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).

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.

Positive...

Yes, I am positive things need to change.... or keep changing, rather.

See, for reasons I simply can't put my finger on 2012 changed me. It wasn't a quick, hard, and fast change. It was a gentle, slow, and "oh wow I didn't even see it coming" change. I realized it sometime Christmas Eve after my own private pity party. I said it on my Facebook... I see 2012 leaving and I like what I see coming in 2013.

I have worked hard in 2012, to the horror of a lot of random people (mostly people I've never actually met in person), to keep Beth off of psych medications. She just turned 8 this past summer and I am simply not comfortable giving her these medications I have read about that are most commonly used and am not comfortable at all with them being given to my child. She does have high levels of anxiety, auditory and visual hallucinations, and disorganized thought patterns but she has responded very well to non-medication interventions. We don't discourage her coping methods at home. For the most part her hallucinations have been friendly and she's been able to keep the "bad voices" at bay, or come talk to me if they start to overwhelm her. We had our handful of scary hallucinations, really down times, and really scary moments but we made it through okay and those were the exception and not the rule. Should the time come where the status quo changes, we will make that decision but we do check in periodically with our med doctor and so far she agrees with our technique.

In order to keep her off of the medications I've had to do a drastic overhaul of my thinking. Lord knows I'm not perfect and I make quite a few mistakes. These mistakes have been learning experiences for all of us. Beth knows that Mommy can only handle so much at one time. Especially when Xander is in destructo-mode (which is 95% of the time), Peter is melting down because Beth and Xander combined are causing an over-stimulation for him, and Jolie is singing loudly to drown them all out. The girls and I are learning how to step back and wind down and in turn are able to work together to teach Peter how to. We are trying with Xander. He will pick it up in time.

When I'm not fighting off a cold I use certain scents of incense to help me focus and feel calm. I've also been using certain yoga poses. I do puzzles with the kids, Xander and I play cars, Jolie does a lot of coloring, and Beth does a lot of reading. The kids use Angry Birds to focus and unwind and I use crocheting and Bubble pop games. We have made so many great strides in 2012!

One thing I realized is that at some point in 2012 I stopped focusing on what I don't have and started to focus on how to get what I need. I don't sit around and complain about what I lack anymore. If I need something I do my best to find ways to provide it or provide for it. I'm learning how to ask for help. I'm learning to trust in myself in order to trust in others. One of the things that has stood out to me is that the more often I keep my attitude and mindset positive the better I feel in general. Its not a natural state for me, however, (which is sad to say) so it takes a lot of work and effort to stay positive and that can be exhausting. Its something myself and our therapist is working on with Beth too. Beth and I are learning together how to value ourselves even though we both find so many positive things about each other.

Its so exciting how much there is left to learn!