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?

Lithium, You Dirty Rat!

Dh found a Lithium supplement online that requires no prescription. Dr. S (Psych) thought it wasn't worth it to try since it's probably in doses too small to make a difference. Yet he won't prescribe it so we don't really have anything to lose for trying the supplement.

We started it about two weeks ago. And guess what? It's actually kinda working. We're not seeing much depression anymore. He's having some lulls during the afternoon, more to do with needing a nap or being overstimulated. So, the combination of Intuniv (for impulsivity), Invega (anti-psychotic), and Lithium supplement (for mood), has made Taz manageable. Not perfect. He still has "issues". But much better. We're even able to do some of the fun activities I wanted to this summer. Last week we went to a dinosaur park and I was panicked it would be a disaster (it was a particularly expensive park so it was a risky move) but we had an awesome time!

In other news, Taz has learned a new phrase, I think from the hospital since that's when I first started hearing it. It actually cracks me up every time he says it because it just sounds weird coming out of a four year old's mouth. Can you guess what it is?

Yes... dirty rat.

Dirty rat. This is what Taz has taken to calling me when he's mad or annoyed. I feel like I've been dropped into a 50's gangster movie. Weird.

The recent absence of new blog posts has been party because our in-home service started and I'm waiting to hear what they think. We are also exploring a new direction having to do with diagnoses that I will reveal another time.

And....I'm writing a book. Yes, you read that write (ha ha). It's fiction. Supernatural Romance, to be more exact, but with lots of action. But no vampires. Don't lie, I know that's what you were thinking. I'm about half way done. My goal is to finish in six months and send it out to publishers. I want it published. That's why I'm writing it. But, it's also very therapeutic.

I'll update if it does actually get published.

Maybe some of you would like that genre?

Depression and Hospitals

I'm interested in what you have to say about depression.

It's such a nasty word isn't it? Depression. It just sounds sad.

But it's worse than sad isn't it? People who've never experienced it, or even witnessed someone depressed, think that it would be easy just to snap out of it. But that's not how it works.

I've been depressed. I know how it feels. And now I have to watch my 4 year old feel it. It's horrible. All day yesterday he cried, hysterically, off and on for no reason. Nothing particular happened, there was nothing wrong with him. Nothing except the enormous feeling that the world is against you and nothing can ever make you happy again.

He says over and over "no one likes me". He doesn't want to play with anything he normally enjoys. He just lays around whining, crying, or sleeping.

It's heartbreaking to watch. He comes to me for comfort, which I can give, but help I can not. I can't fix what's organically going on in his brain. All I can do is hold him and tell him I'm sorry he feels so sad. And that so many people love and like him. I'd love to be able to pick him up and put a band-aid on his boo-boo and that that would be enough to make him feel better. But depression is a big boo-boo. Too big for a band-aid.

It hurts me when he gets this way. I wish I could feel it for him. I wish I could take away the pain and sadness. At least I would know that it doesn't last forever. That eventually the mood lifts and you see the sun again. To Taz, it feels like the world is dark and lonely. He doesn't know if it will ever end. It hurts my heart and my soul.





Speaking of depressing...the kids in the psychiatric hospital with Taz. Until recently I hadn't even known such places existed for children. Entire units of hospitals set aside for children with mental health issues. I don't know why all the kids were there. I can guess. There's only two ways to get a spot in a psych hospital. You either have to be in danger to your self....or to others.

We went to a parent's support group at the hospital while Taz was there. One 12 year old boy had tried to light his parent's house on fire. Like, he had actually poured the gasoline around it and everything. There was a 5 year old boy that sounded like Taz. He had tried to stab his mother with a knife.

One thing that will be ingrained in my mind is how many of the kids were sound asleep in random places every time I visited. It just doesn't seem normal. I suppose it's because of the medication. The doctors and nurses told me that because they raise the doses much faster in the hospital it tends to knock the kids out, until their bodies adjust. But every time I visited there was a kid sleeping on a chair in the day room. Or a sleeping child being carried into their bedroom by the nurse, including Taz. It just brought to mind the expression "drugged up". And a lot of them were. At least the little ones.

But it's a reminder of where we are...and why. Sometimes you look around and see normal children doing normal children things. Playing video games, watching cartoons, teenage girls doing each other's hair. Then you hear screaming and swearing coming from one of the seclusion rooms and the normalcy is gone. And you remember where you are.

I don't think I'll ever forget the experience. Not just the trauma of having my son there (cause we all know how traumatic that was for me as written here), but just that such places exist. That such places even need to exist. As I walked through the hallway and looked at their faces, it made me incredibly sad. Sad that we live in a world where children can get so sick. And little ones who are so innocent by nature can have such big problems. Problems that most adults can't even handle. Then we expect little children to not only handle these big feelings but also control themselves, learn in a classroom, make friends, and generally act like typical children.

It doesn't seem fair.




And worse, it seems likely we'll be back there someday.

Give Peace a Chance

First of all, thank you so much for your overwhelmingly kind and supportive words after my last post (I've responded to most of the comments below). I was really surprised so many of you understood what I was trying to express. Which is more than I can say for....others. But enough of that.

Anyway, the last few days have been really good actually.

Taz is still having mood swings (anyone surprised?). He still has periods of hyperactivity mixed with periods of depression/anxiety. BUT....

When he gets upset he is recovering faster.

He seems to be better able to control himself.

He can tolerate being around Chica most of the time.

He is using his words more.


He is still having violent thoughts but he is expressing them and moving on, instead of fixating or acting them out. He is also describing some pretty scary dreams so I told him to put daddy in his dreams to protect him and he hasn't complained since.

But he seems to be doing pretty well on this med combo (cross your fingers). I'm trying to enjoy this time without worrying too much about the future.

I'm waiting for it to wear off but at the same time hoping that we'll have a few months of this peace. Well, this seems to be as peaceful as it gets in our house. But it feels good.



Speaking of feeling good. This is totally going to be me on Saturday. It's our anniversary and we're getting a couple's massage. I'm so excited. Looking at this picture I can almost hear the sighing now. Ahhh.....

Trauma Effects vs. Mental Illness

Since Dr. F gave his opinion that many of Taz's issues are related to early childhood trauma, I've been doing some reading up. But first, here's some background.

Taz spent almost his first year of life with a very loving kind older woman who fostered babies until they went home or to pre-adoptive families. When Taz was about to turn one, two very traumatic events took place.

One, he had his palate surgery, which is a big operation. And two, he moved from the only mom he ever knew to a pre-adoptive family. So, as he was healing from his surgery, he was also transitioning to a new family. One that included a mom, dad, and 6 yr old brother. Oh, and an entire farm.

Taz went from living in a quiet environment with one caregiver in a small home to living on a farm with a family of four. All the while, healing from a major operation.

He had just turned one, which is significant in my mind. A lot of developmental growth happens just before and after 12 months of age. Most are exploring how to use their legs for walking instead of crawling. Many babies are also beginning to communicate with words or gestures. They are also in the throes of stranger anxiety and making significant relationships with other adults outside their family. They are quickly developing fine motor skills like feeding themselves and drinking from a cup. There's a lot going on for a one year old!

Taz should have been going through all these stages, but instead he was dropped from one traumatic event, surgery, to another, a complete change in environment and losing the one caregiver he felt safe with.

(Taz right after surgery)

So, he was supposed to be healing from surgery, meeting major gross motor and language skills, all without the support from anyone he knew and trusted. We know from Maslow's Hierarchy of needs there can be no growth or development if safety is not first achieved.

Taz did not feel safe, therefore he did not learn to walk or talk when he should have.

We also know how important bonding and attachment is to a child. Studies have shown that attachment within the first year of life is crucial to the development of most social skills (and sometimes even survival as the case of overcrowded orphanages with high infant death rates). This pre-adopt family didn't understand that. I believe that for the three months that Taz was in this pre-adoptive home, he had no bond or attachment with anyone.

He was lost.

Taz's speech therapist had visited Taz at the pre-adoptive family's home during this time. She said Taz sat in the middle of the room with his back towards everyone and didn't smile at all, as if he were depressed.

This family probably had all the best intentions in the world, but they had a farm to attend to. Taz was a very high needs baby. He needed someone to be with him ALL the time. To hold him, rock him, feed him, sing to him, carry him around constantly, for at least the first few months.

I think this family expected Taz to fit into their world instead of going into his.

They expected him to be a typical one year old. Actually, I think they expected him to be better than a typical one year old.

I received a letter when Taz came to us from this mother, mostly about his schedule and what kind of foods he liked. But there were several parts that jumped out at me that I've written below. Now remember, this is a very traumatized one year old we're talking about.

"Taz is selfish and thinks the whole world revolves around him. He needs to learn to wait and that other people have needs too."

"Taz is lazy so you have to hold his hands and make him walk everywhere. We are also making him use sign language to communicate."

Think about this for a minute.

Taz is one. All one year olds are selfish and think the world revolves around them! Not just that but he really needed someone to give him extra attention and extra love and meet his needs extra fast so he knew he was safe.

Also, they didn't seem to recognize that this was a fragile child that needed lots of time to acclimate to a new living environment and a new family. Instead they pushed him into the developmental stages they felt he should be doing way before he was ready. Before he knew he was safe.

Here's the sad part. When Taz came to us (I'll get into that trauma in a minute), any time we tried to stand him on his feet while holding his hands for balance he would start screaming bloody murder. When we stopped, he would stop. I think he had negative feelings associated with being on his feet. No wonder he didn't walk until almost 18 months!

(He did eventually learn to walk and talk)

He was also in no place to learn to communicate. He needed to know he could depend on his new family to meet his needs no matter what.

I've been told by an unnamed source that there was a referral on this couple called in for possible abuse and neglect. I don't really know what happened there. I don't think they abused him but I don't think they were particularly good to him either. They may have left him in his crib crying for long periods of time. At least that's what I heard. But before social workers could investigate the family called to say they wanted Taz out of the house by the end of the week. Their reason was because "he cried too much".

So the department of children and families had an emergency meeting to pick out a new pre-adoptive family for Taz. That's when we entered the picture. With two days notice, they told us about Taz. Then the social worker picked him up from the home he'd been in for 3 months, dropped him off at our house, then said goodbye and good luck, all in one day.

Trauma number three. Even though Taz didn't bond with the last family, it didn't do him any good to dump him with yet another family he didn't know within mere months of the last move. All he knew was that the last two sets of caregivers had disappeared and (even though we ultimately turned out to be pretty cool people) again he had to navigate a new environment and more strangers. New sounds, new smells, maybe new types of foods, new pets, new routine, etc. How scary!

If we had neglected his needs for nurturing and instead pushed his development like the last family, Taz would probably have RAD (reactive attachment disorder). But we didn't. I quit my job to stay home with him. We didn't let anyone babysit for several months. We held him all the time. I carried him in a sling. We rocked him to sleep every night. We spent tons of time with him, playing peek-a-boo, bathing, massaging, cuddling.

We didn't push him to walk or talk. We met all of his needs for him whether he was able to on his own or not. We made him depend on us for everything. Gradually he learned to trust us. And only then did he start meeting his milestones. Very late. But late is better than never. And late is better than RAD.

(Taz and Daddy, a special bond)

I've been reading a book by a psychiatrist who specializes in childhood trauma. I've learned a lot.

First, trauma, no matter how small, impacts the brain. The earlier it happens the more devastating the effects are. Taz certainly shows some effects from his early trauma. For one, I believe this triggered the bipolar symptoms. Two, he's very anxious. Three, he has the survival instinct that kids with traumatic backgrounds do. Four, he has trust issues.

I think trauma does account for some of the "fight or flight" response we see.

BUT. I don't think it's everything.

Because Taz did have his first foster mom who nurtured him and loved him and took care of him, I think he fared better than others. The first twelve months of life are so important. I hate to sound so drastic but the first year could possibly be the difference between becoming a sociopath and being able to heal and have significant relationships in life.

Two stories in the book I read are perfect examples of this.

One 16 year old boy was in maximum security prison for violently murdering and raping two young girls. He came from a loving hardworking family with high morals. None of his siblings had any criminal history. This boy was deemed to be a sociopath, meaning he had no feelings for anyone but himself and couldn't empathize or connect with other people, and ultimately would spend his life in prison.

A 6 year old boy was found living in a cage with the dogs his caretaker had a business breeding. His basic needs were met for food, clothing, and water but his caretaker (an elderly man with no experience with children) treated him like the dogs he bred. The boy could not walk or talk. But once he was put in a home with a loving patient family, he very quickly began catching up developmentally to his peers and was able to have lasting relationships with others.

What was the difference?

Well, the first boy, the sociopath, after investigating his background had found his mother (who had a low IQ) had become overwhelmed caring for two children (he had an older brother) and left the infant home alone most of the day while taking the older son out for long walks and errands. His father worked long hours and also did not interact with the infant much. He had little to no human interaction the first year of life. Once he got older and they found he was delayed and acting out they got him specialized services and he went to special schools. His parents were very loving towards him and tried to help him the best way they could, but it was too late. The damage was already done.

The boy raised by dogs, however, had been nurtured, cared-for, and loved by the dog breeder's wife for the first year of his life before she died. After she died was when the neglect had started. But he was already able to associate human contact with pleasure by that point.

Two extreme stories of course, but you get the idea.

Taz had major trauma early in life that contributes some what to his current (and probably lasting) issues. But his infant experience of nurturing essentially saved him from even more devastating problems than Bipolar Disorder. And for that, I'm thankful.



Trauma vs. mental illness:

- Taz is able to have significant deep relationships and attachments (Nana, Grampa, daycare teachers, friends, etc)

- Taz's behaviors are mostly dictated by his mood, not by fear or by the need to control a situation. He is fearful, but that doesn't account for his behavior. He is afraid of many things but he tells us and we reassure him, like a typical child.

- Taz is not a sociopath. He is compassionate and can empathize with others (when his bipolar mask isn't in place)

- Taz's behaviors are not triggered by situations that relate to his trauma (at least not most of the time) as the doctor said. He is in an internal battle, it's often within himself. That's why one day he can handle getting himself dress, and the next he can't. One day the battle is calm, the next day it's raging.

- Taz is not manipulative

- Taz allows himself to be loved and can love others





Now if I could only make those know-it-all professionals see.

Home. For Now

Taz is home today.

He slept like crap. He kept waking up wanting to go in our bed. Or afraid he was going to pee in his bed, even though he wears a pull-up. Dh wonders what nighttime was like at the hospital.

Taz is pretty much back to where we left off. He's calmer but mostly because he's tired. The meds are making him really drowsy and groggy. Dr. F assures me that will wear off within the week.

He's not manic like he was when we brought him to the hospital more than a week ago. But he's irritable.

And still aggressive.

Perhaps not as often. But when things don't go his way, he is still throwing chairs at me, scratching and biting.

I don't know what I was hoping for. A miracle? A cure? I know there isn't one but I've seen Taz do really well on certain medications. Until they wear off.

Now I'm wondering if there is no drug that can halt his aggression. And since he can't predict consequences, where does that leave us?

Maybe we need to be really creative about management strategies. We need to make him a calm down room where he can't destroy anything. Maybe we need more than one person in the house all the time.

I don't know.

If the tiredness doesn't stop within a few days we'll have to take him off the Intuniv. Maybe that will help with the crankiness. I don't know what to think anymore. I don't know what to expect. I don't know who to believe. I don't know what to do.

Like our outpatient psychiatrist said over the phone yesterday.

"Taz is a kid with a lot of problems."

ADHD with a Little PTSD and GAD on the Side

I need to change the name of my blog from "Battling Bipolar" to "Battling Acronym Disorders".

I was pissed today. Really pissed.

I had a phone conversation with Taz's psychiatrist at the hospital, who is also the director of the hospital program. Just like I said in my last post, I told him that I could get any doctor to prescribe ADHD meds, no one is disputing he has that, but what we came for was a mood stabilizer or some other medication used to treat bipolar. And that I wasn't happy with the Intuniv results, Taz has still been aggressive and irritable at our visits.

And then it all came to a head. Dr. F started going on and on about Taz not having bipolar and that he was getting older and learning how to push buttons and test limits. Again, I did not put my child in a psychiatric hospital because of ADHD and button pushing!

I said that if the hospital is supposed to be teaching me behavior management they are doing a pretty crappy job because so far, no one does a damn thing when Taz attacks me during visits. He said they were still observing the "interactions he has with his mom and dad" and the behavioral stuff will start soon.

I said, what? Time-out? Do you think we haven't thought of that in the last two years!? I'm not an idiot! (I probably shouldn't have said that part, I'm sure it didn't help my case for not being a crazy parent)

Then Dr. F proceeded to tell me that he asked Taz why he hits us and Taz said because we're dumb. Then Dr. F asked me where he would get that language from?

Umm....let's see. Daycare, his older cousin, TV, friends in the neighborhood, everywhere! We certainly don't talk that way so it's not from us. I'm still not quite sure where he was going with that.

I reiterated again that Taz doesn't have a behavior problem (are you getting tired of hearing this yet?), that he has a disorder that's symptoms are behaviors. We have done everything imaginable to change Taz's behavior... and it just doesn't work.

Taz is not able to connect an action to a consequence.

We've had this reiterated by professionals over and over. Then Dr. F asked me what usually happens when he gets aggressive and out of control.

This is what I explained. When Taz gets aggressive it's hardly ever just a smack here or there. It's usually a meltdown that includes destruction, aggression, and complete loss of control. It becomes all about calming him down. We can't use logic or reason because he's not "there" enough to process that. The only thing that works to calm him down is to remove him from people and things that he can destroy.

I described how in our old house we cleared out a room for him where he could sit on a bean bag chair and calm down but couldn't hurt people or break things. And it worked. He would calm down then we could process through what happened.

Now. Here's the catch.

We could put him in that room 20 times in one day and process through the event 20 times. But the next day, the next week, the next month, the next year, he will make those same 20 mistakes over again.

He doesn't change. He is not learning.

That's when the conversation changed. He agreed, over the phone still, to start Invega (a new form of Risperdal that is extended release). He started it today.


So...about an hour later I had an appointment at the hospital where the therapist was going to facilitate an interaction between Chica and Taz. Taz was sleeping, which apparently is happening a lot during the day because of the meds, but should wear off after a while, so the therapist listened to my concerns then brought in Dr. F.

Now. Here's the weird part. For some reason, Dr. F did a complete 180.

Is it because of something I said? Is it because I so eloquently stated my case which was so intelligently thought-out? Let's just go with yes.

Dr. F said that Taz may have bipolar and is likely to end up with some mood disorder but he can't diagnose that now at his age. He does not believe Taz's behaviors are planned or controlled and they are not a result of anything we are or are not doing. Thank you!

So. Bottom line from Dr. F: Taz has ADHD. He has developmental delays. And the rest of the issues we're seeing are due to early childhood trauma and anxiety.

Dr. F explained that the first 12 months of life are imperative for emotional development. If Taz endured an enormous amount of stress as an infant/toddler, which he did, the cortisol (stress hormone) levels in his body were probably elevated enough to cause damage to the brain. It causes people to get stuck in a hyper-vigilant state where they are constantly on guard for danger.

Basically, when Taz is frustrated, feeling challenged or threatened, he immediately loses higher brain functioning (logic and reason) and only uses his lower brain (fight or flight). Which is why sometimes it seems as if Taz is literally fighting for his life.

Dr. F felt like the on/off switch Taz has for meltdowns is more consistent of a child coming from a traumatic background than a child with Bipolar. What we see as depression he thinks is really anxiety. The violent thoughts and ideas he also says is common for people with PTSD.

This is something I can buy into. At least for now. Do I think Taz has some mood issue that will come to a head at some point in his life? Absolutely. Do I think he has bipolar now? Yes, I still do. But since we can't seem to get a mood stabilizer going to find out, I'm willing to try the Invega and Intuniv instead.


Now for the big news!

Taz is coming home tomorrow!!!

I told them I was taking him home. The psychiatrist would have liked to keep him one or two more days but agreed to let him get his vitals checked outpatient so he could come home. I feel like we're at the limit for keeping our attachment secure. He needs to come home now. He's asking more consistently about going home and tonight he asked me to stay overnight with him. He's increasingly more anxious when I visit. And he says he doesn't like the hospital. He's definitely ready.

And of course, so am I.

I think I have a greater appreciation for what Taz brings to my life. Even when it's hectic and crazy and aggravating.... I still need him. I need to be able to hug him before bed and know that I'll see him first thing in the morning.

I just love him so much.



So what should I rename my blog? Raising Complicated Kids is already taken. I'm kind of mad she thought of it before me :)

The Blame Game

The hospital Taz is in boasts a family centered approach to treatment. So far most of the nurses and staff have a guilty until proven innocent mindset about the parents. And since Taz has yet to exhibit any behavioral problems, the thought is that we, his parents, are to blame.

But what they don't seem to understand is that Taz is a survivor. His early childhood trauma has created this little being inside him that says to survive at all costs. That means until he knows he is safe and will get his needs met no matter what he does, he will comply. Until we get there. Then that big ball of pent up emotion comes to the surface and it can very much look like we are the ones with the problem.

But we're not. Obviously.

And I'm tired of being treated as if I am.

So tired that I am heading into the hospital tomorrow morning to give the therapist a piece of my mind. They need to tell the staff to back off. They need to know that there are sick kids in this world and that most of the time, it's no one's fault.

I asked one of the staff during my visit a couple nights ago why many of the other parents don't visit every day. He said that a lot of times the kids are there because of relationship strains with the parents. He said, "I don't want to say it's their fault or anything...but...the parents need a break and the kids need to reflect."

Reflect? This isn't meditation camp. Kids need their parents. Especially young ones.

This was after he told me that Taz was "showing off" because I was there because he's never seen him like that. Great. You've known my kid for 4 days and suddenly you know what's normal for him and what's not?

Another nurse told me that Taz seems calmer since starting the Intuniv. Great, he's calmer. But we're not here for calmer. We're here to stabilize his disorder. Disorder. Not a discipline problem. A real disorder.

I told her that I don't think it's enough because he is still aggressive and unstable on our visits. She said that because they haven't seen any of that it must be a behavior problem and that he just needs a consistent behavior program.

Sigh.

I told her I needed to speak with the psychiatrist about my concerns with the medication and she said that kids Taz's age can't be diagnosed with anything because it's too hard to tell how much of the hyperactivity is just because he's four and how much is ADHD.

Excuse me? Did I just hear you right? You think I put my son in a psychiatric hospital for being four? Or because he's hyper?

And enough of this ADHD crap! They are obviously not reading his file because it explains in black and white that Taz is in the hospital because he has attacked us with a screwdriver (as well as other dangerous objects) and is extremely aggressive with his younger sister. It also says his diagnosis is Bipolar, but apparently everyone just ignores that. And that he has severe mood swings and can't cope with his strong emotions.

They must have also missed the part where he was born addicted to cocaine and methadone. He is a recipe for disaster!

The bottom line is that Taz needs a mood stabilizer. Probably an anti-psychotic as well. And then maybe Intuniv. But I can't deal with the hyperactivity without dealing with the moods first. That is what dictates his behavior. His moods are what dictate his life (and ours).


Monday morning I'm going in with my game face on. I'm going to get an answer about starting a mood stabilizer and I'm going to complain about the implication that I have something to do with Taz's behavior. If they don't listen, we're leaving. I'm not going to waste our time and continue to traumatize my son. They are either going to do what we came for or it's not worth staying.

To Hell With Everyone! I Want My Kid Back!

First of all. Visiting my child one hour a day is simply not enough. I called the therapist this morning and told her I was going to visit in the morning as well as in the evening (which are the usual visiting hours). I can't be away from my 4 yr old all day like that. She agreed.

I miss him. I miss everything about him, even his anger. I just want to go home. Half my family is at my mom's (me and Chica because it's closer to the hospital), my son is in a hospital, and my husband is at our house more than an hour away. I want my normal life back. Even the chaotic crazy version of it. I want to be the one getting Taz up in the morning. Getting him dressed. I never thought I would say that because that's one of the times he's so difficult but I don't care. I want to feed him meals. I want to give him a bath and brush his teeth and watch movies with him and have him in my bed first thing in the morning being goofy.

I don't want an hour with him each day in a noisy hospital with no privacy. It feels like prison.

I hate this. It's torture. I hate everything about it. The only reason I'm not pulling him from the hospital and taking him home right now is because everyone is convincing me it's in Taz's best interest to be there. I don't believe it. I think he needs his family. I think he needs his mom putting him to bed and waking him up every morning. Not some stranger.

I've been crying off and on all day, especially at night. I've resolved myself to go pick Taz up and bring him home half a dozen times now but Dh convinces me otherwise.

I just want my life back. My completely abnormal, chaotic, frustrating, sometimes dangerous life back. To hell with everyone else. To hell with medication. To hell with behavior programs. To hell with doctors and therapists.

I want my kids. I want them with me.





P.S. I posted twice today so read the post below to catch up on medication issues and current frustrations with doctors.

And Hope Comes Screeching to a Halt

Everything was looking up. The treatment plan, the doctors, the behavioral program, hope was the sweet smell filling the air I breathed (poetic right?). Then yesterday it came screeching to a halt.

It started when the psychiatrist intern (we'll call him Dr. Dork cause, well, he is one) called to say he spoke with our outpatient psych Dr. S. He agreed to start the Intuniv (and ADHD drug used that works well for kids born addicted to drugs as it inhibits impulse) so they started a small dose yesterday. He happened to slip into the conversation that Dr. S wasn't confident in the bipolar diagnosis, which is news to me because he never mentioned that. He has always referred to Taz as bipolar.

Why do doctors do that to us? It's so confusing.

Anyway, I said, "you're not planning to change his diagnosis right?" To which Dr. Dork replied, "nothing has been changed as of yet." Which is a round about way of saying "we're considering changing it". I felt a little suspicious so I went to the wonderful and knowledgeable world wide web and looked up everything I could find on Intuniv, especially on how it relates to bipolar disorder.

Well, imagine my surprise when most reports say it works to control ADHD symptoms when used in adjunction with mood stabilizers and when the bipolar mood swings are under control. Many kids get irritable or depressed after several weeks of taking it. So, in a nervous panic (because I thought we were going to the hospital for bipolar meds or a mood stabilizer) I called back Dr. Dork and voiced my concerns. He said they are trying the Intuniv because it is used to treat the types of symptoms Taz is showing. I said I would go along with it but I'm concerned we'll end up back there when it wears off and what he really needs is a mood stabilizer.

Then Dr. Dork asked why I thought he was bipolar (alarm bells started going off in my head). I said,

well, if you give me a list of symptoms of bipolar, Taz has all of them. And I didn't just put my kid in a psychiatric hospital for ADHD (cause I know that's where they're going). Last I knew kids with ADHD don't threaten to cut their parents fingers off, blow up the house, shoot their sister to make her dead, and threaten to cut all our heads off. They don't cry for long periods of time for no reason. They don't throw themselves in front of traffic then laugh about almost getting hit my a car.

He said that yes, there does appear to be more going on than ADHD but that many kids have comorbid disorders.

So...basically....like all professionals, they don't want to use the big bad "B" word. They are going to tiptoe around it labeling every other condition they can other than bipolar. He's ADHD, ODD, GAD, Explosive Disorder...oh, and he also has mood swings. But not bipolar. No, of course not. We don't want to put that label on a kid. Just another five hundred labels instead.

Seriously, does this make sense to anyone else?

But Dr. Dork did make sure to tell me he's not saying that Taz doesn't have bipolar. They are just thinking about it very carefully.

Whatever.

Then he stressed a behavior management program at home and that Taz isn't have any behavior problems at the hospital. Yeah, well great. It's been 3 days!

I told him very firmly that I didn't just put my kid in a hospital to have him labeled ADHD and then tell me it's my parenting. I have done everything every professional has told me to do with him. I have a background in special ed. We are smart resourceful people. We have already fought with professionals who've told us it was our fault. I'm not playing the blame game anymore and I will take him home if that's what's going to happen.

I can get any doctor to prescribe an ADHD medication. One look at Taz and no one would deny ADHD.

Well I don't think Dr. Dork has ever dealt with a parent like me. He backed right up and assured me that's not what's going on and they just want to try Intuniv because we haven't tried anything like that yet and it's the simplest to try. If it doesn't work they will consider other options, maybe mood stabilizers.

Which brings me to my next issue. Behavior management.

Sigh.

Next post I'll continue my rant.




Oh, and I miss my son immensely. I have had multiple emotional breakdowns these last couple days. More on that next post too.

Round Two: Hope is Still in the Lead

My mom and I visited Taz at the hospital last night. He was bouncing off the walls, which is generally how he's been at home, but usually he's more subdued in new places. But no, he was talking a mile a minute, dancing around, barely able to focus on anything. He's definitely still manic.

But he was happy to see us. He even gave Chica a big hug and kiss. He wanted us to stay in his room. He didn't want to show us around or tell us what he did that day. He just wanted us to watch him play as he danced around and blabbered away. Even my mom noticed a huge difference from how he usually is. She didn't believe me at first that he needed to be in the hospital but on the way home she told that now she does because Taz is just not "there" right now.

Pretty quickly he started having trouble with Chica. I ended up getting a nurse to come in and help us because that's one of the main issues at home and I wanted to be consistent with whatever behavior program they're using with him. When the nurse came in she brought the psychiatrist assigned to Taz along. The nurse asked Taz what was going on. He said he wanted to crash us with a big monster truck. Then he said very quickly that he wanted to go home. It broke my heart. I couldn't respond right away because I was afraid I'd start crying.

Then the psychiatrist (Dr. F) pulled me aside while my mom played with Taz. Dr. F told me he had a chance to do some observation and testing with Taz. He said he definitely can see some pretty big delays. He had to do the testing in short 2 minutes bursts because of his attention span. He didn't dispute the bipolar diagnosis like I thought he would. He did say that we probably needed a strong behavioral program at home when Taz is released (I know that's a bad word but I can't think of a better one).

Dr. F sounded very experienced and knowledgeable about treating kids with mental illness, especially kids with similar issues to Taz. I asked him if he sees a lot of kids like him. He said, yes, a lot. He said that Taz has a lot of things working against him; born addicted to drugs, developmental delays, early childhood trauma, and genetics. But that he has things working for him too; a stable home environment and good advocates getting him the best treatment we can. That's the first time a professional has ever acknowledged the work we do. I like him already :)

Dr. F wants to try Intuniv, which I believe is an ADHD drug. I'm sure Taz qualifies for that diagnosis but Dr. F thinks he has the bipolar as well. The reason he wants to try it is because they've found that with kids born addicted to drugs, the non-stimulant ADHD medications inhibit the fight or flight response that's the main driving force of the behavior. When he said that I said, "yes, let's have that please!" Because Dh and I noticed that Taz seems to be almost in constant flight or flight mode.

Dr. F also mentioned trying a new form of Risperdal that they've found doesn't wear off after a few months like it has been for a lot of people. He also mentioned the possibility of a mood stabilizer. It all depends on how the Intuniv works.

He told me he sees the kids every day to monitor how the medication is working. That's the good thing about being inpatient is they can raise the dose much quicker. So while we're adjusting the meds Chica is safe from him, and hopefully after 10-14 days Taz can come home. While I know there's no miracle cure, I think the combination of new medication, our in-home program (which is going to start right away), and the structure of school starting in the fall, will make a huge difference. I asked Dr. F if he felt like it was good for Taz to be there and if he felt it would harm him. He said it was good. I'm worried about attachment but I'll get into that in another post.

So...hope is still out there my friends.




Oh, and after I went back to the visit with Taz he had calmed down a bit and agreed to take us on a tour, then gave big hugs as we said goodbye.

What Not to Say

So I totally stole this post. Read it if you haven't already. It's not only forcefully honest, it's also pretty funny. I couldn't have written it better myself.

I have an update from the hospital I'll write out tonight as well as my ER stories. Stick with me.

Hope?

We checked Taz into a wonderful inpatient hospital program this afternoon (after 24 hours in the Emergency Room). It seems like a great place. The staff was warm and friendly. They are bending the rules a bit by letting us visit extra and putting a different behavioral system in place for him since he doesn't understand points and levels.

Taz has his own room, which I prefer because he's so little. I don't ever want him to be a victim of another sick child (although there's plenty of supervision, I'm just paranoid!). There's a wonderful recreation/play room with video games, movies, toys, and a sensory table with sand (Taz will love that!). They go outside every day. The wing is bright and cheery.

What won me over was the staff. They appeared happy and to really enjoy the kids, not like other places where everyone looks like they hate their job. The kids were all happy (in the moment, I know they're there for a reason). There weren't any big violent kids (also a little paranoia of mine) because they only accept kids to age 13 since they specialize more with the younger ages. There were a few kids with autism and neurological disorders so I'm glad the hospital is used to that because that's sort of part of Taz's bag. He's not straight behavioral/emotional. He has neuro stuff going on too. They seemed to understand that.

I think that we'll be able to consult with a neurologist while we're there too, which is something we've been pushing for. Unfortunately there's a shortage of children's neuros in my state so the ones we have aren't seeing kids for developmental issues, only for seizures. The wait list is 6-12 months long! I think at this hospital we'll at least get a consult while he's there!

The Emergency Room, however, was a whole different experience. We went back to the same hospital as Friday. Now this is a children's hospital mind you. Like, a very well-known, highly recommended children's hospital. We've been here a thousand times for medical issues and have been treated wonderfully. The psych section (or behavioral health as they call it) of the ER felt like a whole different place. I just wanted to scream these kids are sick, they're not criminals!

Tomorrow I'll write out some pretty depressing stories about how "behavioral health" patients are treated in the ER. It made me worried for Taz's future. But if any of those kids were mine, you can be sure I would have told off a few nurses, EMT's, and security guards (they were the worst!). I'll write tomorrow. It was surely an interesting night.

Right now I'm feeling satisfied that we found him a good program. But I have to admit I've cried almost every tear my body could possibly produce today. I held it together in front of every professional and in front of Taz. But I fell apart in between, mostly in the car. When we left the unit after getting Taz settled in I lost it in the elevator. And I cried through the hallways of the hospital and out to the car. Poor Chica was so concerned she kept patting my face and kissing me. Everyone I walked by must have thought someone died.




I remember another mother of a child with bipolar wrote she felt empty after her child was hospitalized. I totally agree with that feeling. Empty. Like part of me is missing. My baby is away from me. He's safe and well taken care of, but still....away. I just want to scoop him up and bring him home. But I want him to be well. More than anything to be able to healthy and functioning.

I know the little boy that exists inside him. The happy-go-lucky, funny, charismatic, compassionate, sweet little guy that is buried under all that rage and confusion and fear. I want the little boy I know and love back. That's why I'm risking the hospitalization. I know it's not ideal for a 4 yr old. But I'm risking it because I think it's better for him to get the short term, intense "fix" (as in medication change) under the safety of professionals then hang around in this terrible state of limbo.

I have hope. And I have pain. Maybe hope will win. Maybe it will all be worth it in the end.

Brief Update from DH

DH guest blogging for all of the followers:

Things are no better now than Saturdays post below. We took Taz back to the ER this afternoon. They weren't able to do an initial eval until this evening. Taz is spending the night in an exam room in the ER waiting for a bed to open up in an inpatient facility in the AM. Even if it does, 2 of the 3 options involve J staying at her Mom's house an hour + away with Chica for the duration of the hospital stay. Consequently, we're hoping for a good outcome in the AM. I'm sure J will be back in a few days with a new post. In the meantime, we continue to lay siege on the Bipolar Battlefield.