Sunday, December 30, 2012

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

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 Beth 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 Beth'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!  

Friday, December 28, 2012

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.

Thursday, December 27, 2012


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!

Tuesday, December 25, 2012


Christmas has come... and is now going....

It proved to be a rollercoaster holiday emotionally, which was quite fitting since 2012 in general was a rollercoaster year emotionally. I'm happy to say that I've made great stride in learning to process emotions and reach out to people who can help me process emotions when I get stuck. Despite the hurts I've felt over the last day or so, I feel better and stronger for how I handled them. Can't really ask for better than that.

That being said, the most important part of this holiday was that my children be happy. And happy they were... (when they weren't overwhelmed and melting down, which did happen a time or two).

Had to skip pictures of Peter since he insisted on not wearing pants and I just don't think his underwear pictures really fit

Its now 8:12pm. They are quiet. The boys and Joelene are asleep. Beth is quietly playing her video game and processing through the day. The dog ate some M&Ms. She seems fine. We are back to normalcy around here.

Saturday, December 22, 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

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!

Sunday, October 28, 2012


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. 

Sunday, April 15, 2012

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.

Thursday, April 12, 2012

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!

Friday, April 6, 2012

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!

Tuesday, April 3, 2012

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.

Monday, April 2, 2012


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:

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.

Friday, March 30, 2012

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.

Wednesday, February 8, 2012


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   =)

Monday, January 23, 2012

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.

Wednesday, January 18, 2012


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.

Saturday, January 7, 2012

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.