Winter...

... needs to go away.

Seriously. The blizzard was cool, its been awhile since we've had that much snow at once and the kids thought it was amazing! Aside from that, winter has been cold and uncaring this year.

Joelene's been sick on and off for what seems like weeks now. Nothing major, just annoying. The boys and I now have a massive cold. I'm drowning in school work for 5 classes and 2 of those are accelerated 7 week classes so I've literally barely had time to breathe. Add to that Peter's "angry" meltdowns and Beth's spikes in anxiety over yet another project at school (this would be project number 3... the anxiety is getting worse with each project) and the boys' sudden and unexplained fear of dogs we've owned for a year or more... yeah its been crazy.

I've only made it out of the house for quick store runs, my husband's weekly appointment, or the inevitable runs I have to make to the school every couple of weeks for Beth since November. My own health is iffy mostly because of stress coming at me from all directions.

So I started simplifying. I am making an active effort to stretch every hour. I've damn near tripled my water intake. I've simplified my nightly prayers/blessings because it was taking over 40 minutes a night to get through what I wanted to and I don't sleep all that much as it is so I needed a new game plan there. I like the simplified format better and nothing really had to be cut down.

I've been spending some time inbetween school work researching ways to cut expenses. I'm going to grow our vegetables this summer, we're going to eat very light this summer and focus on hitting sales to stock our freezers for the winter, and we're going to slim down birthdays and Christmas to fun but financially responsible.

I really need the spring to come back so I can get outside. I really feel better overall, and so do the kids, when we're outside. The girls are much more stable in mood, temperament  and mental health when they can spend most of the day riding bikes and playing in the yard. We all benefit hugely from being out in the sun!

Positivity... Part 2

According to spell check, I made up the word positivity. Either that or I butchered the spelling so badly that spell check has no idea what I'm trying to say. I like it, so I'm keeping it. That solves that issue...lol.

I follow quite a few blogs on a regular basis. Craft blogs, autism blogs, and mental health blogs... and that's only a few examples. What I've noticed about a lot of them is that they tend to focus on how hard things are. Let me make something absolutely clear before I continue here. Things are hard. So incredibly hard sometimes. The hard parts have to be shown, those parts are so important in order for people to understand what it is truly like to live the life we do. I value those blogs, those raw and incredible blogs, very highly.

That being said, I don't really have many times here where things are that hard. We don't need crisis intervention. We don't need psych hospitals, residential treatment centers, medication cocktails, or restraints. My children don't have many moments of violence or aggression (those moments do happen, just not often), they have never had any active suicide attempts (a LOT of talking about it, never attempted), and Beth has never been so lost in her psychosis that we couldn't reach her. I consider these things blessings but I do recognize that its very possible that we are living on borrowed time with these things. I take each day as it comes.

Two of my children do have regular self-injurious behaviors. One has near paralyzing bouts of anxiety. Three of them have sensory issues so badly that even basic normal activities have to have back up plans. Occasionally Beth's hallucinations and paranoia will get so bad that she will literally be unable to shower by herself. She will stand there under the water and just sob that she can't and that she forgot. Those are just a few small examples.

So yes, things can get hard here too. So many blogs cover the hard times though that I am going to focus more on our successes. I will touch on our hard times. I will touch on my sadness sometimes because I am human and sometimes I feel hurt or sad too. Most of all though, I'm going to remain positive. I'm going to show our silver lining. Because as this new year approaches I am going to do everything in my power to remain positive. I want to see if blogging regularly, and in a positive light (at least balanced with some rough times) helps me stay in the right mindset to correct some of my health problems. 

So bring it on New Year. I think I might actually be ready this year!  

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!