Fighter

Makes me that much stronger
Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter

~Christina Aguilera~ 

As the year draws to a close I've done some reflecting over the last year. So much has happened that I didn't blog about... some because the time to tell our story publicly hasn't come yet and some because I was just too tired of it all. 

My girl has had her ups and downs this year. After a very rocky start to the calendar year we ended up having a great summer. We had to mediate her IEP in July and ended up entirely changing her school placement which has still been nothing but a disaster but that fight is far from over. What I noticed was that this summer she was so together. We went to the beach a few times, we went to the zoo, we had a huge birthday bash, and she learned to ride her bike without training wheels! It was just a great overall summer. School started and the psychosis kicked back in. Its disheartening, but I've noticed a few things about the both of us. 

She can tell me she's struggling. How awesome is that?? I don't always have to guess now. Sometimes she's able to come right out and tell me something is wrong. She may not be able to tell me what, but she can tell me something is wrong.

She trusts me enough to talk about what's going on in her head. She can't explain it usually but she can tell me and share her world with me. She finally understands that I accept her world and I accept her. It has made a huge difference in her frustration levels and her ability to learn coping skills.

Those two accomplishments alone would be more than enough for me but she's made several more. She can now name adults she trusts, she can now ride her bike without training wheels, she's able to identify her interests, she can ask for her space when she feels she needs it, she is appropriately identifying her emotions far better than ever before, and she has expressed in words that home makes her feel safe and protected.

I mean really, how awesome is she?! 

My battles to get her a free and appropriate education and the services she needs in school has taught me a ton about myself. I never thought I was strong enough to fight for things like this. I know I have serious anxiety issues and I was sure that the anxiety would hold me back but what I learned instead is that when I get irritated I can focus better. I've found that I have become stronger, more confident, far more educated, and far less willing to accept answers that don't feel right. I no longer have any problem letting everyone know how I feel in a respectful but firm way.

This year has changed me in immeasurable ways. I've lost some close friendships and gained others. I have changed my school path for myself so I can get a degree in Human Services and I can really help people. I am happy with the person I am becoming and for the first time in a long long time I am starting to feel proud of myself. 

What the hell am I doing?

No, seriously. It is now officially school vacation week. Yesterday we had a nice birthday party for Xander and my best friend (S)'s son J. Xanders turned 2 yesterday and J turned 1... it was a kinda big party, but it actually wasn't. Together S and I have 8 children. Anytime our kids are together it looks like a big party.

The party was fun. Good times with good people and the kids were all great. Afterwards, looking at pictures, I realized just how huge I really am. Now trust me, this isn't one of those "oh look at poor me" drama statements. Its the statement of a 30 year old diabetic with 2 challenged children who needs to her head back into the game. S is beautiful... and tiny. I don't think I'm ugly, but I need some work. And not work because I think skinny is beautiful.... work because this simply isn't healthy and isn't being the best me I can be.

Don't get me wrong. I'm still 30lbs less than I was this time last year. I worked hard for that and I'm still very proud of that but when everything exploded with the kids, schools, evals, etc... I let myself fall to the back burner. I managed to only put back on about 2lbs but I didn't lose anymore. This has to change. I have to go back to being serious. I have to take care of myself. Lately, more than ever, I am acutely aware of the fact that no one is going to do anything for me. I have to do this myself. Likewise, if I get seriously sick no one is going to fix it for me. I have to get stronger in body, mind, and spirit.

I don't think I'm weak. I don't think I'm horrible or awful or ugly. I am constantly aware that I don't live up to the standards of those I respect. I always seem to be a day late and a dollar short, but its never from lack of effort. However, I've known this and I haven't done anything to fix it.

That's going to change.

Umm... yeah

So... did I mention that I was a week ahead of myself? This isn't vacation week. Try explaining that to a child with severe routine issues... lol. Luckily she loves school so she was relieved when I told her I was wrong.

We had a decent Easter... Beth and Peter were emotional messes by bedtime but that's pretty normal when it comes to holidays. We don't do big family functions so its really just the excitement and anticipation of the day plus the change in routine. They both work so hard to hold themselves together though.

I'm getting tubes put in my ears next Thursday so I can finally hear again and get rid of this nasty sinus crap that simply refuses to let me be. For whatever reason my ears refuse to drain and cause me all kinds of problems. Soooooooooo not fun.

Aside from that its been pretty humdrum around here. I'm crocheting still.. I need to do a picture blog soon!

Spring vacation...

Yep. It's the official beginning of spring vacation here. Day 1 and we've already had one sobbing meltdown. No, it wasn't me.

This one was Joelene. Princess Peanut cried for about 30 minutes because she says she can't believe in God, the Easter bunny, or Santa Claus. She says she can't believe in anything she can't see. We had a long talk about love, wind, and other various things she believes in but can't see. We talked about faith and trust. I think she gets it now but she's only 6 so only time will tell.

Mr. Monkey is turning 2 next week. I can't believe my baby is turning 2. He's growing so much but still has some very strong sensory issues. We are working on that and I believe the autism specialist that is going to start working with Peter is going to check Xander out just to be sure.

Still waiting on the written eval from the Dr. K about Beth. Once I have that we can continue the battle with the school to get my girl what she needs.

I'm trying to figure out what we are going to do this week to keep my kidlets occupied and engaged. I think maybe we might try a walk to the park one of these days depending on how my ears feel. I have to have my ears drained again on Monday. Fun stuff!

I feel like writing...

...but have no idea where to start. Today has been an incredibly difficult day and yet I can't pinpoint why. Today there was a crushing weight on my shoulders. It was like an iron blanket that refused to be lifted. I could taste the stress and it was choking me. I was lost in my own anxiety about things I simply can't control.

And then Peter fell asleep on me. Snuggled up against me as close as he could. Slowly the blanket slipped off. I could breathe again. As my child snuggled against me suddenly everything weighing me down didn't mean a whole hell of a lot. I was reminded why I'm in this battle to start with.

On a totally separate note Beth was found eligible to test for placement in the gifted and talented program. It's definitely something to consider. I'll have to sleep on that one.

Processing

1 in 30,000. The chances of my child (and yours) having schizophrenia prior to puberty is 1 in 30,000 (according to ABC's 20/20).

I've read and heard other numbers quoted since the diagnosis. I don't actually know what the numbers are and I'm getting the impression that no one really does. I spent a good amount of time looking for information, resources, anything really... anything to help me understand and gain some perspective. I looked up pediatric schizophrenia, early onset schizophrenia, childhood schizophrenia, very early onset schizophrenia. (Side note: Why the hell have so many names for one condition??) I really didn't find much. What I did find, however, was this:

http://abc.go.com/watch/2020/SH559026/VD5547558/inside-the-world-of-childhood-schizophrenia

Now, being the type of person I am I begged a few people that know my girl very well to watch it. We all had the same reaction. Her mannerism, her speech patterns, her expressions, and even her wording sounded just like these girls. One of the besties pointed out that she even does the same hand wringing that was seen in the video. I didn't notice but apparently its obvious because her husband noticed it too when he saw the episode. I've been watching for that.

Up until I saw this, I think I was fairly disconnected from the diagnosis. I think I was still stuck in the "Okay call it what you want" mode. I was accepting, but not completely believing. I simply wanted an answer and that one made sense. I hadn't started to think about what we can expect for her future. Once I started doing that I started to hurt for my girl, badly. And then....

...I realized I was reacting to something that hasn't happened yet. My emotions and my reactions were based on speculation. Getting caught up in that emotional turmoil over something that hasn't happened yet isnt going to help me or my girl. It isn't going to help the other 3 kids that need me to be on the top of my game... and it definitely isn't going to help me focus on school work and pull out good grades.

I have to relax. We have an amazing team in place for my girl. Our pediatrician is amazing and supports our decision not to medicate right now. Her therapist is awesome and also supports our decision to withhold medicating. We do, however, already have a pediatric pharmacologist in mind for when we do decide we might need to medicate.

Next comes the school battle. Since this district already hates me I'm positive this won't be fun. It's entirely crazy to think that this public school system has the resources needed to appropriately support and educate my daughter. Her IQ is in the superior range and her social skills are seriously lacking. They aren't able to set up her school day in a way that supports her need for advanced work and delayed social skills. They don't have anyone on staff that has ever worked with a child with this condition.

In other ongoings....

Alexander is still rocking. I'm sure I've mentioned it before... its been going on for close to a year. He's now rocking so hard he busted a hole in the wall (with his pack and play, not his head). Last week our family therapist said  "This might not be a great time to mention this, but we need Xander evaluated.". She's right. I tried like hell to get EI to take me seriously when I kept begging them to evaluate Xander. They swore it was simply self soothing behavior that he would grow out of. They said I was seeing things because Beth and Peter have their issues. Fast foward almost a year.... and its worse, not better.

And Joelene.... can no longer get through a school day without being spoken to for something. Her teacher said its like an odd cycle. Jolie's academically above her class and clearly bored. Some weeks Jolie is on target and behaving beautifully, and some weeks she's not listening at all and being a major disruption. A few years back we were told by the psychiatry department at UMass that Jolie was possibly bipolar. Her behavior improved so much that I figured whatever it was she had grown out of it. Boy was I wrong...

So.... both Xander and Jolie are going to be followed for a little while to see if we can figure out what exactly is going on here.

Yes, really. All 4 kids.

Its been awhile...

And this time it was on purpose.

I had to keep quiet. I needed to think and I didn't want to share too much without certainty. Now we have certainty.

This past Tuesday I took Beth to see a psychologist for a psychological eval. I picked a doctor who had never met my child, had no prior access to her medical record or educational records, and therefore could form no prior opinion. I brought with me 3 solid years of IEPs, evals, and other diagnostic records. She spent 3 hours with Beth doing various testing.

She called me yesterday to let me know that she was diagnosing Beth with very early onset schizophrenia. This diagnosis is incredibly rare. This was a decision made with a lot of careful consideration. She spent hours reading the documents I brought her and going back over her own notes from the evals. In the end, its the only one that fits.

Obviously we knew this was coming. It still stings a bit. The doctor was talking about the possibilities for the future and how this may get significantly worse around puberty. She was discussing medications and the utter torment the voices can bring. It shook me, badly.

Now we need to work on getting a school placement that works for my girl. Public school isn't going to cut it. She's at extreme risk for bullying. Its all so much to take in at once, but we finally have our answer and now we can move forward.