A Good Kind of Tired...

I wasn't going to write this tonight... I really wasn't going to to do anything tonight, but it sort of ended up being one of those nights where I couldn't shut my thoughts off.

The children... they shut down hard right about 8 pm. Which is a true testament to their awesome day since we got home around 7:15 pm roughly. The entire afternoon went off without one meltdown. No signs of obvious anxiety, depression, or drastic over-stimulation. It was as close to a perfect afternoon as I think I've ever seen. I really didn't want it to end. It was just so perfect.

All good things have to end though, and nothing good ever comes without a price, right?

Typically even the best days end with at least one massive meltdown. Tonight Beth cried a little as she expressed feeling uncomfortable* with Joelene branching out socially and when another child wouldn't let her kick a ball. And then she went to sleep. The epic meltdown never happened. And the things she expressed feeling uncomfortable* with are the very same things that were just written into her IEP on Friday as new goals (branching out socially and handling peer conflict) so there's no surprise that she found those two things a struggle.

Yeah, I think I can handle this.

Progress

Today was Beth's annual IEP meeting... and for the first time in 3 years not only was there obvious progress, but there was data (actual written data) to back it up!

It was an almost surreal meeting. This happened to be her 3 year re-eval to make sure she still qualified for services. That always makes me nervous but there really was little doubt that she still qualified. I honestly expected to have to fight for that. I was shocked when it was very aptly handled. We breezed through her evals which were pretty much exactly what was expected and then spent the following hour (yes, HOUR) going over the IEP line by line. Line by line. Literally. All of the junk I've been begging to have removed for years is gone (amid mumbles of "why was that even in there??"), things were moved and put into proper places, the team agreed that she absolutely can't be without a paraprofessional in the classroom all day so that stays. All of the accommodations currently in place were moved into the IEP and a behavior plan is going into place to handle "escape behaviors" and "neat and legible work" since the OT evals keep insisting its not an OT problem.

And the big piece...

She met the goals on her current IEP. Met them. You know, the goals she hasn't been able to meet in 3 years? She met them. I have data, accurate, honest, written data. I've seen with my own eyes outside of school that she now has those skills. So, we created some new goals.

I'm so. freaking. excited!

And if it all falls when school starts back up in the fall, then we meet again and fix it. The IEP actually looks like a real, honest, IEP.

This team really does seem dedicated to her success. Sometimes its merely a matter of getting the right people in a room together. Other times its letting a little girl work her way into people's hearts!

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.

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.

Peter and Beth

I've taken to just titling the posts with the kids' names I'm writing about. Lazy? Probably....lol.


Anyways.


Peter.


Last night I came home from work and Peter was launched into fit throwing mode. His daddy was in the process of changing a very messy diaper, which has been happening a lot more lately. I can't tell if it's his teeth, or whether it's something else, but its causing destruction to the poor child's diaper area. I talked to him and snuggled him while his daddy finished the diaper change... and then I snatched up my baby and rocked him close. He laid his head against my chest for the longest time just watching me with those big brown eyes. JD went downstairs to grab us something to eat and I snuggled my son. It was much needed time for both of us. I think Peter and I both had a rough day, and the snuggles were perfect.

 He fell asleep with his head against my chest, listening to my heartbeat. I wasn't ready to put him in his bed.... so I laid him down next to me on my bed.

You absolutely can't beat great snuggles....


Elizabeth.

I never actually finished my Beth story. I know it seems done, or long at least...lol.... but its not done. I just got off of the phone with the Special Education coordinator and she said she mailed out a new copy of the IEP 3 days ago to have signed but that the school should absolutely be using her current (apparently unsigned) IEP and not her kindergarten IEP. Hopefully this will be resolved real soon. The current IEP calls for speech pull outs which is supposed to help her learn how to interact and express herself, especially her feelings. This is imperative to her success in school because all of the disasters that happened last week happened because she couldn't express herself and couldn't understand how to interact in the situations she was placed in.

Last night while I was at work Beth and her daddy tackled her homework. Since I wasn't there I didn't see it happen personally but from what I hear it was quite the experience. She had to make a hat out of things around the house. Since JD does a lot of leather work it was really simple for him to work out a basic hat design out of leather. Getting her to sit still and cooperate to put it together was another story. It took them about 2 hours.

She's going to start having spelling tests soon and I'm completely worried about her anxiety level. Beth is very focused on being the best academically. She has a real issue with this and becomes entirely unwound when she feels others are performing better than she is. I haven't seen this happen at karate at all, but this behavior was present all last year and her teachers fed into it despite me practically begging them to help her learn that "Beth's best" is all we are after, not "overall best".

Elizabeth

Beth started school on 9/7. Ever since then the world has crashed every day at 3:50 pm. She's angry, frustrated, emotional, and mean. I know that what we are seeing is a window to how she feels inside, and it breaks my heart. Literally.

The first day of school was awful for her. I knew it would be. We gave her the social story they created for her and she had already visited the school. Her new teacher even mailed her a letter before school started. I was hoping this would be enough. It wasn't.

Somewhere along the lines communication failed. I had no idea I was supposed to send her with a snack. I don't have any kids older than her and I swear the school never sent anything. It would have been nice if they did because then we could have avoided the complete melt-down she had when she got home because everyone had a snack but her. We made it through that and she now has her choice of snacks and juice boxes to choose from every morning.

I was hoping that was it.

We really weren't that lucky. Day 2 was a Wednesday. I took Jolene to karate... my sister waited for Beth at the bus stop and brought Beth to karate after she had changed. When Beth got there she was very upset. She said someone in the lunchroom made her sit in another spot away from her class. She was getting increasingly upset as she told me that she got lost and a girl had to bring her back to her class because her teacher couldn't find her. Once I got the story out of her and calmed her down it was time for her karate class, so I sent her in and hoped for the best. Her karate instructors are fantastic with the kids, so I knew she was in good hands and I watched her closely. She did wonderfully.... until the very end. The class went outside and started a "stranger danger" drill. Beth has done this drill before, so I decided instead of waiting with her for her turn I would go to the other side of the car they had staged and was going to try and get pictures with my cell phone. And that's when it happened.

She hadn't really been paying attention. I think her emotional resources were spent for the day and she was just going through the movements. All of the sudden she decided it was her turn. A few of the other kids showed her where the line was and this was her undoing. She started crying and yelling about not wanting to do it any more. In a matter of seconds one of her fantastic teachers was right beside her talking her through it. By the time I got back around everyone and to her she was calm and just wanted to go home. The kids came to apologize and we went home.

I did everything I could not cry on the way home. I was overwhelmed entirely and had no idea how to deal with the school situation. When we got home I wrote a letter to her teacher.... which returned to me unread the next afternoon. I think this is about the time where I realized that we may not be dealing with people who understand special needs as well as I had hoped they would. I admit to being really lost. JD and I went to the IEP meeting, we saw the evals, we heard the discussions.... we got a copy in the mail and read it over and over again. Signed and sent back the acceptance slip... and then had no idea what happened next. I had, wrongly, assumed that we would get some kind of communication. Like maybe a chance to meet her teacher ahead of time... something. So I sent her to school on blind faith without fully knowing what to expect.
That was my fault. I should have made someone explain this to me in layman's terms. It was my fault, but my little one is paying for it.

So the following morning I made sure Beth understood that there was a note for her teacher in her folder. My cell phone rang right around lunch time and it was her teacher. She expressed complete confusion over the story I had written her in my note. She had no idea that Beth had been moved in the lunchroom, or that Beth had gotten lost. She said she investigated a little bit and found that Beth had been moved from her normal table because she got up to throw something away without permission. That placed Beth in a different line to go back to the classroom than she was used to. She said all of the 1st grade classrooms are in the same hall so Beth was never truly lost.  I know the teacher heard my sigh in response. I don't know what made me ask, but I asked the teacher to explain exactly what makes up Beth's classroom environment. She told me that it is a general education classroom (I had a feeling, but the IEP was vague), that she has a handbook on PDD,and that if she didn't have paperwork on Beth she never would have guessed that she is on the autism spectrum.

I know the teacher didn't see this as a big deal. I know, from the way our conversation went, that she can't figure out why this simple incident was enough to cause me to write in about. She probably already has me on a list of problem parents, but in all honesty this is a problem. A real problem. Elizabeth had no idea what was happening or why. None of the events that seemed so simple to the teacher and the lunch aids made any sense to her. She was purposely removed from a place she felt safe and placed somewhere else for reasons she was unable to explain.

The teacher praised Beth's coping skills because Beth didn't seem upset about it and didn't tell the teacher what had happened. This, to me, is not coping. This was her bottling it up and letting it fester all day until she was safe with her family, her comfort zone.