To my girlie

It's after 10:30pm. The rest of the house is asleep. I was going to try and sleep but then I heard something. I heard you, my child, talking and laughing away. I went to check on you and we had a quiet talk about how we have to be quiet this late at night. You mentioned your friends and the noise in your head.

I know that sometimes it seems like Mama isn't paying attention. What you don't realize, my love, is that I rarely miss a step. Everything about you and your siblings fascinates me. Every challenge leaves me exhausted but proud. Why proud? Proud because we haven't hit one yet that we couldn't overcome together.

When people talk about you to me one of the things they mentioned us how quick you are to share your feelings. I'm very proud of you for that. Mama struggles there in that way but somehow I managed, with the help of therapists, to teach you that amazing skill. Oh how I envy that skill.

One day you will more than likely read this. You are very aware of all I do and you have a huge desire to learn more and discover all you can. I hope when you look back you aren't upset by what I shared with the world. Your story is my story too, love. If you are upset, I know we will talk it over and adjust as necessary because we can communicate so well.

You are quiet now. I'm hoping you are finding peace and the sweetest of dreams. Goodnight my pooh bear. Tomorrow we hit the ground running again.

Things that make you go hmmmm....

These last couple weeks have been one hell of a ride. I'm drowning in school work, dealing with a massively crazy car situation, and of course working with the kids. The kids are doing very well and for that I'm truly thankful.

Marcus is exploding with new skills, better vocabulary, and better people skills. His sensory issues are still fairly serious but for the most part he's happy and that's really what I've been working towards with him. He's turning 3 next month and although he's still delayed in his skillset I'm really encouraged by what I've been seeing in him.

Jake is going through some angry days at school still and really doesn't like going to school anymore. Luckily he has an awesome teacher who is just as determined as we are to find out why. I have a sneaking suspicion that its the rigidity in thinking that we are seeing at play here.

Jill has blossomed so much in the last couple of weeks and I really hope we continue with this upward trend. She's been so helpful around the house and the constant stealing and lying has definitely decreased. I think the collaborative problem solving technique is working with her.

Rhya is doing okay. We are still in a holding pattern with her but she's really demonstrating amazing self control. We are still working on effective communication and this summer I plan to introduce gardening to her and see if getting her out in nature doing something she's shown interest in will help her center herself. I'm glad I didn't panic and medicate her a few months ago when it got really bad.

All in all I'm incredibly excited to see how much progress we've made with the kids without medication. I'm definitely not knocking medication. I know in some cases its very necessary but in our life so far we have made drastic parenting changes and have used therapy, social stories, patience, and lifestyle changes and so far this seems to be working. It may not always work, but I'll take the positives when I can get them...lol.

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.

Jill'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 Jake's "angry" meltdowns and Rhya'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 Rhya 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!

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, Rhya 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 Jill to crochet (Rhya 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. Marcus 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!

Jill 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.

Jake 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 Jake 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 Rhya... my sweet Rhya. 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 Jake. Jake 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 Rhya 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 Rhya'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. Rhya 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.