The sounds of silence...

I haven't had much to say... for awhile there wasn't much going on.

To be honest, that was awesome. The kids were holding pretty steady. I, however, wasn't. I was very lost in a quiet depression I wasn't sure how to get out of. I watched as some relationships started drifting away because I wasn't able to put in the effort to hold them close. And then there were the couple of relationships that didn't drift anywhere because those people weren't about to let me drift away, whether they realized it or not. It was a pretty eye opening month in that respect.

My classes started back up and I read something in my Human Growth and Development class that shook me a little bit. It was a study about how a mother's mood affects small children. It scared me a little actually. The kids were doing so well and I was worried that if I stayed in my quiet and depressed mood I would inadvertently launch them into a depression and lets be honest, Beth doesn't need any help in that area. I started making small changes. More time on the floor playing with cars, more time playing video games with the kids (instead of watching them play), I've been teaching Joelene to crochet (Beth has no interest), and a renewed effort at guiding play between the boys. What I discovered is that we all were happier. There was more laughter, more fun, and less arguments. The kids were cooperating more. I was starting to enjoy life again.

We've had some major gains this month, aside from that. Xander is articulating so much better. He's questioning everything and showing a huge desire to learn. He's affectionate and silly. Instead of hurting our small animals he's loving on them. His sensory issues and temper issues are still significant and he is still not gaining in academic skills but verbally he making huge gains. He's also eating better foods with no fight. And he's growing like a weed. I can't believe my littlest one is going to be 3 soon!

Joelene is being not quite so devious. Since she's started crocheting she's redirected her focus into her craft. She's trying harder to be patient and working harder at her social skills. She's blossoming under the collaborative problem solving we are using, and she's made huge strides socially in school. She's turning into a little lady... almost like she's 7 going on 17. We still have a good amount of work to do on appropriate relationships, boundaries and attachments but I really have hope lately that she's going to have a great future. She's already thinking about college and a career.

Peter has had a few setbacks. He's having "angry days" at school. We aren't at all sure where the anger is coming from or why and his teacher is pretty concerned too. Right now we are all working as a team (home, school and therapist) to help him work through this. Anger isn't something Peter has had an issue with in over a year so its very worrisome that something is bothering him so badly. When he isn't angry, however, he's the sweetest little boy.

And Beth... my sweet Beth. She's made many gains at home when it comes to telling us how she feels. She's able to give herself a break when she needs one and the psychotic episodes have settled down quite a bit. The meltdowns and manic episodes have become far less and much more manageable and I am able to prompt her into breathing exercises. This is huge for her. During the school week, though, she's having extreme headaches (possible migraines), reflux, occasional vomiting, and serious sensory issues. We have pretty much pinned those down to stress reactions. We are still working with the school to come up with a way to make school a bearable place for her. One of the challenges there is that she holds it all inside and waits until she gets home to fall apart. Today was report card day. This child had a damn near perfect report card and literally melted down and decided she couldn't eat pizza at school for 1 week because she didn't get all A+'s. A's weren't good enough. They had to be A+'s.

And that's our update. Its mostly sunshine... and that makes me truly happy. Yes, at least two of them have severe mental illnesses. Life isn't miserable. We are constantly growing, learning, and expanding ourselves. We have our setbacks and our down times. We have our nights full of nightmares, our psychotic episodes, our violence, aggression, suicidal ideations, migraines, and refusal to eat. But we get through those times one breath at a time and those times make these quiet (mostly) pleasant times so much sweeter.

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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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.

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!

Christmas

Christmas has come... and is now going....

It proved to be a rollercoaster holiday emotionally, which was quite fitting since 2012 in general was a rollercoaster year emotionally. I'm happy to say that I've made great stride in learning to process emotions and reach out to people who can help me process emotions when I get stuck. Despite the hurts I've felt over the last day or so, I feel better and stronger for how I handled them. Can't really ask for better than that.

That being said, the most important part of this holiday was that my children be happy. And happy they were... (when they weren't overwhelmed and melting down, which did happen a time or two).

Had to skip pictures of Peter since he insisted on not wearing pants and I just don't think his underwear pictures really fit here...lol.

Its now 8:12pm. They are quiet. The boys and Joelene are asleep. Beth is quietly playing her video game and processing through the day. The dog ate some M&Ms. She seems fine. We are back to normalcy around here.

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!