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.

Updates

It has been completely and overwhelmingly busy lately... but looks like it may be finally settling down. We still haven't had any luck on finding a provider for Jolie... and now Beth's doctor thinks she would benefit from a counselor but even less luck there. That's the one area I just can't seem to figure out.



Peter had his appointment in Worcester about his male issue... and got the all clear. Nothing at all wrong with his testicles, which is a good thing because I was really nervous about the possibility of testicular cancer. The pediatrician should seriously stop telling me anything so I have nothing to stress over....lol. We're mailing out his packet this week so we can get him seen by the neurologist and see what's up with him.