My Even Worser Worst Fear

That in order to keep everyone safe, I will have to choose between my two children.

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?

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?

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 =)

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?

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?