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).

Umm... yeah

So... did I mention that I was a week ahead of myself? This isn't vacation week. Try explaining that to a child with severe routine issues... lol. Luckily she loves school so she was relieved when I told her I was wrong.

We had a decent Easter... Beth and Peter were emotional messes by bedtime but that's pretty normal when it comes to holidays. We don't do big family functions so its really just the excitement and anticipation of the day plus the change in routine. They both work so hard to hold themselves together though.

I'm getting tubes put in my ears next Thursday so I can finally hear again and get rid of this nasty sinus crap that simply refuses to let me be. For whatever reason my ears refuse to drain and cause me all kinds of problems. Soooooooooo not fun.

Aside from that its been pretty humdrum around here. I'm crocheting still.. I need to do a picture blog soon!

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.

Peter and Beth

I've taken to just titling the posts with the kids' names I'm writing about. Lazy? Probably....lol.


Anyways.


Peter.


Last night I came home from work and Peter was launched into fit throwing mode. His daddy was in the process of changing a very messy diaper, which has been happening a lot more lately. I can't tell if it's his teeth, or whether it's something else, but its causing destruction to the poor child's diaper area. I talked to him and snuggled him while his daddy finished the diaper change... and then I snatched up my baby and rocked him close. He laid his head against my chest for the longest time just watching me with those big brown eyes. JD went downstairs to grab us something to eat and I snuggled my son. It was much needed time for both of us. I think Peter and I both had a rough day, and the snuggles were perfect.

 He fell asleep with his head against my chest, listening to my heartbeat. I wasn't ready to put him in his bed.... so I laid him down next to me on my bed.

You absolutely can't beat great snuggles....


Elizabeth.

I never actually finished my Beth story. I know it seems done, or long at least...lol.... but its not done. I just got off of the phone with the Special Education coordinator and she said she mailed out a new copy of the IEP 3 days ago to have signed but that the school should absolutely be using her current (apparently unsigned) IEP and not her kindergarten IEP. Hopefully this will be resolved real soon. The current IEP calls for speech pull outs which is supposed to help her learn how to interact and express herself, especially her feelings. This is imperative to her success in school because all of the disasters that happened last week happened because she couldn't express herself and couldn't understand how to interact in the situations she was placed in.

Last night while I was at work Beth and her daddy tackled her homework. Since I wasn't there I didn't see it happen personally but from what I hear it was quite the experience. She had to make a hat out of things around the house. Since JD does a lot of leather work it was really simple for him to work out a basic hat design out of leather. Getting her to sit still and cooperate to put it together was another story. It took them about 2 hours.

She's going to start having spelling tests soon and I'm completely worried about her anxiety level. Beth is very focused on being the best academically. She has a real issue with this and becomes entirely unwound when she feels others are performing better than she is. I haven't seen this happen at karate at all, but this behavior was present all last year and her teachers fed into it despite me practically begging them to help her learn that "Beth's best" is all we are after, not "overall best".