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.

Xander 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.

Peter 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.

Joelene 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.

Beth 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.

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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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!

Our history...

We have a long standing history with Elizabeth and her voices.

When she was 4 she had a full scale meltdown. Anyways, she came home from school hysterical. I can still see her curled up in her daddy's arms sobbing her little heart out. She kept saying, over and over again, that there were voices in her head and if she didn't get them out she'd never be able to talk again.

Later that year she had this grey Tshirt. Every time she wore the grey Tshirt she would say her name was Jamie. This is normal pretend play but at the time she didn't have any real pretend play skills. This passed eventually and I really didn't give it another thought. Both of these events prompted me to seek help for her but she was over 3 so it wasn't an Early Intervention thing and every place I tried said they didn't deal with children so young. The few people we were able to talk to all said it sounded like pediatric schizophrenia. We never followed up because eventually the behaviors seemed to fade.

Throughout all the time Beth engaged in fairly consistent self harm behaviors. She'd bite herself, hit herself, bang her head into walls and scratch herself. As she got older she started talking about throwing herself in a dumpster, shooting herself in the face, and running away. This past summer she started eating paper when stressed, pinching her brother and sister when she was stressed, being overall defiant.

This September she had a massive meltdown involving voices, hallucinations, and the whole works. It lasted for hours. She talked about it for weeks afterwards but with no sign of fear or stress.

The last few weeks here have been so intense with her voices/hallucinations. They are starting to appear daily.

Peter and Beth

I've taken to just titling the posts with the kids' names I'm writing about. Lazy? Probably....lol.


Anyways.


Peter.


Last night I came home from work and Peter was launched into fit throwing mode. His daddy was in the process of changing a very messy diaper, which has been happening a lot more lately. I can't tell if it's his teeth, or whether it's something else, but its causing destruction to the poor child's diaper area. I talked to him and snuggled him while his daddy finished the diaper change... and then I snatched up my baby and rocked him close. He laid his head against my chest for the longest time just watching me with those big brown eyes. JD went downstairs to grab us something to eat and I snuggled my son. It was much needed time for both of us. I think Peter and I both had a rough day, and the snuggles were perfect.

 He fell asleep with his head against my chest, listening to my heartbeat. I wasn't ready to put him in his bed.... so I laid him down next to me on my bed.

You absolutely can't beat great snuggles....


Elizabeth.

I never actually finished my Beth story. I know it seems done, or long at least...lol.... but its not done. I just got off of the phone with the Special Education coordinator and she said she mailed out a new copy of the IEP 3 days ago to have signed but that the school should absolutely be using her current (apparently unsigned) IEP and not her kindergarten IEP. Hopefully this will be resolved real soon. The current IEP calls for speech pull outs which is supposed to help her learn how to interact and express herself, especially her feelings. This is imperative to her success in school because all of the disasters that happened last week happened because she couldn't express herself and couldn't understand how to interact in the situations she was placed in.

Last night while I was at work Beth and her daddy tackled her homework. Since I wasn't there I didn't see it happen personally but from what I hear it was quite the experience. She had to make a hat out of things around the house. Since JD does a lot of leather work it was really simple for him to work out a basic hat design out of leather. Getting her to sit still and cooperate to put it together was another story. It took them about 2 hours.

She's going to start having spelling tests soon and I'm completely worried about her anxiety level. Beth is very focused on being the best academically. She has a real issue with this and becomes entirely unwound when she feels others are performing better than she is. I haven't seen this happen at karate at all, but this behavior was present all last year and her teachers fed into it despite me practically begging them to help her learn that "Beth's best" is all we are after, not "overall best".

Elizabeth

Beth started school on 9/7. Ever since then the world has crashed every day at 3:50 pm. She's angry, frustrated, emotional, and mean. I know that what we are seeing is a window to how she feels inside, and it breaks my heart. Literally.

The first day of school was awful for her. I knew it would be. We gave her the social story they created for her and she had already visited the school. Her new teacher even mailed her a letter before school started. I was hoping this would be enough. It wasn't.

Somewhere along the lines communication failed. I had no idea I was supposed to send her with a snack. I don't have any kids older than her and I swear the school never sent anything. It would have been nice if they did because then we could have avoided the complete melt-down she had when she got home because everyone had a snack but her. We made it through that and she now has her choice of snacks and juice boxes to choose from every morning.

I was hoping that was it.

We really weren't that lucky. Day 2 was a Wednesday. I took Jolene to karate... my sister waited for Beth at the bus stop and brought Beth to karate after she had changed. When Beth got there she was very upset. She said someone in the lunchroom made her sit in another spot away from her class. She was getting increasingly upset as she told me that she got lost and a girl had to bring her back to her class because her teacher couldn't find her. Once I got the story out of her and calmed her down it was time for her karate class, so I sent her in and hoped for the best. Her karate instructors are fantastic with the kids, so I knew she was in good hands and I watched her closely. She did wonderfully.... until the very end. The class went outside and started a "stranger danger" drill. Beth has done this drill before, so I decided instead of waiting with her for her turn I would go to the other side of the car they had staged and was going to try and get pictures with my cell phone. And that's when it happened.

She hadn't really been paying attention. I think her emotional resources were spent for the day and she was just going through the movements. All of the sudden she decided it was her turn. A few of the other kids showed her where the line was and this was her undoing. She started crying and yelling about not wanting to do it any more. In a matter of seconds one of her fantastic teachers was right beside her talking her through it. By the time I got back around everyone and to her she was calm and just wanted to go home. The kids came to apologize and we went home.

I did everything I could not cry on the way home. I was overwhelmed entirely and had no idea how to deal with the school situation. When we got home I wrote a letter to her teacher.... which returned to me unread the next afternoon. I think this is about the time where I realized that we may not be dealing with people who understand special needs as well as I had hoped they would. I admit to being really lost. JD and I went to the IEP meeting, we saw the evals, we heard the discussions.... we got a copy in the mail and read it over and over again. Signed and sent back the acceptance slip... and then had no idea what happened next. I had, wrongly, assumed that we would get some kind of communication. Like maybe a chance to meet her teacher ahead of time... something. So I sent her to school on blind faith without fully knowing what to expect.
That was my fault. I should have made someone explain this to me in layman's terms. It was my fault, but my little one is paying for it.

So the following morning I made sure Beth understood that there was a note for her teacher in her folder. My cell phone rang right around lunch time and it was her teacher. She expressed complete confusion over the story I had written her in my note. She had no idea that Beth had been moved in the lunchroom, or that Beth had gotten lost. She said she investigated a little bit and found that Beth had been moved from her normal table because she got up to throw something away without permission. That placed Beth in a different line to go back to the classroom than she was used to. She said all of the 1st grade classrooms are in the same hall so Beth was never truly lost.  I know the teacher heard my sigh in response. I don't know what made me ask, but I asked the teacher to explain exactly what makes up Beth's classroom environment. She told me that it is a general education classroom (I had a feeling, but the IEP was vague), that she has a handbook on PDD,and that if she didn't have paperwork on Beth she never would have guessed that she is on the autism spectrum.

I know the teacher didn't see this as a big deal. I know, from the way our conversation went, that she can't figure out why this simple incident was enough to cause me to write in about. She probably already has me on a list of problem parents, but in all honesty this is a problem. A real problem. Elizabeth had no idea what was happening or why. None of the events that seemed so simple to the teacher and the lunch aids made any sense to her. She was purposely removed from a place she felt safe and placed somewhere else for reasons she was unable to explain.

The teacher praised Beth's coping skills because Beth didn't seem upset about it and didn't tell the teacher what had happened. This, to me, is not coping. This was her bottling it up and letting it fester all day until she was safe with her family, her comfort zone.

Peter

So. Peter's Early Intervention evaluation was yesterday. I learned a lot. I didn't really think anything could surprise me but a lot of what they pointed out did surprise. Not so much that it was pointed out, but that I missed it to start with. I knew Peter has sensory issues, I knew he was developmentally behind in some areas... but I didn't look at it objectively enough to see the severity of the situation. I guess no matter how much you learn, study, and research you still miss things sometimes. Especially when the subject you are studying is so close to you emotionally.
My little man is 21 months. He's vibrant, energetic, and most of the time pretty happy. He loves Yo Gabba Gabba, Joelene, and being outside. He's my first little boy, and I love him more than my heart can even express. I've been accused in the past of being overprotective and of sheltering him, but I know now that I wasn't making the wrong decisions with him. I let him do things and experience things, just never too far from my reach.
Yesterday the team of 3 specialists came out to the house. I had Peter outside waiting for them so he could see them arrive and it didn't catch him off guard. They came in and we talked a bit while he ran around checking things out. The first thing they pointed out is how unsteady he is while walking. The words they used to describe his walking is "like he's in outer space". He doesn't have any real balance or center of gravity and is constantly bouncing himself off of things.
The next thing they noticed is how easily he frustrates. The smallest little thing throws him into a screaming fit. More often than not it is a high pitched, piercing, screech. He has no other ways to communicate, I get that. He doesn't understand how to ask for something, not even how to gesture for it. He just screeches and screams until we stumble upon the right answer. I already knew that part.
Peter flat out refused to participate in any of the games and tests they were trying. The specialists figured it was because they are unfamiliar people, but I realized without even being told that he never participates. I didn't fully see that until yesterday. He didn't behave any differently during that evaluation yesterday than on a normal day.
Peter has the ability to understand spoken language of a 5-7 month old. I didn't believe this one. I was sure they were wrong... until I tested it out myself. The results of my morning of unofficial tests proved to me that although we KNOW he can hear, you would swear he couldn't. If you visually prompt him (such as holding out your arms while calling him to you) he will respond, and usually favorably. If you just call for him and give no visual indication of what you expect, he doesn't seem to realize that you're talking to him.
As parents, I think we subconsciously see what works for our children... and we make adjustments for that without ever realizing it. In his case, I think subconsciously I knew he didn't understand and I made adjustments by adding visual cues. This hasn't hindered him.... at least he has SOME way of understanding what I need/want/expect from him.
I am doing my best not to sit around and wonder what I did to cause this. I know I didn't cause this. I'm stressed... extremely stressed... given what  their daddy and I are trying to accomplish with Peter, Jolie, and Beth. All three of them have special considerations, drastically different needs, and what seems like near constant appointments. Add into that a newborn and his appointments... and it makes for complete chaos. I'm also dealing with school and work... so yeah. I'm stressed.
It's okay though. I still stand by my perfect imperfect children... and I wouldn't trade or change them for the world....