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!

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.

Our history...

We have a long standing history with Elizabeth and her voices.

When she was 4 she had a full scale meltdown. Anyways, she came home from school hysterical. I can still see her curled up in her daddy's arms sobbing her little heart out. She kept saying, over and over again, that there were voices in her head and if she didn't get them out she'd never be able to talk again.

Later that year she had this grey Tshirt. Every time she wore the grey Tshirt she would say her name was Jamie. This is normal pretend play but at the time she didn't have any real pretend play skills. This passed eventually and I really didn't give it another thought. Both of these events prompted me to seek help for her but she was over 3 so it wasn't an Early Intervention thing and every place I tried said they didn't deal with children so young. The few people we were able to talk to all said it sounded like pediatric schizophrenia. We never followed up because eventually the behaviors seemed to fade.

Throughout all the time Beth engaged in fairly consistent self harm behaviors. She'd bite herself, hit herself, bang her head into walls and scratch herself. As she got older she started talking about throwing herself in a dumpster, shooting herself in the face, and running away. This past summer she started eating paper when stressed, pinching her brother and sister when she was stressed, being overall defiant.

This September she had a massive meltdown involving voices, hallucinations, and the whole works. It lasted for hours. She talked about it for weeks afterwards but with no sign of fear or stress.

The last few weeks here have been so intense with her voices/hallucinations. They are starting to appear daily.

A picture blog!

I've been meaning to post...

No... seriously... I really have!

I even started drafts! There is so much to write about, to document, to share... but lets face it, I'm overwhelmed. Since my last post we've had Beth's graduation, Jolie's PT eval, Peter's accomplishments and setbacks, and Xander's huge accomplishment! A lot of this is great stuff, and I still find myself staring at the screen. It's not that I can't explain what happened... anyone with an active memory can. It's more like I can't find the emotion around what happened and I don't want my own blog to read like a TV owner's guide....lol.

Beth's karate graduation was a success and a disaster all at once. I'm so proud of my pookie... but she struggled hard. There were far more people there than we anticipated... so we didn't prepare her well. We brought all of the kids.... Peter wasn't having all those people around him. Nope. Not even close.  So Mommy and Daddy took up post outside (extremely large glass windows made it so we could keep Peter from the crowd and still see Beth! Yay for glass windows!)

It was just too much.... too many people, too much noise, and not at all prepared....

After several trips outside (where Mommy and Daddy were keeping Peter and Xander entertained).... she made the choice to try again! Grammy was taking pictures... and she kept looking over to make sure Grammy was still there.  =)

She made the choice to demonstrate with Mr. Victor... all by herself!!

She's exhausted. It's been a long, long, long night.

But she did it! She made it through the entire graduation (with several hundred trips outside)!!!

For inquiring minds who really want to know what the other two kiddos were up to while we were soothing Pookie and Bubba....

 Princess Peanut (Jillianne) sound asleep with Papa watching.....

Prince Monkey snuggled close in his carrier and watched the festivities.... from outside. He really wasn't interested in the noise either.

So... what have we learned?  I think we've learned that we're not all going to be able to go to karate graduations. Jolie is graduating to yellow belt on 12/17, and I think maybe Daddy and I will take her by ourselves.   =)

Sometimes it all falls into place.....

The appointment tonight with Beth's new psychologist was amazing. I really feel like we connected and were heard and we have found someone who wants to help our child. The entire hour was all of us talking. Beth demonstrated her stress and aggression when she was asked not to play with certain games. The psychologist feels that Beth fits the exact profile for Asperger's and really stressed that Beth needs a neuro-psych evaluation. We absolutely agree with her, but our bank account really doesn't agree. Neuro-psych evaluations are really not cheap and aren't covered by insurance in most cases. So... we're working on that. In the mean time she is going to start seeing Beth on a regular basis. She's going to focus on bio-feedback, stress and anxiety coping skills, and how to communicate her emotions. I like that option because I'm really not comfortable medicating her... not until we've exhausted all other options.

Jake has officially been diagnosed with PDD-NOS. Beth's therapist said PDD-NOS is really the "we don't know exactly what it is yet" diagnosis. Peter's behavioral pediatrician is really great. I really like how straight-forward she is. She is even willing to see Beth as well. Peter is going to be starting ABA therapy through Early Intervention on November 3rd. It will start out as 10 hours a week and over time expand into 20-25 hours a week. I know this is going to be the very best thing for us.... but re-arranging life for everyone in the house to accommodate that is already causing tension.

Lots to update!

I'll start with the meeting with Beth's teacher.

I believe Mrs. B has the best of intentions. I believe she genuinely wants what is best for my child and I really appreciate that. I also believe, however, that 5 weeks isn't long enough for her to know better than I do. She agreed to the meeting and she did listen... and she did come up with a fantastic idea of having Beth journal when she's upset. She admitted that Beth is emotional but also believes that it is normal for first graders. I agree with that statement... first grade is hard and some kids really do have a hard time adjusting to it.

Here's what I know...

I know she didn't feel that burn. How do I know this? I know this because I've lived with her for 6 years. I've seen her reactions to injuries. I once saw her have an outbreak of hives so badly the pedi had a hard time telling what they were and she never even flinched. I understand that she told the teacher it burned when she was questioned about it. She's not even the one who told the teacher... it was her classmates. Let's go over real fast what really happened....

She ran her hand over the pizza warmer. She felt a warm sensation. One of the lunch aids saw this happened and looked at her hand and told her she was burned. They sent her to the nurse's office and the nurse most likely made statements regarding how it must hurt, and how they should run it under cold water to make it hurt less. She went back to class where kids saw it and told her teacher that Beth got hurt. All of this resulted in Beth realizing it must hurt.

So no, she did not feel that burn and arguing with me about it is not going to change that fact.

I know she is overstimulated during school. I understand that the teacher doesn't see this. I absolutely get that she is perfectly behaved and shows no signs of overstimulation (that the teacher can pick up on) at school. But when she gets home she is overstimulated to the point of hurting herself. I double checked with a fantastic child psychologist... this is normal. She's storing up all of her anxiety, confusion, and otherwise negative emotions for home.

Yes, I think I found Beth a psychologist. I already really like this woman. Beth's initial appointment is 10/25. Yay for that!!



Peter's eval is Monday.... if we can get a diagnosis we will start ABA therapy through Early Intervention not long after that. We definitely need this diagnosis... he needs the therapy.

Jolie had her screening at the preschool today. No idea how that went... will know more next week.

=)

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.

Peter

So. Peter's Early Intervention evaluation was yesterday. I learned a lot. I didn't really think anything could surprise me but a lot of what they pointed out did surprise. Not so much that it was pointed out, but that I missed it to start with. I knew Peter has sensory issues, I knew he was developmentally behind in some areas... but I didn't look at it objectively enough to see the severity of the situation. I guess no matter how much you learn, study, and research you still miss things sometimes. Especially when the subject you are studying is so close to you emotionally.
My little man is 21 months. He's vibrant, energetic, and most of the time pretty happy. He loves Yo Gabba Gabba, Joelene, and being outside. He's my first little boy, and I love him more than my heart can even express. I've been accused in the past of being overprotective and of sheltering him, but I know now that I wasn't making the wrong decisions with him. I let him do things and experience things, just never too far from my reach.
Yesterday the team of 3 specialists came out to the house. I had Peter outside waiting for them so he could see them arrive and it didn't catch him off guard. They came in and we talked a bit while he ran around checking things out. The first thing they pointed out is how unsteady he is while walking. The words they used to describe his walking is "like he's in outer space". He doesn't have any real balance or center of gravity and is constantly bouncing himself off of things.
The next thing they noticed is how easily he frustrates. The smallest little thing throws him into a screaming fit. More often than not it is a high pitched, piercing, screech. He has no other ways to communicate, I get that. He doesn't understand how to ask for something, not even how to gesture for it. He just screeches and screams until we stumble upon the right answer. I already knew that part.
Peter flat out refused to participate in any of the games and tests they were trying. The specialists figured it was because they are unfamiliar people, but I realized without even being told that he never participates. I didn't fully see that until yesterday. He didn't behave any differently during that evaluation yesterday than on a normal day.
Peter has the ability to understand spoken language of a 5-7 month old. I didn't believe this one. I was sure they were wrong... until I tested it out myself. The results of my morning of unofficial tests proved to me that although we KNOW he can hear, you would swear he couldn't. If you visually prompt him (such as holding out your arms while calling him to you) he will respond, and usually favorably. If you just call for him and give no visual indication of what you expect, he doesn't seem to realize that you're talking to him.
As parents, I think we subconsciously see what works for our children... and we make adjustments for that without ever realizing it. In his case, I think subconsciously I knew he didn't understand and I made adjustments by adding visual cues. This hasn't hindered him.... at least he has SOME way of understanding what I need/want/expect from him.
I am doing my best not to sit around and wonder what I did to cause this. I know I didn't cause this. I'm stressed... extremely stressed... given what  their daddy and I are trying to accomplish with Peter, Jolie, and Beth. All three of them have special considerations, drastically different needs, and what seems like near constant appointments. Add into that a newborn and his appointments... and it makes for complete chaos. I'm also dealing with school and work... so yeah. I'm stressed.
It's okay though. I still stand by my perfect imperfect children... and I wouldn't trade or change them for the world....