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.

Um...

Its been so long since I've had a chance to get back here. I've been reading blogs and wishing for the same way with words other people seem to have....

Anyways, what have we been up to? Oh, a ton....

Beth had her visit with the neurologist. It was definitely interesting and she chose to talk about the voices and noise in her head with the neurologist. This woman was wonderful. She asked all the right questions and was able to keep Beth engaged and comfortable talking. The doctor was, understandably, disgusted with the IEP set in place by the school system. She said there's no way that IEP acceptably supports Beth's advanced and unique needs. The report came out with some recommendations that the neuro would like to see put in place for Beth. Now comes the challenge of getting a meeting scheduled to go over that.

After the last meeting everyone was so intent on being helpful but that was short lived. We still have been unsuccessful at getting permission for our therapist to observe at the school. We have had no luck so far getting a meeting scheduled to go over the results of the neuro evaluation. Its one dead end after another with this school district.

On another note, we did have a sleep deprived EEG done on her. She hated it and was miserable. She sobbed and cried and begged me to take her home. She asked for her therapist and if one of my best friends hadn't been with me I would have called the entire thing off and taken my child home. In the end the EEG came back normal. I'm relieved that its normal but two weeks later I still hate myself for putting her through that.

We started a therapeutic playgroup once a week lead by her therapist. This seems to have made a huge difference in how our weekends go. She's been calmer and much more focused. We've had less breakdowns and an overall more put together child. It really is awful that we had to give up karate but this play group means she gets to go somewhere relatively small, is able to be herself (voices and all if it happens), and she gets to learn about herself, feelings, and directed social interactions. I really feel good about this.

Speaking of the school system.... I'm totally disgusted with the entire system. Peter came home with a report card showing that he's behind. No kidding he's behind. Whats worse is that this seems to have surprised them. Maybe they forgot that he's autistic. At least they've stopped sending home printouts of the pull ups website showing me how to potty train. They really seem to think parents are morons.

Jolie got chased, knocked down, and hit with sticks at recess yesterday. Apparently supervision is optional? She's fine, and she did seek out an adult and tell but my thought is that she shouldn't have had to. The adults should have seen it long before the sticks got involved. The boys weren't trying to hurt her, it was a game that got out of hand, but seriously....

Aside from all of that we've all been sick. This winter seems to have been insane for colds and ear infections. Xander has severe double ear infections right now. Miserable baby  =(. On a good note he's developing beautifully. He's talking up a storm, engaging and interacting, and developing right on target. He's such a happy kid, generally.

Yesterday I learned that I was accepted to the community college and into the degree program I chose. Financial aid paperwork is done, I'm just waiting for it to be reviewed. I'm nervous and excited all at the same time.

Must go... I have a meeting with our therapist any minute now but I wanted to update   =)

Phone calls, screaming kid, and migraines....

Not fun.

Peter has been off the wall today. Nothing is making him happy, everything is either too loud or not loud enough. He's pulling his own hair, jumping everywhere, and screaming. I've tried every method I can think of to help him. Now he's sitting on me and kicking me as he watches cartoons but he's quiet so I'll take it.

What have I learned from today's phone calls? The psychiatry department at Children's doesn't take our insurance. Now we're working on finding a child psychiatrist that does. The neurologist and the family support liaison at Children's think Elizabeth's IEP is awful and are working on how they can help get that fixed. Our insurance will, in fact, pay for a neuropsych eval as long as its billed as a medical necessity and not an academic one. We really don't need one for academics so that works for me. L, from Children's, is working on finding a provider that will do that.

This neurologist evaluation was one of the best moves we've made so far. I'm absolutely thrilled at the work they are putting into advocating for my girl. Her therapist and I can hold her together... we just need the evals done so we know what we're dealing with and how to help her best.

On a completely separate note,

I want to take classes online in psychology. Traditional school isn't going to work for me. I can't leave the kids and make appointments around a class schedule I have to attend. Yes, most of those close to me think I've lost my mind but the truth is I really find all of this fascinating and I want to learn more so I can help my girl too.  

And the migraine....

It's become a daily event again. Ugh.

Neurologist...

First, I simply have to say that Combos.... cracker Combos, to be precise, are amazingly good today. Snacking on Combos and diet Mountain Dew. I know, bad for the diet, blah blah blah.... save your breath today, Bethany  =P

Last night Beth and I talked a lot about the neurologist and what to expect. Truth be told I wasn't positive myself but I was honest with her and told her we would get through it together. I knew it wasn't going to be hard physically but I wasn't sure what the emotional toll would be. She was having an insane day yesterday anyways so I figured discussing it was better than letting her bottle it up. She gave me every reason why she couldn't go to see the neurologist. Everything from not wanting to miss prize day to not wanting to miss art class. I knew they were avoidance tactics, but I didn't want to blow her off either. I promised her I would call Mrs B myself and request that she still get her prize, and her daddy told her he would do art stuff with her when she got home. It took forever for her to fall asleep last night. The stress of everything was crushing her, but when she fell asleep she did really sleep.

We got to the neurologist about 45 minutes early. I hate how I can never accurately predict traffic. The office was bright and the staff was very nice. We met the doctor and Beth liked her right off the bat. We went over the history and I gave her a copy of just about every report I had on Beth. She was seriously impressed with my organization. Yep, I have her fooled.

Basically what it boiled down to is that we need more input from specialists that have seen this before. She is referring us to the psychiatry department and the center for developmental medicine. We are absolutely not medicating until we know what we are actually dealing with. There is going to be about an 8 month wait to get into the center for developmental medicine anyways. At some point she may want to do a sleep deprived EEG to rule out front temporal lobe seizures and maybe an MRI but right now those would be too stressful for her and there isn't enough data to support it being necessary.

Interestingly enough, yet not surprising, she was disgusted with Beth's IEP. She said Beth really has no shot at being successful with such a vague IEP. She is going to help us get the specialist input necessary to make sure the school system can not continue to get away with this. She took copies of the evals that the school has done and said there was more than enough info right there in their own evals to show that she needs more and can't understand why we are having to fight so hard to get her necessary supports.

That's it for now. My head is killing me.

She's frustrated....

My girl. That's pretty much how she feels about life right now. There's very little true happiness. In her school picture she looks scared, but she's smiling.

We made the decision to take a break from karate. The studio was wonderful and we don't regret a second we spent there, but right now she can't handle it. The stress of learning her forms, the stress of holding herself together in such a large group, the stress of feeling lost if one of the instructors wasn't by her side constantly. I'm sure I could have asked about the feasibility of someone being dedicated to her. I could have asked if I could be with her on the mats. I probably would have been more than welcome to do that, but lately she's becoming more and more unreachable.  I talked to her pediatrician, her therapist, my closest friends, her daddy, and just about anyone else who would listen. She loves Miss Lauren, Miss Meagan, Mr Brandon, and several other of her karate instructors and they had all been phenomenal with her. Finally I decided to talk to her and see how she felt. When we talked about taking a break from karate she said "I don't want to quit but I really need a break. It's too stressful." That was all I needed. If I can lessen the stress of her life even a little bit I will definitely do so.

She's at a loss without a clear cut schedule deciding her day for her. She will wander aimlessly trying to decide what to do with herself. It would be very simple to write out a schedule but my other kids find schedules stifling and overwhelming. There really isn't a right answer here.

Yesterday afternoon I received an email from her teacher. Right after lunch she began to tell her teacher she couldn't take it anymore. According to the email she was hitting herself in the head and highly upset because the voices were too loud. She's in a general education classroom. She doesn't have an aid. Her teacher is awesome but on her own. Her teacher ended up having to find immediate coverage for her class and taking my girl to the adjustment counselor. I was floored as I read the email. Up until then Beth hadn't mentioned any of it outside of her therapist and our home. I found myself incredibly thankful that we called a team meeting and had explained everything to the team two weeks ago. No one was caught off guard but the teacher does report it as an event that caught her off guard.

After that kind of day it was no surprise that we struggled so hard last night. She read as loud as she could in an attempt to drown out the voices. She cried, she played with the dog, she read a yarn magazine, watched cartoons, and did everything in her power to be okay. It was very late when she finally went to sleep.

Where do we go from here?

Today we go to Children's. I scheduled this appointment back in November. We're seeing a pediatric neurologist who is going to evaluate her and help us find the supports and hopefully the answers we need. They will also make recommendations for school supports and help us find ways to make her world less hostile.

Most of you who read this knows this... but its worth it to say anyways:

My child is not some freak of nature. She's a fun girl. She loves people, friends, and being included. If you were to see her for an afternoon the chances of you guessing that this was going on would be slim to none. She holds herself together so well and she makes me so proud as she faces these challenges everyday.

Ever changing life....

I've decided to break my silence. It's important to document and more important to share.

Life is a battle. Not just for me, but for my beautiful girl. She's struggling every day to make sense of her world. She hears voices, she sees things, she thinks things... and she can't tell the difference between what's happening in her head and what's happening in the world around her.

In a few weeks we see the neurologist. Her therapist, Y, who is on call constantly, is convinced autism is ruled out now. At the very least its co-existing with another larger condition. We aren't calling it anything yet because we really aren't interested in labeling before we're really sure.

This morning she became frustrated with her sister. This frustration led to her growling and hissing in her sister's face. This exact thing happened last night with her brother. She almost becomes animal like. It's hard to explain. I just know that I've entered a world I never thought I'd be apart of. I've read about it. I've researched it. I just never thought I'd live it.

All that matters right now is keeping all 4 of the kids happy and safe. All the kids are going to struggle with this, right along with Pookie. And I will be there every step of the way to guide them and help them.

Up until this week the school system was absolutely against us. They couldn't see and didn't want to hear it. Getting phone calls returned took weeks, IEP compliance was questionable at best, and getting a meeting scheduled took over a month. I kept on and I succeeded. Her therapist and I went in there and we really made ourselves heard. I feel like we made amazing headway and are on a path to success for her. All that matters is success. I've been reading books, reading online, talking to families, and learning everything I can about advocating for my child. I'm learning special education laws and how to prepare myself for the battles yet to come.

Through all of this I feel like I'm becoming stronger. I'm confident in what I'm learning. I'm confident as a parent, and I'm trusting myself to make the right choices for my girl. I know where to find those valuable resources and I'm learning how to use them. The most important thing I've learned so far is that a college degree is a piece of paper and doesn't mean anything if the person truly has little to no experience in the field. Never again will I be the one who defers to someone because they have a degree.