A Good Kind of Tired...

I wasn't going to write this tonight... I really wasn't going to to do anything tonight, but it sort of ended up being one of those nights where I couldn't shut my thoughts off.

The children... they shut down hard right about 8 pm. Which is a true testament to their awesome day since we got home around 7:15 pm roughly. The entire afternoon went off without one meltdown. No signs of obvious anxiety, depression, or drastic over-stimulation. It was as close to a perfect afternoon as I think I've ever seen. I really didn't want it to end. It was just so perfect.

All good things have to end though, and nothing good ever comes without a price, right?

Typically even the best days end with at least one massive meltdown. Tonight Beth cried a little as she expressed feeling uncomfortable* with Joelene branching out socially and when another child wouldn't let her kick a ball. And then she went to sleep. The epic meltdown never happened. And the things she expressed feeling uncomfortable* with are the very same things that were just written into her IEP on Friday as new goals (branching out socially and handling peer conflict) so there's no surprise that she found those two things a struggle.

Yeah, I think I can handle this.

Progress

Today was Beth's annual IEP meeting... and for the first time in 3 years not only was there obvious progress, but there was data (actual written data) to back it up!

It was an almost surreal meeting. This happened to be her 3 year re-eval to make sure she still qualified for services. That always makes me nervous but there really was little doubt that she still qualified. I honestly expected to have to fight for that. I was shocked when it was very aptly handled. We breezed through her evals which were pretty much exactly what was expected and then spent the following hour (yes, HOUR) going over the IEP line by line. Line by line. Literally. All of the junk I've been begging to have removed for years is gone (amid mumbles of "why was that even in there??"), things were moved and put into proper places, the team agreed that she absolutely can't be without a paraprofessional in the classroom all day so that stays. All of the accommodations currently in place were moved into the IEP and a behavior plan is going into place to handle "escape behaviors" and "neat and legible work" since the OT evals keep insisting its not an OT problem.

And the big piece...

She met the goals on her current IEP. Met them. You know, the goals she hasn't been able to meet in 3 years? She met them. I have data, accurate, honest, written data. I've seen with my own eyes outside of school that she now has those skills. So, we created some new goals.

I'm so. freaking. excited!

And if it all falls when school starts back up in the fall, then we meet again and fix it. The IEP actually looks like a real, honest, IEP.

This team really does seem dedicated to her success. Sometimes its merely a matter of getting the right people in a room together. Other times its letting a little girl work her way into people's hearts!

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.

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!

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".