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.