, but parents of bipolar kids out there know what I'm talking about. Now Taz is on three medications. Do I wish it was two? Yes. Do I wish it was none? Yes. Do I wish I don't even have to be writing this? Yes!
The plan started that if the depakote works, we would taper down the risperdal so that he would only be on two medications. But if the depakote works, like it seems to be now, I will be so scared to change anything for fear of destroying our stability. I guess we'll cross that bridge when we get there.
Next post I'm going to list some common myths about medication. All my experienced bipolar battlers please chime in!
So. The kindling effect. I'm quoting from an online source because I can't really explain it any better.
"...initial periods of cycling may begin with an environmental stressor, but if the cycles continue or occur unchecked, the brain becomes kindled or sensitized - pathways inside the central nervous system are reinforced so to speak - and future episodes of depression, hypomania, or mania will occur by themselves (independently of an outside stimulus), with greater and greater frequency. Thus, to put it simply, brain cells that have been involved in an episode once are more likely to do so again, and more cells will become sensitized over time. This theory has been borne out by some research observations. For example, "there is evidence that the more mood episodes a person has, the harder it is to treat each subsequent episode..." thus taking the kindling analogy one step further: that a fire which has spread is harder to put out."
Scary, right? So, the longer someone goes without treatment, the harder that person may become in responding to future treatment. The most common medications used to treat bipolar disorder are anti-psychotics and mood stabilizers, which can be anti-seizure medications as well. Scientists aren't exactly sure why anti-seizure meds work, but there is a theory that bipolar episodes are a bit like having a seizure in the frontal cortex (the one effecting judgment) of the brain. Interesting. I wonder what will come of this theory.
Reading about the kindling effect was enough to scare me into seriously considering medication for Taz. Dr.S agreed. So the guessing game begins.
We started with a pretty common anti-psychotic called Risperdal. With medication you always start with a low dose then gradually increase it either until it works, or until it's reaching beyond a safe level for that person. If it still doesn't work, then it's not the right medication. The reason I call medication trials a guessing game is because every person responds differently to every medication. And no one really knows why or how. So the psychiatrist literally has to guess about which one to try and when. Of course, there are basic guidelines to go off of, but mostly it takes lots of trial and error.
Immediately we noticed that upon taking the risperdal, Taz's sleeping got worse. Dr.S wanted to keep it during the day because risperdal has been known to work well in young children to treat rages and aggression, two of our main issues. So he also prescribed a very very small dose of Seroquel, also an anti-psychotic, to be taken right before bedtime. Hallelujah! This was our savior for sleep. Right when we started the seroquel, Taz started going to bed on time and sleeping through the night. No more night terrors! I was thrilled. Everyone in the house was finally sleeping!
We eventually upped the dose of risperdal to 3 times a day to see if we could tame the rages and aggression. We are still on the risperdal but it wasn't enough. It works great to treat the mania. I can always tell when we are late or missed a dose because Taz gets that look in his eye I described before. DH and I look at each other practically reading minds. Did he get his medicine?
But risperdal doesn't do enough for Taz to stop the rages, aggression, irritability, and depression. I was hesitant to start a mood stabilizer, the most popular and well-known being lithium, because the side effect can be more serious and you need to be having regular blood draws, a traumatic experience for all of us. But I discussed it with Dr.S and he thought we should try Depakote. Now all these med changes happened within the course of several months, not weeks or days. I don't want you to get that idea.
Depakote is a seizure med that has been around for a while and has also been used for young children. We do have to get blood work every few months, but we're hoping the benefits are worth it. It's still pretty new for us but so far, so good. Taz has had a wonderful week. I'm hesitant to say it's from the med combo right now because, even though one may have a mental illness, they can still have some wonderful and stable times. We are hopeful but also guarded watching Taz do so well.
When I went into the medication world, I said to myself, one medication at a time, maybe two at the most. I would not be one of those parents who keep adding medication upon medication until I create the "perfect child". Of course no one on this journey is expecting perfection. We are expecting stability. It's completely different in ways I can't really describe, but parents of bipolar kids out there know what I'm talking about. Now Taz is on three medications. Do I wish it was two? Yes. Do I wish it was none? Yes. Do I wish I don't even have to be writing this? Yes!
The plan started that if the depakote works, we would taper down the risperdal so that he would only be on two medications. But if the depakote works, like it seems to be now, I will be so scared to change anything for fear of destroying our stability. I guess we'll cross that bridge when we get there.
Next post I'm going to list some common myths about medication. All my experienced bipolar battlers please chime in!
Thursday, March 18, 2010
Kissing Frogs
We had to kiss a couple frogs (or something like that) before we found a psychiatrist that could and would help us. Actually, considering Taz was only three, and we only spent a period of a few months looking, we are incredibly lucky. I've heard from other parents finding the right psychiatrist took years. We started off with a psychologist, who we still see once a week for play therapy. Dr.B didn't want to diagnose anything but believed Taz could have bipolar disorder. Then we went for some testing at a well-known hospital. I had high hopes for this clinic, but was quickly disappointed, and even irritated at the clinician. I understand my child is young. And I understand that mental illness isn't usually diagnosed in preschoolers. But it's pretty clear that I'm a desperate, exhausted parent at the edge of my limits and resources, and I just needed help.
One of the problems I face is the matter of people not believing me. Actually, I'm pretty sure some of you are thinking that there's something wrong with me for allowing my son to be medicated with psychiatric substances at 3 years old. Or for allowing a psychiatrist (who is dictated by drug companies) to diagnose my son with some (made-up) condition just to make money. I am faced with this everyday. In fact, when I am in public and have to explain my son's behavior, I find myself very tempted to say he has autism. Why? Because there is so much awareness about autism that there is no look of confusion on strangers faces. Actually, people embrace autism. They feel extremely empathetic towards autistic kids and their parents. We would maybe even get special treatment if I stated Taz was autistic. But if I say he has bipolar disorder, people assume I'm either being naive and controlled by the psychiatry community or that I'm one of "those" parents who drugs their kids because I'm lazy and don't want to deal with typical rambunctious children. Well, I am telling you now, I am neither! But how do you explain that to the public? How do you explain that to your friends and family? Unless they've known someone with a mental illness, most people can't possibly understand, which leads them not to believe.
So, in talking with professionals, I run into the same problem. At least with those who are not experienced. And that's what happened with this particular hospital clinic. I didn't stay long. We did a few weeks of developmental testing but I didn't get a good feeling about this doctor so during that time I also started looking into other options. I was right. After the testing he didn't believe my concerns were serious. He didn't have anything to offer except therapy. Not even for sleep. So I thanked him for his obviously wrong opinion, and moved on. I must have called at least a dozen clinics, private doctors, and hospital programs looking for someone who would see a child so young and who takes our insurance.
Finally, when I almost lost hope, our pediatrician recommended a colleague who he trusts and who has years of experience working with very young children. So I made an appointment last November. I brought in lots of paperwork, accounts from his preschool teacher, mood journals, sleeping charts, his OT eval, etc. And there he was. Our prince. Dr.S immediately saw the severity of what we were dealing with. He diagnosed bipolar disorder so that we could start meds and get the services we needed. But he also clarified that he can't be 100% positive until Taz is a little older. But he does believe that Taz should be treated for bipolar disorder, sooner rather than later. And I've been very grateful to have found him.
So...then comes the medication trials. Or what I like to call, the guessing game.
One of the problems I face is the matter of people not believing me. Actually, I'm pretty sure some of you are thinking that there's something wrong with me for allowing my son to be medicated with psychiatric substances at 3 years old. Or for allowing a psychiatrist (who is dictated by drug companies) to diagnose my son with some (made-up) condition just to make money. I am faced with this everyday. In fact, when I am in public and have to explain my son's behavior, I find myself very tempted to say he has autism. Why? Because there is so much awareness about autism that there is no look of confusion on strangers faces. Actually, people embrace autism. They feel extremely empathetic towards autistic kids and their parents. We would maybe even get special treatment if I stated Taz was autistic. But if I say he has bipolar disorder, people assume I'm either being naive and controlled by the psychiatry community or that I'm one of "those" parents who drugs their kids because I'm lazy and don't want to deal with typical rambunctious children. Well, I am telling you now, I am neither! But how do you explain that to the public? How do you explain that to your friends and family? Unless they've known someone with a mental illness, most people can't possibly understand, which leads them not to believe.
So, in talking with professionals, I run into the same problem. At least with those who are not experienced. And that's what happened with this particular hospital clinic. I didn't stay long. We did a few weeks of developmental testing but I didn't get a good feeling about this doctor so during that time I also started looking into other options. I was right. After the testing he didn't believe my concerns were serious. He didn't have anything to offer except therapy. Not even for sleep. So I thanked him for his obviously wrong opinion, and moved on. I must have called at least a dozen clinics, private doctors, and hospital programs looking for someone who would see a child so young and who takes our insurance.
Finally, when I almost lost hope, our pediatrician recommended a colleague who he trusts and who has years of experience working with very young children. So I made an appointment last November. I brought in lots of paperwork, accounts from his preschool teacher, mood journals, sleeping charts, his OT eval, etc. And there he was. Our prince. Dr.S immediately saw the severity of what we were dealing with. He diagnosed bipolar disorder so that we could start meds and get the services we needed. But he also clarified that he can't be 100% positive until Taz is a little older. But he does believe that Taz should be treated for bipolar disorder, sooner rather than later. And I've been very grateful to have found him.
So...then comes the medication trials. Or what I like to call, the guessing game.
Wednesday, March 17, 2010
How I Know My Son Has Bipolar Disorder...
...or as best as one can know. I get asked this a lot, especially with his young age. Granted, it is a serious diagnosis with serious implications. It's also a very complex illness that has only begun getting unraveled. But now more than ever bipolar disorder is getting the attention it deserves. More research is going into it and professionals are looking for answers. And that's a good thing. Mental illness isn't like it used to be when doctors told parents to lock the children up, send them to institutions, or force them to endure electric shock treatment. We force them to endure med trials and frequent blood tests instead. Okay, all joking aside, people with mental illness have a far greater chance of living a normal life than ever before.
Back to the subject. Many people ask me how I can discern the difference between normal three year old behavior, a "spirited" or strong-willed child's behavior, and a more serious problem like mental illness. I have always known Taz was different, more difficult than most kids his age, and sensitive. The first couple years I blamed it on the terrible two's. They started early and he was just a more intense kid, at least that's what other people told me. When he turned three and things got even worse, I started to wonder about ADHD. Actually, I was pretty sure he would get diagnosed with that once he went to school. That's as far as my concerns went.
But then I happened to catch a show on HBO called "Boy Interrupted", which was a documentary about a family whose son had bipolar disorder, and at 15, committed suicide. When I heard the mother describing what he was like at a young age, the stories sounded eerily familiar. So I went to the internet and googled "bipolar disorder in children".
I had no problem believing bipolar existed but I had no idea it existed in children, let alone children as young as preschool. Come to find out, bipolar disorder looks very different in children than in adults, and it's still in the process of being more clearly defined. Anyway, I read through a checklist of symptoms and decided this needed further investigation. I must have spent 2 hours (I think I was supposed to be working) scrolling through every story and every bit of research I could find about bipolar disorder in children. When I realized it all fit, I was numb. I couldn't think, I couldn't make dinner, I couldn't even form the words to tell someone.
A couple weeks later I was still only beginning to believe Taz could have something this serious and had planned on putting it on the back burner until he was older. But, then he stopped sleeping. Literally, he went from sleeping just fine all the way through the night to suddenly only sleeping 3 or 4 hours per night for days on end. But it wasn't like he couldn't fall asleep or couldn't stay asleep, it was truly as if he didn't need sleep. He wouldn't even seem tired until 11pm some nights. Then be up at 3AM rearing to go for the day. He would say "I up!" like it was a beautiful cheery morning, sun shining, birds chirping.
So I called our pediatrician. He said to give him Melatonin, a natural hormone already produced in our bodies but given artificially to gently help ease you into the sleep cycle. It worked for a week or so, then it stopped. We upped the dose over and over until we were right at the edge of the healthy limit. Still didn't work. So our pediatrician recommended trying a psychiatrist.
It was around this time I started hanging around the online forums for parents of children with bipolar disorder. CABF (the Child and Adolescent Bipolar Foundation) is a great resource. I started to learn about all the intricacies these kids have in common. I also heard from other parents with very young children with bipolar symptoms starting medication and getting therapy.
As Taz's symptoms began increasing, I started to seriously consider getting a professional evaluation for bipolar disorder. We also did some blood tests to rule out any medical causes as well. So, I'm sure you are wondering what the symptoms of bipolar are and how a three year old displays them.
Periods of irritability: I don't mean just a little bit cranky because he's hungry or tired. I mean periods where you couldn't touch him, talk to him, or even look at him without him lashing out. Grumpy is an understatement.
Severe tantrums or rages: Not your typical kicking and screaming on the floor toddler tantrum. Taz would get completely out of control, hitting, kicking, scratching, sometimes biting, with all his strength. He was like a little wild animal fighting for survival. He would throw anything that happened to be in his path. When we put him in his room to calm down, he would destroy anything he could get his hands on. He's put holes in the walls, thrown trucks and step stools at us, and you can't even reach him because he's so far gone. These can last anywhere between 30 minutes to 2 hours to an entire afternoon.
Defiance: Ever hear of ODD (oppositional defiance disorder)? A lot of bipolar kids qualify for this diagnosis as well but I like to think of it as part of the bipolar instead of slapping a bunch of letters under his name. Most three year olds like to please adults. They like to be helpful and feel important. Not Taz. You could ask him to do the simplest task and you would receive a resounding "NO!" Even if I made it the most fun game in the world and offered lots of praise and encouragement, it was still "NO!"
Depression: There would be periods of hours where Taz would mope around the house, not interested in playing or doing anything. Nothing made him happy. I couldn't talk to him. He would be very quiet and tired. He had low energy and slept more during these cycles too.
Night terrors: These can be normal for some kids but they are also a symptom of bipolar disorder, along with other problems with sleep. I think I mentioned above that there were times when Taz just didn't seem to need sleep. He also experienced night terrors where he would wake up screaming, thrashing around, pointing at things on the walls and ceilings, and attacking us like we were some kind of creature from a horror film. It would take him sometimes an hour to calm down and go back to sleep. This would happen over and over each night.
Fascination with gore/violence: Taz hasn't had much exposure to these things. For older kids with bipolar this can be a very big issue. Fortunately it isn't for us yet. There was one occasion recently where we drove by a tree cutter on the side of the road and Taz said, "that cuts Chica's head off." Then he stated that he was going to kick Chica's head off. That may be normal feelings of jealousy but expressed in a much more violent way than most three year olds. I can't leave Taz alone with his sister because I can't trust him to be safe.
Anxiety: Taz has some anxiety pretty constantly. But there are random points during the day or week where he has severe separation anxiety that can result in an emotional meltdown. There was one time when all of us were shopping at Target and DH stepped away for one minute to look down an aisle. Taz about had a heart attack that daddy left. He rammed the cart into a shelf and started attacking me. Taz is also very sensitive to changes in routine and environment. His anxiety gets set off very easily and it effects his sleep majorly and he gets clingy during the day.
Hyperactivity: Again, most bipolar kids qualify for more than one diagnosis, ADHD being one of them. I prefer not to state that he does have this although he probably would qualify.
Mania: This can look a little different in each child. Some get very goal oriented. Some spend or want to spend a lot of money. Some engage in risky behavior. For Taz, I can tell when he's manic because he gets this crazy look in his eye, and it's hard to explain, but I feel like something has taken over his body and he's lost all control. Hyper would be an understatement. But he will jump off high surfaces. He gets very silly and giddy beyond control. He laughs at inappropriate things. He can't calm down. He goes from laughing to screaming to crying in a matter of 30 seconds. One time he kept running at me trying to bit me while laughing hysterically.
Hypersexual: This is part of mania. When Taz is manic he will try to grab butts and boobs. He also rubs himself on things and gets obsessed with talking about and touching private parts. More than just curiosity, it gets out of control. Again, this is without exposure to sexual content.
Racing thoughts/Talking incessantly: It was 11pm one night and we were trying to get Taz to bed. DH went into his room and Taz was talking a mile a minute about one thing, then switching rapidly to another, and couldn't stay organized or focused but just had to talk. There was another time when we were in the grocery store and he was walking ahead of us literally naming and talking about every single item we walked by over and over. It was like an engine was running inside him that he just couldn't stop.
Grandiosity/Inflated Self-esteem: Taz will dispute me to the very end of a discussion about what he thinks is right. He constantly tells me how to drive. He'll ask why we're going this way, I tell him that's the way to go home. And he emphatically says "no". And I tell him to trust me that I know where we're going. He will argue up and down that I'm not going the right way. This is just one example.
Taz fits most of the main symptoms, but also down to the more subtle symptoms. Craving carbs, getting hot easily, being more hyper in the evening, poor working memory, sleep reversal, issues reading facial features and social cues, the ability to hold it together in front of other people then lashing out at home, and probably more that I can't think of now.
So...that's a lot of information. Any questions?
Next post I will write about our journey to therapy and medication. What's working now and what's not. Then we'll go from there.
Back to the subject. Many people ask me how I can discern the difference between normal three year old behavior, a "spirited" or strong-willed child's behavior, and a more serious problem like mental illness. I have always known Taz was different, more difficult than most kids his age, and sensitive. The first couple years I blamed it on the terrible two's. They started early and he was just a more intense kid, at least that's what other people told me. When he turned three and things got even worse, I started to wonder about ADHD. Actually, I was pretty sure he would get diagnosed with that once he went to school. That's as far as my concerns went.
But then I happened to catch a show on HBO called "Boy Interrupted", which was a documentary about a family whose son had bipolar disorder, and at 15, committed suicide. When I heard the mother describing what he was like at a young age, the stories sounded eerily familiar. So I went to the internet and googled "bipolar disorder in children".
I had no problem believing bipolar existed but I had no idea it existed in children, let alone children as young as preschool. Come to find out, bipolar disorder looks very different in children than in adults, and it's still in the process of being more clearly defined. Anyway, I read through a checklist of symptoms and decided this needed further investigation. I must have spent 2 hours (I think I was supposed to be working) scrolling through every story and every bit of research I could find about bipolar disorder in children. When I realized it all fit, I was numb. I couldn't think, I couldn't make dinner, I couldn't even form the words to tell someone.
A couple weeks later I was still only beginning to believe Taz could have something this serious and had planned on putting it on the back burner until he was older. But, then he stopped sleeping. Literally, he went from sleeping just fine all the way through the night to suddenly only sleeping 3 or 4 hours per night for days on end. But it wasn't like he couldn't fall asleep or couldn't stay asleep, it was truly as if he didn't need sleep. He wouldn't even seem tired until 11pm some nights. Then be up at 3AM rearing to go for the day. He would say "I up!" like it was a beautiful cheery morning, sun shining, birds chirping.
So I called our pediatrician. He said to give him Melatonin, a natural hormone already produced in our bodies but given artificially to gently help ease you into the sleep cycle. It worked for a week or so, then it stopped. We upped the dose over and over until we were right at the edge of the healthy limit. Still didn't work. So our pediatrician recommended trying a psychiatrist.
It was around this time I started hanging around the online forums for parents of children with bipolar disorder. CABF (the Child and Adolescent Bipolar Foundation) is a great resource. I started to learn about all the intricacies these kids have in common. I also heard from other parents with very young children with bipolar symptoms starting medication and getting therapy.
As Taz's symptoms began increasing, I started to seriously consider getting a professional evaluation for bipolar disorder. We also did some blood tests to rule out any medical causes as well. So, I'm sure you are wondering what the symptoms of bipolar are and how a three year old displays them.
Periods of irritability: I don't mean just a little bit cranky because he's hungry or tired. I mean periods where you couldn't touch him, talk to him, or even look at him without him lashing out. Grumpy is an understatement.
Severe tantrums or rages: Not your typical kicking and screaming on the floor toddler tantrum. Taz would get completely out of control, hitting, kicking, scratching, sometimes biting, with all his strength. He was like a little wild animal fighting for survival. He would throw anything that happened to be in his path. When we put him in his room to calm down, he would destroy anything he could get his hands on. He's put holes in the walls, thrown trucks and step stools at us, and you can't even reach him because he's so far gone. These can last anywhere between 30 minutes to 2 hours to an entire afternoon.
Defiance: Ever hear of ODD (oppositional defiance disorder)? A lot of bipolar kids qualify for this diagnosis as well but I like to think of it as part of the bipolar instead of slapping a bunch of letters under his name. Most three year olds like to please adults. They like to be helpful and feel important. Not Taz. You could ask him to do the simplest task and you would receive a resounding "NO!" Even if I made it the most fun game in the world and offered lots of praise and encouragement, it was still "NO!"
Depression: There would be periods of hours where Taz would mope around the house, not interested in playing or doing anything. Nothing made him happy. I couldn't talk to him. He would be very quiet and tired. He had low energy and slept more during these cycles too.
Night terrors: These can be normal for some kids but they are also a symptom of bipolar disorder, along with other problems with sleep. I think I mentioned above that there were times when Taz just didn't seem to need sleep. He also experienced night terrors where he would wake up screaming, thrashing around, pointing at things on the walls and ceilings, and attacking us like we were some kind of creature from a horror film. It would take him sometimes an hour to calm down and go back to sleep. This would happen over and over each night.
Fascination with gore/violence: Taz hasn't had much exposure to these things. For older kids with bipolar this can be a very big issue. Fortunately it isn't for us yet. There was one occasion recently where we drove by a tree cutter on the side of the road and Taz said, "that cuts Chica's head off." Then he stated that he was going to kick Chica's head off. That may be normal feelings of jealousy but expressed in a much more violent way than most three year olds. I can't leave Taz alone with his sister because I can't trust him to be safe.
Anxiety: Taz has some anxiety pretty constantly. But there are random points during the day or week where he has severe separation anxiety that can result in an emotional meltdown. There was one time when all of us were shopping at Target and DH stepped away for one minute to look down an aisle. Taz about had a heart attack that daddy left. He rammed the cart into a shelf and started attacking me. Taz is also very sensitive to changes in routine and environment. His anxiety gets set off very easily and it effects his sleep majorly and he gets clingy during the day.
Hyperactivity: Again, most bipolar kids qualify for more than one diagnosis, ADHD being one of them. I prefer not to state that he does have this although he probably would qualify.
Mania: This can look a little different in each child. Some get very goal oriented. Some spend or want to spend a lot of money. Some engage in risky behavior. For Taz, I can tell when he's manic because he gets this crazy look in his eye, and it's hard to explain, but I feel like something has taken over his body and he's lost all control. Hyper would be an understatement. But he will jump off high surfaces. He gets very silly and giddy beyond control. He laughs at inappropriate things. He can't calm down. He goes from laughing to screaming to crying in a matter of 30 seconds. One time he kept running at me trying to bit me while laughing hysterically.
Hypersexual: This is part of mania. When Taz is manic he will try to grab butts and boobs. He also rubs himself on things and gets obsessed with talking about and touching private parts. More than just curiosity, it gets out of control. Again, this is without exposure to sexual content.
Racing thoughts/Talking incessantly: It was 11pm one night and we were trying to get Taz to bed. DH went into his room and Taz was talking a mile a minute about one thing, then switching rapidly to another, and couldn't stay organized or focused but just had to talk. There was another time when we were in the grocery store and he was walking ahead of us literally naming and talking about every single item we walked by over and over. It was like an engine was running inside him that he just couldn't stop.
Grandiosity/Inflated Self-esteem: Taz will dispute me to the very end of a discussion about what he thinks is right. He constantly tells me how to drive. He'll ask why we're going this way, I tell him that's the way to go home. And he emphatically says "no". And I tell him to trust me that I know where we're going. He will argue up and down that I'm not going the right way. This is just one example.
Taz fits most of the main symptoms, but also down to the more subtle symptoms. Craving carbs, getting hot easily, being more hyper in the evening, poor working memory, sleep reversal, issues reading facial features and social cues, the ability to hold it together in front of other people then lashing out at home, and probably more that I can't think of now.
So...that's a lot of information. Any questions?
Next post I will write about our journey to therapy and medication. What's working now and what's not. Then we'll go from there.
Tuesday, March 16, 2010
Welcome!
This blog is an avenue for me to speak openly about my son's special needs while maintaining his privacy. So you will not be seeing photos or real names on this blog. But I will be completely open and honest about what living with a child with bipolar disorder is like. The ups and downs, the good parts and bad parts, and how it affects us in both positive and negative ways. I welcome and encourage comments. I would love to link to other blogs, especially ones with similar topics, so please leave a comment with your blog info and I will link to you. For all intents and purposes my name is "J", my husband will be referred to as "DH", my son is "Taz", and my 1 year old daughter is "Chica".
About the blog name, well, I needed something catchy. But I don't really think we are "battling" bipolar. I think we are kicking bipolar's a$$! But for real, bipolar disorder is not a death sentence. But it is a lifelong journey. And it's hard to live with but success and happiness can be found. And this will chronicle our steps getting there.
In the next few days I will bombard you with the beginning story of my son and our journey in learning about bipolar disorder. So come back soon.
About the blog name, well, I needed something catchy. But I don't really think we are "battling" bipolar. I think we are kicking bipolar's a$$! But for real, bipolar disorder is not a death sentence. But it is a lifelong journey. And it's hard to live with but success and happiness can be found. And this will chronicle our steps getting there.
In the next few days I will bombard you with the beginning story of my son and our journey in learning about bipolar disorder. So come back soon.
Subscribe to:
Posts (Atom)