It's Been SO Long!

First of all...sorry, sorry, sorry. I truly feel bad neglecting my blog and all of yours too. But I'm trying to finish my book! Arg! Who knew it would be so hard to write a book? It's just one itty bitty two hundred and fifty page fiction novel.

Anyway, I've returned (today anyway) to update on our family.

Taz and Chica feeding ducks at the apple orchard - September 2010

Taz is doing...better than before the hospital. That's about all I have to say. We have some very good days. Most other days are just so-so. Then we have some bad days. But the bad days aren't as bad as before the hospital. And that's how I judge everything now.

The Intuniv seems to be keeping away the mania. And as we know, the mania is the scariest symptom (at least it is for me).

No restraint and no impulse control. Yikes.

We are still in the in-home program and although they don't have any miracle solutions for us, it's good to have someone on our side. I love our worker. She's great with Taz.

We've gone to a couple other specialists for second opinions. I've come to the point where I don't really care about an accurate label anymore. His brain is so confusing, I don't think it will ever fit neatly into one diagnosis.

We had him evaluated by a geneticist, specifically for FAS (fetal alcohol syndrome) but they are doing other genetic blood testing as well. I know that Taz's birthmom drank during pregnancy and I thought that he might fit the specifications for the full FAS diagnosis. But he doesn't. I suppose I shouldn't be surprised. Like I said, Taz will never fit in a box.

The geneticist said that Taz has some physical traits that show something happened during early pregnancy but he can't say for sure it was alcohol, even though it's been reported she drank. And he doesn't have enough physical features for the full syndrome. So again, we have speculation that he has fetal alcohol effects, but the doctor didn't diagnose it.

Whatever.

Our newest diagnosis was decided upon by the in-home program psychiatrist, who conferred with our regular psychiatrist and together they agreed upon... (enter drum roll)

Reactive Attachment Disorder (RAD)

At first I said bull shit.

But now that the bipolar layers are pulled back (because of the meds) I do see A LOT of anxiety. Which is becoming a big problem in school.

So big that Taz is not participating in activities but laying on the floor rocking with his stuffed animal instead. Or crying. Or they let him leave the classroom to play in the gym. Which is a whole other issue I need to talk with them about. I'll save that for another post.

Anyway, anxiety is huge right now. And although I think Taz is attached to us, I think that it's an insecure attachment, at least right now.

The thing with attachment and adoption is that it can be strong at one time, then shaken another time. And his is shaken right now.

Because of starting a new school.

Because my husband had a string of business trips this fall.

And because I've been working weekends on my book.

So I think attachment is playing a part of things right now. But like the psychiatrist said...

Taz will probably qualify for a few different diagnoses and at different times of his life, different labels will be in the forefront.

He also wants us to see a developmental pediatrician to have PDD-NOS (autism spectrum) ruled out. I really don't feel like anymore appointments, or testing. But it's a long wait list anyway.

Anyway...

that's it for us!


I'll check up on all your blogs soon. I promise.


*** Oh! Question: any suggestions on how to get a kid like Taz to use nicer language? I'm so tired of hearing "shut up" and "stupid" all day.

The Hunt for the Elusive Diagnosis, Again

Things have been...unbalanced here. We found a new psychiatrist through the in-home program. He raised the Intuniv after seeing Taz literally bouncing off the walls in his office. Taz has been sleepy since in the increase but that effect has worn off before. Hopefully it will again.

The new psychiatrist diagnosed Taz with Mood Disorder NOS with questionable ADHD and PDD-NOS. He recommended seeing a developmental pediatrician to get formal testing done (mostly IQ because the in-home team keeps hinting that Taz may have borderline MR) and to rule out autism spectrum.

But I'm not going to. IQ tests are only accurate once every three years and I'd rather do it right before he enters "real" school where we may need to fight harder for services. Plus, I just don't feel like doing more testing.

There's another diagnosis we are waiting to be evaluated for that we feel pretty certain about Taz having. It's FAS (Fetal Alchohol Syndrome). I confirmed recently that his birth mother drank while she was pregnant. He has some of the facial features and many of the characteristics. A specialist is reviewing his medical file and then will call me for an appointment.

If he has FAS, it doesn't change anything. Not course of treatment, not medications, not school setting, maybe our expectations for the future? But what I feel strongly that it does do is make professionals (teachers, therapists, etc) view Taz more as a victim than a spoiled brat who's mother is too lazy to discipline him (or whatever they happen to believe about mental illness and medication). If he has the label of FAS, I think he'd be treated with more compassion than disdain.

Anyway, that's all that's going on here. He's had a few days in the row that were looking a lot like before we went to the hospital back in July. But with the medication change and school starting I'm waiting to see if things stabilize in a few weeks before I start freaking out.

Sorry I've been negligent about reading other blogs. All my free time is spent on my book, which is almost done by the way. I had two people from my target audience read the first half and they loved it. The next step after I finish it is to send it out to members of my target audience (women who like supernatural romance) then make edits with their advice. Then I'll send it to an editor and make changes she suggests. Then off to the publishers! Oh, and offer it on Kindle. That's where the real money is anyway. Kindle sales have lower overhead than print so you can make more money that way. But I want to see it in print too. And I'm not really expecting to make money on my first book. I just want people to read it and like it. But my second book...that's where I want to see some cha-ching!

Good News, Bad News

Since leaving the hospital we've had an intensive in-home psychiatric service at our house twice a week. We were working with two clinicians. The case manager was wonderful, but didn't come as often as the regular clinician. I had high hopes for the clinician because 1) he was male, and Taz really looks up to men and 2) he worked for years in a psychiatric hospital.

Well, after week three I realized he's kind of a dud. He might be good with older kids, I don't really know. But he seemed very uncomfortable around Taz and I wonder if it might be because of his age. Sometimes men have trouble with younger kids. Again, I don't really know. But he wasn't helpful. Beyond saying, "that's not nice," any time Taz did something aggressive or mean, he didn't offer much else.

Two weeks ago he brought another clinician from a different team who has special experience with sensory issues. She wasn't assigned our case but was offering a consultation to help.

I loved her!

She "got" Taz right off the bat. She didn't hesitate to jump in when he was having a problem. She talked him through his feelings about why he's mad at me and calling names. She was calm but confident. She was awesome!

So, I called the director of the program the day after and asked to be switched to her team.

She said yes!

Actually, she said that the girl came back from our house and asked why she wasn't given our case. She obviously felt the same connection.

Let's call her "Katie". She came last week and in one session did more than the other clinician did in four weeks.

I'm very excited to work with her!


That's the good news.

Here's the not so good news.


I can see Taz deteriorating again. I'm hoping it's just the anxiety of starting school. Or maybe because his sleeping patterns have been a little off.

But I'm really really really really really hoping he stabilizes quickly. I am NOT looking forward to another medication change.

Actually, I'm terrified of it.

And I'm most definitely terrified of ending up back in the hospital. I nearly have a panic attack when I think about it. And even though it helped in the long run, it felt like a nightmare.

So, send happy, fuzzy, lovely, positive thoughts our way if you can.

We Just Won the School Jackpot!

Holy Freakin' Miracle!

I've been worried about Taz's new school since before summer even started. They've been giving me a hard time about everything.

Then I get a phone call from his teacher last week to schedule a home visit (all the teachers visit all their students before school starts in our city), and she informs me that she is not a special ed teacher.

Basically, the district is stingy. They hire regular ed teachers for all the classrooms, then one special ed teacher to rotate through providing just enough time in each classroom to satisfy the legal requirements for each child with an IEP. Blah. I was geared up for a fight.

But all my frustration and fears were put to rest with four little words.

My daughter has bipolar.

The teacher said it. Her daughter is 24 yrs old but has had it since she was a child. Then she said, "I'm speaking to you as a parent not a teacher. Your son might do well in school then fall apart at home. It's not your fault. It has nothing to do with you as a parent. It's because he feels safe with you. This is a long journey. I understand that there are things that happen with our kids that can't be fixed. I understand how hard it is to accept and how much you want their pain to go away. You won't find judgment here. I will advocate for your son and his needs. It's good we're starting early."

Halleluhah! Can I get an amen for this miracle?!





Someone who gets it. Right off the bat before even knowing us or my son, gets it.

With the last school system I was stared at, judged, met with silence when I explained things about bipolar disorder. And this lady is now telling me about bipolar.

Seriously. God must have had something to do with this.

And that's not even the only good news I received today. But you'll just have to wait till I have more time to write the other news.

Please Read This

Someone brought to my attention that my last post could have easily offended someone very important to me. So I just wanted to clear things up.

When I wrote that I wanted the in-home people to call my mom to validate myself, I was truly joking. I thought it sounded funny. One of my faults is that I'll do anything to make people laugh.

Of course I wouldn't lump my mom in the category of arrogant assholes at the hospital. But, we do have a history. It was probably too soon for a joke about it but I'm too stupid and clueless to notice that. (Part of my doing anything to get a laugh trait.)

Back before Taz's behaviors were truly disturbing, he looked a lot like a spoiled brat having long drawn out tantrums because we weren't disciplining him well. And I was extremely self-conscious because I thought that part of it must be my fault. No one was really seeing how hard it was to disciplining him. To make him stop, to make him change. It was easy to judge and it was easy for me to become sensitive to it.

The truth is..."mom" could have been substituted for anyone in order to get my point across. It could have been dad, in-laws, brother, church, even husband.

Dh has told me on more than one occasion that because the kids are better around him, the problem must be me. I told him that's because he let's them do whatever they want. Boom! Explosive argument.

The point to my post wasn't who was to blame for my feeling the need to be validated. Just the fact that it felt nice to get it. I'm an exaggerator. Everyone who knows me knows that about me. It's part of what makes me a writer and a good storyteller. But it can also destroy your personal life. Like hurting people you love by accident.

My mom is often the target of family jokes because...well...she's around. And that's harder than it seems. My dad was gone most of my life. My mom had to work really hard to create the life my brother and I had. I've written about my own childhood memories on this blog before, and about wanting to recreate them with Taz and Chica, so you know it was good.

Not just that but then we go and adopt a child with mental health issues that she has no biological relation to and just demand everyone accept him and deal with what comes. And she's taken it all in stride.

She loves Taz. Very very much. And Chica too of course.

I think because I'm constantly overwhelmed and everyone tells me that I need more help, I just expect that the people who are available to help should be doing it. All the time. It's my own unrealistic expectation, I know that. But I'm so wrapped up in the chaos around me that I sometimes ignore other things.

Like offending someone on my blog.

Oh Sweet Validation!

We've had the Intensive In-home Psychiatric Team in our house now for about 4 weeks. Last week the main clinician and the case manager came together. The case manager started out talking about some resources she's found for us. Because this is a temporary service, a big part of their job is to hook-up families with other resources that could be involved...blah blah blah...let's skip to the good part.

The good part is that they both admitted that they can't really help us.

Okay, okay...I know that doesn't sound good. But the point was that there isn't anything they can do to teach us better skills as parents. They can see we are already doing everything we can for him.

And I'm not saying this to brag, or to seem like I'm a perfect parent.

I'm not perfect. I yell. I give in. I bribe.

But.

Taz's issues are not caused by us. Nor are they exacerbated by lousy parenting. We are good parents. We handle him very well. So well that there's almost nothing for them to do except give a helping hand.

I was beaming.

Thank you. Thank you. Thank you. Thank you.

Now. Can you please call our psychologist and tell her that?

And then our psychiatrist?

And also the assholes at the impatient unit in the hospital?



It's such a burden being right all the time, isn't it?

How to Scare Away Potential Friends

Taz recently got invited to his first birthday party in a long time. A little girl from his preschool class. I've had one conversation with her mom throughout the entire school year but, hey, I'm not complaining. We don't get a lot of invites.

So just last week we ran into this little girl and her dad at the mall. The first thing Taz says to the little girl, with her dad listening is...

I rode on an ambulance!

He is, of course, talking about our most recent hospitalization. He's never been on an ambulance before that. Now, maybe you think I shouldn't feel shy about sharing the fact that my son needed to be hospitalized in a psychiatric unit for a week, and so, in order to de-stigmatize mental illness, I should have been forthcoming with this information.

You are probably right. But I ain't that noble. And sometimes my little family is more important than the rest of the world. Yes, you read that right. So, changing the minds of millions of people about mental illness is indeed important. But it's not my only job.

So...in wanting to keep this new trend of being invited to birthday parties, I am sad to say I did not do my duty to mankind and fight the stigma of mental illness. Sorry. It's not because I'm ashamed. It's just that telling someone who is barely an acquaintance about my son's psychiatric issues (my four year old son to make it worse) is going to guarantee a lot of questionable looks.

So what did I say instead?

Usually I'm pretty good at thinking on my feet. I've always been a good liar which is why I always appeared to be a good kid because I never got caught. And when I did, I lied my way out of it. Well, I think this parenting thing has killed a few hundred brain cells or so because I was speechless. I couldn't think of a single reason my son could go to the hospital other than psychiatric episode.

Here's how the conversation went.

Taz: I went on an ambulance!

Little Girl: What happened?

Silence.

Me: Well! (spoken in my best child-friendly cheerful voice (a strategy to distract attention away from the vague answer), Taz had to go to the hospital!

Stupefied silence.

Dad: Who was the paramedic?

Me: What?

Dad: I know all the paramedics that work in (enter town's name).

Me: Of course you do! (spoken sarcastically in my head)

Dad: Was it a lady? It was (enter generic name) wasn't it?

Me: Uhh....no. We were at the children's hospital. Then...we were...transported to another hospital...to...uhh...special unit...mumble mumble mumble....


**** Pause. Anyone ever see the movie Rat Race? There's a part where a guy is getting a ride from a girl to Sante Fey, New Mexico. When she asks him why he needs to go there, he lies. He says that his sister got hurt. She asks what happened. He panics and says shark bite. She looks at him like any of us would, "Shark bite? And she's being treated in New Mexico?" So he exaggerates the lie. Yes, they have a special shark bite unit there. The best in the world. In landlocked New Mexico. Yeah, I felt a bit like that.


Dad: Oh. (Clearly disappointed and confused)

Me: What was that Taz? You have to go to the bathroom? Oh. We better go then. (Pushing kids down the hall). See you at the party! Thanks for the invite!


At least I'm prepared for next time. I think I'll use the shark bite story. That's a good one, right?