Change

Change is hard. Growing is harder. Growing and changing at the same time... well that's just painful.

Yet that's exactly what I'm doing.

It wasn't really my intention. Anyone who's every truly known me knows I traditionally resist change. I don't like my routine altered, even a little. I have never seen the point in growing because, well, that's a change. Change alters routines. I don't like my routines altered. See where this is headed? Rinse, lather, repeat....

When I was younger I made it work with my ninja like cunning manipulation skills that I didn't even realize I had. I found (and married) a man who didn't require me to change or grow at all. I lived in childish ignorance and was quite happy there.

But, see... life doesn't really work like that.

Each baby changed me just a little bit. Maybe it wasn't really noticeable at first, but it was happening. Had I noticed it was happening I probably would have fought it. I didn't do change.

Regardless, it was happening. And the behaviors started. Followed by the diagnoses. One child after another, like a row of dominoes being knocked down. The more dominoes fell the more I insisted that I could do this alone and that I still wasn't going to grow. I wasn't going to change.

Did I mention I've been accused of being stubborn?

Where am I going with this? Hell if I know... I'm rambling again.

Around March I woke up one day (almost literally) and realized how incredibly lonely it was not to have a solid extended family. My children were missing out on so much. You know why? Because that's exactly how I designed it. Not really consciously, but I did. I wrapped us in a cocoon and kept us safe from the possibility of rejection. Its one of the same reasons I make sure to minimize my interactions with the general public. I take online classes at the local community college. Why? Because social interaction is seriously exhausting. Really, this post is becoming exhausting.

Then I ended up forced into taking a class in person. Trust me, this was NOT my idea and I was not okay with it, but I really had no choice. Low and behold, I did just fine. It was uncomfortable and it was exhausting. It was beyond challenging and I missed a few days, but I made it through and got an A.

During the weeks that class was in session I got a phone call inviting my husband, children, and myself to a social event. The call was completely unexpected, just a few days notice. The polite decline was on the tip of my tongue when I suddenly decided that we could, and should, try. More than that, that I WANTED to try. That I wanted to try for ME. Not just for my beloveds, but for me too.

We went, we did well, and we were invited to visit again. And we have received another invitation. I'll admit this one seems a bit bigger and has me a little more nervous, but we were invited again. The rejected I feared hasn't come yet. Know why? Probably because the rejection was only in my head to start with.

Step by step, day by day, sometimes simply hour by hour.... that's how we're making it through. Today marks 12 days smoke free for me. I have two semesters left of my Associates degree and then its on to my Bachelors degree and I think I decided today that there is a Master's degree in my future. I spent a few hours today locked in fascinating research on Reactive Attachment Disorder and that is an area that needs FAR more attention.

Life is good, friends.

How are you making it through?

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.