Where do we go from here?

This is a question I run into frequently... either I'm asking it, or someone is asking it of me.

When Beth (and later on, Peter) was diagnosed with an autism spectrum disorder there were plenty of places to go. There's the Autism Resource Center, there are social groups, there are activities, and the online communities for parents of autistic (or children with autism*) children are loud, active, and engaging. They are warm and inviting as long as you manage to stay away from the drama about semantics (autistic vs. with autism).

Truthfully we never really fit there though. I never went to visit the Autism Resource Center (no, really.) I didn't see the point since a lot of Beth's behaviors have never actually fit autism. I didn't want to go somewhere else where we were outcasts. If I felt like being an outcast I could just take her to the grocery store or to a family function. I didn't need to go all the way to the ARC for that.  Years down the road when Peter was diagnosed I figured I had survived this long without it why bother now. You know, my attitude kinda sucked.

When Beth was diagnosed with child onset schizophrenia last year I started seeking out resources for parents of children with childhood mental illness (or parents of mentally ill children*) and discovered that the area I live in has nothing. It straight out doesn't exist for us here. That was a painful realization. There was no one to reach out to on a personal level. Sure, we have our therapists and services but that is almost never the same as coming across another parent who can tell you they've been there and have survived it. I managed to find a few online resources mainly geared toward medication and was ostracized and bashed for refusing to medicate my girl. I did finally find a support group online that is very warm and accepting and parents come from all walks of life and all sides of the great medication debate, but there's still nothing I can find locally.

Earlier this year I took a Human Services class and one of our projects was to come up with a community resource guide. My group handled resources for children. I had a few saved and the others in my group struggled to come up with anything different. Out of curiosity I started looking in other parts of the state  and discovered that we are flanked on both sides by fairly decent services. The problem is that travel time makes those services, support groups, classes, training, and events inconvenient for our families here.

I was chatting with a friend last week who lives closer to Boston and she was discussing services in her area. We were talking about the gross lack of parental support in this area and she was genuinely confused and concerned about the parents here who are left with no support. She had mentioned taking a class called NAMI Basics. I browsed NAMI's website and discovered that I can take this class in the next town over! I'm so excited about this! I've already emailed the instructor who said she was going to forward me the application next week. Its so exciting to see NAMI active in this area!

I also have contacted Family Ties to see about volunteering with their Parent Partner Program. I am waiting on a training to become available with them. They have one tomorrow but it runs at the same time as Beth's concert and I absolutely won't miss that concert so I have to wait for the next one. Hopefully I can start finding ways to bring more services to this area!

RAD

So now we all know the backstory.. the history. What exactly was the point of dragging all of that out in the open? The point was so that I could get from there to here....

RAD.

Reactive Attachment Disorder. It still leaves a bitter taste in my mouth. RAD (http://www.attachmentandintegrationmethods.com/disorders/rad/) frequently affects children who were adopted or in foster care. Nope, I don't have any of those, but I do have a child diagnosed with RAD.

Symptoms:

Speech: Constant chatter; nonsense questions, abnormal speech patterns Eating: hordes, gorges, refuses to eat, eats strange things, hides food Lying: Lying for no apparent reason; Lying when the truth is obvious; false allegations of abuse Stealing: Sneaks things w/o permission that could have been obtained by asking; stealing from family, school, others; theft of items with no apparent value or use Affection: Indiscriminate affection, often to strangers; demanding or clingy, often at inappropriate times; not affectionate on parent’s terms Regulation: Tantrums and rages may go on for hours; something apparently minor may provoke World War III; difficulties tend to escalate into major events; cannot self-regulate Control, Triangulation, and Manipulation: Ultimate need for control; manipulative; need for structure and schedules; often trinagulates adults; Superficially charming and engaging, especially with outsiders Friends: Poor peer relationships; shallow relationships; relationships don’t last; friends frequently don’t meet parents’ approval or are a bad influence Problems making eye contact (but may make eye contact when angry or lying) Oppositional: Argumentative, often over apparently insignificant things; differences escalate; non-compliant with family rules Destructive to property of others, especially those most closely related; may be aggressive or violent, especially during rages Self-destructive: Behaviors may be risky or directly self-harming Impulsivity: Impulsive, does not appear able to learn from consequences or mistakes; does not appear to understand cause and effect Hygiene: May refuse to wash, shower, groom hair, use deodorant Attitude of entitlement and self-importance Developmental / Learning delays Pain Tolerance: May have a high threshold for big hurts, but pitch a fit over minor ones Nit-picky over details, but ignores the main point May appear to lack empathy and a conscience Hyper vigilant Fascination with fire and blood and gore Cruelty to animals Parents appear hostile and angry

I know, its a lot to read. But if you read the last post and then come here you're going to see that a LOT describe Jolie. If you had the pleasure of knowing her a few years ago you will be literally stunned by how many describe Jolie. Even today, quite a few still affect her.

But how? I never left her alone. Aside from the relatives in the house I never used a babysitter. I was with her every single night unless I was in the hospital. I was devoted to my children. 

But I wasn't there emotionally. If you remember I told you that I checked out when she was barely a year old. I reached the threshold of what I could handle and I emotionally checked out. 

Really, I don't think anything hurts as bad as knowing that I caused this. 

I didn't know anything about RAD until about 3 months ago. We tried every form of therapy and parenting we could find with Jolie. She didn't care at all about punishments, sticker charts, marble jars, rules, or other people's emotions. Hell, this child put my kitten in the dryer and turned it on at the age of 3.5. (Kitty lived... barely). It wasn't until I switched to Collaborative Problem Solving that we started making any headway. The meltdowns decreased and she started engaging. Her teacher was reporting problems in school with emotional regulation and she worked of not engaging in manipulation attempts (yes, a child CAN be manipulative) but she had no idea what we were facing either. We slowly started to rule things out but our focus was still Beth. Beth required a HUGE amount of focus and attention. Jolie could not get along with any of her peers. It was baffling. I had Jolie evaluated by the same psychologist who ultimately decided on schizophrenia for Beth and she said Jolie is incredibly intelligent and is unfortunately suffering from having a significantly mentally ill sister and a moderately severe autistic brother. I didn't buy into that at all but was able to see that Jolie had pulled the wool over this doctor's eyes.

(I apologize now if I'm out of order or scattered. This is much harder to write than I anticipated it would be... still, it needs to be done.)

About 3 months ago her therapist told me she believes Jolie has RAD. I googled it.. and immediately texted her with my intense protestations. This can't be possible, can it? I didn't abuse her... no one ever abused her. She wasn't adopted or in foster care. I would never hurt her... how??

At the time our therapist let me run through every reason why this couldn't be possible. She assured me that she didn't believe for a second that I had abused any of my children. She knew they had never been abused, that I had protected them as fiercely as I knew how from any danger (too fiercely, in fact). She knew they had never gone with aunts or uncles, knew no cousins, had never been exposed to anything I didn't know about. And then she stopped talking about it. She would answer questions when I asked but she didn't engage in conversation. This woman, as irritating as it is, understands how to let me get to where I need to be. 

I continued with my psychology classes for my Human Services degree. I read about RAD, I knew that was the most accurate description of Jolie's behavior I had ever seen but I was still very stuck about the "caused by abuse/neglect" part.

I talked, a LOT, with besties B and H. They understand RAD (or are learning with me). I bounced ideas off of other therapists and licensed counselors. 

And here comes my realization.

I caused her RAD by being emotionally unavailable. My focus was on Beth because that's where it needed to be. If I had it to do over, I could do it differently because I know better now. I'm educated and experienced now. I understand how to provide for one while still tending to the urgent needs of the others. I was not emotionally unavailable enough for DCF to decide I was a danger (remember, they knew me well  by that point) but I wasn't prepared and my cries for help went unanswered.  In all fairness I don't think the help was there. 

And here's my point. There are a ton of us. Mothers and fathers raising multiple children with mental/physical/psychological challenges. When one of our children gets diagnosed RAD we end up being labeled bad parents. The RAD support groups insist that our children are misdiagnosed because they are our biological children. The other support groups don't want us because they don't know anything about RAD and those children are "bad". Plus, RAD is caused by neglect, remember? If you're the biological parent then you're the "abuser", remember? 

Little secret for you... those of us who have children with multiple diagnoses or complicated ones... we still need our kids to belong. We need to belong. We need to, especially when we don't think so. We need to especially when we're most afraid to. We need family, friends, peers, even just a smile. And if you think I should speak for myself, then you need to belong too. 

Jolie is doing significantly better. There are environments she doesn't do well in (karate, very large groups, etc). She doesn't get personal space or personal boundaries and if she's allowed to she will be highly inappropriate. Since we moved to the Collaborative Problem Solving and natural consequences instead of the traditional time outs and punishments she's finally making progress. With natural consequences she can't find a way to blame it on anything but her own actions. I am working on personal responsibility and accountability with her. It doesn't always work out very well, but we will keep trying. She still has classic sociopathic behaviors, chronic lying, and blatant manipulation techniques but they are less frequent right now. While we're in this down time cycle I'm studying RAD, following a phenomenal YouTube blogger who deals with this in her own children and has wonderful parenting techniques, and picking the brains of a few professionals. The changes I made in parenting have helped move Xander from an obviously developing RAD case to a more typical 3 year old with a few sensory issues. 

So.

Yes, my daughter has RAD. Yes, I'm her biological parent and she has never been to foster care. There are more like me. Imagine what we could accomplish if we banded together and helped each other through this. This is why I'm writing (I know I'm not very good at it lol) and this is what I will do with my life.

If you need help, if you need me, if you need anything.... I will help you or find you help. Try me.

Full disclosure...

Alright, time to get deep and painful.... and come out somewhat coherent. I am blessed to know most of my readers and that's kind of comforting as this post demands to be written, needs to be written, and must now finally be written.

So in the last post I rambled. Continuing on.....

When Beth was approximately 6 months old I discovered I was pregnant with Jolie. Literally days after we moved back here from Texas. The timing could not have possibly been worse. To say I was horrified was a serious understatement. We had just moved almost 3,000 miles with Beth who was still an infant. We had a little money saved but no job yet. I cried every single day... until I hit about 29 weeks and landed in the hospital for pre-term labor. And then I begged and pleaded with whatever universal power would listen to save my baby. True hypocrisy, I know. Labor did stop and Jolie hung on for 10 more weeks... life was good.

Only something was wrong. As I suffered through bedrest and 3 OB appointments a week Beth started regressing. She lost all her words, she refused to play with me, and holding her was likely to get a person hit, bit, and kicked. Initially I believed the regression was coming from my pregnancy. After spending the day with extended family, I learned that my aunt, who is a teacher, believed something was very wrong.

Fast forwarding again.... Jolie was born and not long after Beth gets diagnosed autistic. Early Intervention came in and prescribed 25 hours a week of one on one therapy. Two sessions a day. I was working 50+ hours a week, husband was there but exhausted, Jolie was confined to a playpen during the therapy because they asked that she not be a distraction. Jolie had a MASSIVE problem with... well.... anyone who wasn't me. She tolerated her daddy because she had to when I was working. Aside from that she screamed non-stop unless she was right up on top of me. I couldn't leave her sight. Beth developed a nasty habit of fecal smearing. Yes, its not pretty but there's a very real reason I'm including this. Early Intervention told me they had NO idea how to make this stop, no clue why she would be doing it, but I had better figure it out. Jolie's social anxiety went from bad to worse as all of my attention was on Beth and her behaviors.

Early Intervention decided that what I needed was DCF and we were reported for neglecting Jolie's development around Jolie's first birthday. That day I truly wanted to give up. I told no one... I was horribly embarrassed. DCF came in and referred Jolie to Early Intervention for developmental testing. Imagine my surprise when Jolie scored ahead of her age group. Did you read that? She scored ahead of her age group. But it was EI that said I was neglecting her development. DCF decided we could benefit from free daycare. They had nothing else. They did, however, remind me on a regular basis that they could take my children if I didn't fix the fecal smearing, the behaviors, and Jolie's anxiety. They asked me to get my own counselor and I did but she was so stunned by my situation that she admitted she couldn't help.

That, folks, was the help offered to me. Around the age of 3, as Beth was aging out of EI, hallucinations started to appear. EI and the pediatrician assured me it was pretend play. Only EI's evals kept coming back saying she lacked pretend play skills. The one psychiatric facility that would see a child that young (pedi's referral) wanted to start Beth on psych meds. I knew nothing of the great med debate but I knew that it was going to be over my cold dead body that someone gave my 3 year old psych meds without a diagnosis.

Can you guess where I was emotionally by this point? My 3-4 year old had no concept of reality, had hours long meltdowns screaming about voices trying to kill her, self injured like nothing I had ever seen in a toddler,  wandered off any chance she got and at one point jumped off my dryer with the cord from the window blinds wrapped around her neck. My 2-3 year old was violent, aggressive, destructive, mean, hateful and could only stand me for the most part. I was working full time overnights... and I had a newborn. I wasn't there emotionally. I checked out emotionally back when EI called DCF and reported me for neglect. I was emotionally stunted and felt numb and dead inside.

The years didn't get any kinder. No mental health provider would see Beth, my insurance didn't cover autism treatments, and Jolie threw fits that last 3-4 hours on a regular basis. UMass couldn't decide if Jolie was a 4 year old bipolar or ADHD but they said something was terribly wrong and they would help us find ongoing help... only the ongoing help never came. She grew to be violent, she destroyed everything she touched whether it was hers or not, she lied, she cheated, she stole, and she obeyed nothing. There was no amount of consistency or consequences that changed anything. And I got pregnant again. This time Mama was as gone as any one person could be possibly be. I was addicted to Xanax, losing my job, and Peter was starting to show signs of autism. Then my gall bladder went, the baby I was carrying was in danger, working wasn't possible, and I couldn't correctly parent my children. I wasn't able to emotionally or physically.The pediatrician kept telling me Peter couldn't be autistic... I was clearly seeing things because I had a child on the spectrum already. The pediatrician told me they were sure Beth was schizophrenic but none of the specialists would see her.

I changed pediatricians. (Oh, I quit the Xanax too... that wasn't easy and wouldn't have been possible without two people who refused to give up on me and to this day still haven't given up. I love you!) Changing pediatricians was the first step to real change (I didn't recognize it then, I see it now). The new pedi wasn't at all impressed with how much had been overlooked and started the eval process for Peter, the UMass mental health eval for Jolie, and real and true support for Beth.

Then I lost my job. I was given the option to resign instead of being fired but it was made clear I couldn't stay there. The cable company wasn't prepared to deal with my health issues and the time off I needed for the kids. This was step number two to a real change (Nope, still didn't recognize it). I had a TON of time now to dedicate to finding help, only there was none out there. I was finally starting to warm up to being a real parent (not a shell of a parent) but I wasn't all the way there yet.

We stumbled upon (with the help of the insurance agency who actually worked HARD at finding me help) a therapist who wasn't intimidated. She also wasn't fooled by feeble attempts to be an adult. She saw me for what I was.... a girl who got stuck developmentally during the teen years. I wasn't very cooperative for quite a while. I really didn't expect her to stick around. She earned my trust slowly and without judgement. She encouraged parental growth in small ways (mostly by making me think it was my idea...lol).

Waiting...

I've been waiting to post. I have a big huge idea for a post that I need to do, more for me than anything else. Really I write for me. When I do write.

This last week or two has been kinda rough for me. I'm 7 days away from a full month of not smoking and I ditched the horrible Chantix. I hit a point with the Chantix where dying was starting to sound like a beautiful and wonderful idea. That day I knew I had to stop. My girls are incredibly proud of me for not smoking anymore. I didn't realize how much THEY wanted me to quit. Their excitement over me putting down the cigarettes is reason enough to stick with it. I don't want to disappoint my kids if I can at all avoid it.

See, I haven't always been a great parent. I don't even know that I'm a great parent now. What I do know is that I have improved exponentially since the early years. In the early years I was overworked, overtired, and overwhelmed. My girls had their needs met. I worked long and hard hours, but emotionally I just wasn't invested or present. I couldn't be, I couldn't find time to be. I worked 45-60 hours a week and was lucky to get 4 hours of sleep a night. I wasn't taking care of myself physically, mentally, or even emotionally. I merely existed. I followed every step given to me by every therapist and doctor, faithfully, no questions asked. I truly believed I was being a great parent.

Fast forward a few years... it really wasn't until 2010 that I started to realize that I was doing things all wrong. That I really liked the Xanax prescription my doctor gave me a little too much (okay a LOT too much but that was a secret). I truly believe in many ways that Xander saved me. Saved all of us. I loved Xanax, but I loved Xander more. The night pregnancy test came back positive I stopped. I couldn't have done it without the support I was blessed with (and hours long phone calls) by two people who have never ever given up on me even in my worst moments. A lot more happened... we're just going to fast forward again.

So now we have this baby and we're desperately fighting to get services. Beth is over 3 so EI is out of the picture and there's NO ONE willing to help. She's too young for everywhere we try and the few people that will see her tell me they are pretty sure she's schizophrenic and they can't handle that in a 4 year old. Joelene is busy destroying everything she can get her hands on, Peter won't talk. Hell, he'll only scream. For hours. Every day. We start evals for Peter and my job says "Sorry, this isn't working out."

THAT is where I started to realize that I wasn't a good mother.

And this is a good place to stop because this is going to lead into where I'm headed next.

Busy...

Its been longer than I would have liked since my last post. I've had a ton of ideas but forgot them by the time I made it back here. Then I'd sit here and draw a blank about what I wanted to write. A little bit like I'm doing now. I had great ideas as I was falling asleep last night and now I just don't have much of anything, but I promised myself I'd write today.

With me, that means I'm going to ramble. When I ramble the posts go all over the place but truthfully those are the ones I find most helpful and insightful to myself later on and as much as I love the people who read what I write in the end I actually do it for myself mostly. 

What's on my mind right now? I'm seriously considering the Galaxy III over the iPhone 5. I know, sounds expensive but with my upgrade plus the trade in value of my current phone either way it won't be expensive at all. And I can't upgrade until July, but I like to have a well thought out plan before the actual event takes place. The problem is this plan is giving me a headache because I can't decide. Which is exactly why I start now and don't wait until July. 

Oddly enough, its behaviors like that one that have caught my attention lately. I need 6 months to choose how to use my cell phone upgrade. I need a month's notice before school meetings. I need two semesters of my classes planned out at a time. This isn't for scheduling reasons, this is merely for emotional preparedness. I want to be social and be involved in social situations but social situations exhaust and frustrate me. I don't even try family functions anymore. One of the best things that has happened to me is "S" because she doesn't really give me an option about when I'm attending birthday parties. 

Why bother mentioning this? Because three of my children are the exact same way and two of them have some type of ASD. Now I'm not trying to say I have an ASD. At this point in my life it wouldn't matter if I did or didn't, but what I'm trying to say is, I understand better than I ever realized I did how these situations feel for them. Its been pretty enlightening.

Ummm what else?

Oh! I solved the baffling pasta issue with Peter. Peter would eat some kinds of pasta but not others even when prepared exactly the same, or some types he'd eat prepared one way he wouldn't touch prepared another. It turns out that it has to be totally smooth elbow pasta. If there are ridges or it is otherwise shaped he can't stand the feel of it on his tongue. I have no idea why but I find this fascinating. Home made macaroni and cheese simply isn't a tolerable option. It has to be boxed macaroni and cheese but the texture is so different that I don't know why I didn't see this earlier.

Lucretia McEvil thinks she has an evil soul. Or she did yesterday. Yesterday she was pretty much a jerk. To everyone who didn't give her exactly what she wanted when she wanted it. Then ALL the sudden.... she wasn't a jerk anymore. She has this awesome "flip of a switch" thing going on. So far today she's been great, though so I will definitely give her that!

Pooh Bear came home from school deathly ill on Friday. You know, I may be prone to some exaggeration.  Anyways, she was sick at school and I had to go get her. She complained a lot about her head hurting and there's been a massive stomach bug going around so I figured she had the bug. What we ended up dealing with seemed more like a migraine than a bug but we actually saw some real catatonic episodes and absolute disorganized thinking which was a bit scary, I won't lie. There has been no more catatonic episodes since Friday night so I believe the catatonia was brought on by the vomiting but its something we are absolutely keeping an eye on.

And that covers everyone for now! 

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School vacation

Today is the 8th day of winter break... the kids will have been home for 8 days (counting weekends) when today ends. In past years this was meltdown time. Beth would cry and beg for school to start again. She'd promise to be good, in between sobs, as she begged to just be allowed to go back to school. It was frustrating and heartbreaking as we tried for the 400th time to explain to her that school would start again soon and how we would show her on the calendar where we had it marked out and were counting down the days.

That was before. That was when she loved school. She says she loves school now but this child is as disconnected from school as a kid can get. The school says this is age appropriate. I call bullshit. I don't believe we are looking at an age appropriate shift of attitude at all. When school is in session now her hallucinations are hard, harsh, violent, and mean. She sees zombies, dripping blood, and develops mysterious headaches and bathroom accidents at school. When school isn't in session she rarely mentions a hallucination (although I can see her reacting to external stimuli), has no unexplained health issues, and never has any time of bathroom accidents. When she does mention a hallucination its a harmless (as harmless as a hallucination can be) one, or a fun (to her) one. 

In just a few short weeks we are meeting again with the district to go over whether she has made effective progress this year. The school swears she has but her medical and therapeutic team (and myself) sees a marked regression. Its a tough spot and I pray we can all come together and put in place what will help her learn and grow appropriately. I know the schizophrenia is the sticking point here. The school is frustrated because they believe there's a miracle pill that will take away the hallucinations. I believe if we medicate we have a strong possibility of opening pandora's box... and I'm not ready to make things worse for her. She's alienated enough as it is and she knows it. Other children pick on her at school already because she's in a general ed classroom due to her highly advanced academic abilities. What happens if the medications cause tics or aggression? Add that to the high risk of physical side effects and I just can't do it just yet although we are reviewing her current hallucinations and symptoms with our pediatric psycho-pharmacologist after the holidays. We may not medicate but we do stay current with a prescriber in case that has to change quickly.

I did some serious looking around and there isn't a lot around here in terms of day programs for schizophrenic children. There are a ton of options for autism, not so much for schizophrenia. The few that are within an hour of us she's pretty much to young for. It really cuts down options as we try to decide how best to help her. To me its more important that she keep learning how to be positive, how to learn to identify the different between hallucination and reality (to the best of her ability) and other non chemical interventions. I know these will only work to an extent and only for so long before medications have to be introduced and that's fine. Ideally I'd like to make it through puberty before we start medicating so we know for sure what changes in her behavior can be attributed to hormones vs trying to narrow it down to hormones or medication and because most of these meds are less risky for teenagers.

So that's where we stand right now. Hopefully we will have some better answers for her in a few weeks.

2012

2012 has been an intense year. A year I haven't really kept much, if any, written log of.

I wanted to. I knew I should... but I held back everytime I thought about it. I came up with a thousand different reasons why I shouldn't share our story. I still have some of those concerns but mostly I think I was just afraid of opening up. Going forward I want to combat that fear. I want to be open and keep a journal of our experiences.

I follow some blogs with some regularity. Some of people I communicate with, others because their story touches me. Some of them are careful to hide their children's names, or their locations... others share their locations and names with no issues. I probably should take more care to mask my children's identities but the truth is that this is the internet. Anyone who really wants to find out who they are is going to. And why someone would want to go through all that work really baffles me. Most of my readers already know that anyways... ya know, all 10 of you...lol.

So 2012....

We danced with child onset schizophrenia, anxiety, emerging personality disorders, autism, and ADHD. We struggled through speech delays, sensory issues, cognitive delays, and ongoing destructive behaviors. We struggled with self harm, aggression, and pathological lies.

But.... that didn't define us. That was not all we did.

We crochet owl hats, other hats, scarves, santa hats, and many failed projects...

We went to the beach.

We had play dates and formed bonds with friends who understood that we weren't going to be "typical".

We started to form bonds with each other in meaningful ways (we still have our moments, but I'll take the good when I can get it.)

We learned to ride bikes.

We got kittens!!

We sang with the school chorus.

We did so much more, as a family and separately. I went back to school, took an advocacy class, learned a lot from a few of the best friends a girl could possibly ask for, and learned not to expect anything more from someone than they are capable of giving. I know who will be there for me no matter what time, day or night, that I need them. Now I just need to learn how to ask for that help when I need it.

So wrapping up 2012 I find myself encouraged. The road will be rocky and hard but there is so much left to learn and that is really exciting!

Processing

1 in 30,000. The chances of my child (and yours) having schizophrenia prior to puberty is 1 in 30,000 (according to ABC's 20/20).

I've read and heard other numbers quoted since the diagnosis. I don't actually know what the numbers are and I'm getting the impression that no one really does. I spent a good amount of time looking for information, resources, anything really... anything to help me understand and gain some perspective. I looked up pediatric schizophrenia, early onset schizophrenia, childhood schizophrenia, very early onset schizophrenia. (Side note: Why the hell have so many names for one condition??) I really didn't find much. What I did find, however, was this:

http://abc.go.com/watch/2020/SH559026/VD5547558/inside-the-world-of-childhood-schizophrenia

Now, being the type of person I am I begged a few people that know my girl very well to watch it. We all had the same reaction. Her mannerism, her speech patterns, her expressions, and even her wording sounded just like these girls. One of the besties pointed out that she even does the same hand wringing that was seen in the video. I didn't notice but apparently its obvious because her husband noticed it too when he saw the episode. I've been watching for that.

Up until I saw this, I think I was fairly disconnected from the diagnosis. I think I was still stuck in the "Okay call it what you want" mode. I was accepting, but not completely believing. I simply wanted an answer and that one made sense. I hadn't started to think about what we can expect for her future. Once I started doing that I started to hurt for my girl, badly. And then....

...I realized I was reacting to something that hasn't happened yet. My emotions and my reactions were based on speculation. Getting caught up in that emotional turmoil over something that hasn't happened yet isnt going to help me or my girl. It isn't going to help the other 3 kids that need me to be on the top of my game... and it definitely isn't going to help me focus on school work and pull out good grades.

I have to relax. We have an amazing team in place for my girl. Our pediatrician is amazing and supports our decision not to medicate right now. Her therapist is awesome and also supports our decision to withhold medicating. We do, however, already have a pediatric pharmacologist in mind for when we do decide we might need to medicate.

Next comes the school battle. Since this district already hates me I'm positive this won't be fun. It's entirely crazy to think that this public school system has the resources needed to appropriately support and educate my daughter. Her IQ is in the superior range and her social skills are seriously lacking. They aren't able to set up her school day in a way that supports her need for advanced work and delayed social skills. They don't have anyone on staff that has ever worked with a child with this condition.

In other ongoings....

Alexander is still rocking. I'm sure I've mentioned it before... its been going on for close to a year. He's now rocking so hard he busted a hole in the wall (with his pack and play, not his head). Last week our family therapist said  "This might not be a great time to mention this, but we need Xander evaluated.". She's right. I tried like hell to get EI to take me seriously when I kept begging them to evaluate Xander. They swore it was simply self soothing behavior that he would grow out of. They said I was seeing things because Beth and Peter have their issues. Fast foward almost a year.... and its worse, not better.

And Joelene.... can no longer get through a school day without being spoken to for something. Her teacher said its like an odd cycle. Jolie's academically above her class and clearly bored. Some weeks Jolie is on target and behaving beautifully, and some weeks she's not listening at all and being a major disruption. A few years back we were told by the psychiatry department at UMass that Jolie was possibly bipolar. Her behavior improved so much that I figured whatever it was she had grown out of it. Boy was I wrong...

So.... both Xander and Jolie are going to be followed for a little while to see if we can figure out what exactly is going on here.

Yes, really. All 4 kids.

Its been awhile...

And this time it was on purpose.

I had to keep quiet. I needed to think and I didn't want to share too much without certainty. Now we have certainty.

This past Tuesday I took Beth to see a psychologist for a psychological eval. I picked a doctor who had never met my child, had no prior access to her medical record or educational records, and therefore could form no prior opinion. I brought with me 3 solid years of IEPs, evals, and other diagnostic records. She spent 3 hours with Beth doing various testing.

She called me yesterday to let me know that she was diagnosing Beth with very early onset schizophrenia. This diagnosis is incredibly rare. This was a decision made with a lot of careful consideration. She spent hours reading the documents I brought her and going back over her own notes from the evals. In the end, its the only one that fits.

Obviously we knew this was coming. It still stings a bit. The doctor was talking about the possibilities for the future and how this may get significantly worse around puberty. She was discussing medications and the utter torment the voices can bring. It shook me, badly.

Now we need to work on getting a school placement that works for my girl. Public school isn't going to cut it. She's at extreme risk for bullying. Its all so much to take in at once, but we finally have our answer and now we can move forward.

Our history...

We have a long standing history with Elizabeth and her voices.

When she was 4 she had a full scale meltdown. Anyways, she came home from school hysterical. I can still see her curled up in her daddy's arms sobbing her little heart out. She kept saying, over and over again, that there were voices in her head and if she didn't get them out she'd never be able to talk again.

Later that year she had this grey Tshirt. Every time she wore the grey Tshirt she would say her name was Jamie. This is normal pretend play but at the time she didn't have any real pretend play skills. This passed eventually and I really didn't give it another thought. Both of these events prompted me to seek help for her but she was over 3 so it wasn't an Early Intervention thing and every place I tried said they didn't deal with children so young. The few people we were able to talk to all said it sounded like pediatric schizophrenia. We never followed up because eventually the behaviors seemed to fade.

Throughout all the time Beth engaged in fairly consistent self harm behaviors. She'd bite herself, hit herself, bang her head into walls and scratch herself. As she got older she started talking about throwing herself in a dumpster, shooting herself in the face, and running away. This past summer she started eating paper when stressed, pinching her brother and sister when she was stressed, being overall defiant.

This September she had a massive meltdown involving voices, hallucinations, and the whole works. It lasted for hours. She talked about it for weeks afterwards but with no sign of fear or stress.

The last few weeks here have been so intense with her voices/hallucinations. They are starting to appear daily.

Jamie, Clara, Carolese, Mia, and Elizabeth

Who are these people?

They are people who live in my child's head. In the kitchen this morning she was having a conversation with "Mia". She was discussing with Mia how her day should go and what she'd like to do. Apparently Mia had some ideas too because she was telling Mia they would have to wait until after school to do the things Mia wanted to do. 

I asked her about Mia. Mia is a girl in her class at school. Mia liked Beth so much that she decided to move into Beth's head. Mia still lives with her parents and goes to school. Both "aspects" of Mia are real. Beth went on to describe Carolese who is another girl Beth knows from school. Same situation. Clara is from the Nutcracker ballet. Clara moved in also. Beth said that both Clara in her head and Clara in the Nutcracker are real. The problem with that is that Clara is a make believe character in both situations.

Jamie. We've heard about Jamie before. When Beth was three years old she talked about Jamie a lot. She didn't really have any pretend play skills, but we figured Jamie was an imaginary friend and left it at that. We assumed Jamie went away when we didn't hear more about her, but apparently Jamie never left. Elizabeth is her, but not her. 

Confused yet?

Yeah, me too.

I asked a lot of questions. Gently. When she became defensive I assure her that I believe her and just want to understand. She was open, she answered as best she could and explained as best she could. She talked about how she doesnt want her teacher or her friends to know and I told her she doesn't have to tell them. I reminded her that I love her more than life and would always believe her and she can tell me, daddy, and grammy anything. 

She took all that in. Silently. And then...

"Mama, you know my brain works differently than everyone else's." 

Of course I knew that. That's kinda how I explained autism to her. I told her that.

"No Mommy, I mean my brain has advanced technology. Technology no one else has."

She wasn't able to explain that.

Soon after this her daddy woke up and she decided she was going to tell him about Mia, Clara, Jamie, Carolese, and Elizabeth.

Except she suddenly became silent.

"You tell him, Mama, I forgot."

I prompted without leading. She mumbled out their names. We talked about how we will always believe her and support her. She started dancing around like a weight had been lifted off of her and went off to school. 

Without her backpack.

Did she make it all up? Was her imagination in overdrive? Does that even matter? Regardless... it became in-your-face clear this morning that she's unable to separate pretend from real (I quizzed her using book characters and TV characters).