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!

The sounds of silence...

I haven't had much to say... for awhile there wasn't much going on.

To be honest, that was awesome. The kids were holding pretty steady. I, however, wasn't. I was very lost in a quiet depression I wasn't sure how to get out of. I watched as some relationships started drifting away because I wasn't able to put in the effort to hold them close. And then there were the couple of relationships that didn't drift anywhere because those people weren't about to let me drift away, whether they realized it or not. It was a pretty eye opening month in that respect.

My classes started back up and I read something in my Human Growth and Development class that shook me a little bit. It was a study about how a mother's mood affects small children. It scared me a little actually. The kids were doing so well and I was worried that if I stayed in my quiet and depressed mood I would inadvertently launch them into a depression and lets be honest, Beth doesn't need any help in that area. I started making small changes. More time on the floor playing with cars, more time playing video games with the kids (instead of watching them play), I've been teaching Joelene to crochet (Beth has no interest), and a renewed effort at guiding play between the boys. What I discovered is that we all were happier. There was more laughter, more fun, and less arguments. The kids were cooperating more. I was starting to enjoy life again.

We've had some major gains this month, aside from that. Xander is articulating so much better. He's questioning everything and showing a huge desire to learn. He's affectionate and silly. Instead of hurting our small animals he's loving on them. His sensory issues and temper issues are still significant and he is still not gaining in academic skills but verbally he making huge gains. He's also eating better foods with no fight. And he's growing like a weed. I can't believe my littlest one is going to be 3 soon!

Joelene is being not quite so devious. Since she's started crocheting she's redirected her focus into her craft. She's trying harder to be patient and working harder at her social skills. She's blossoming under the collaborative problem solving we are using, and she's made huge strides socially in school. She's turning into a little lady... almost like she's 7 going on 17. We still have a good amount of work to do on appropriate relationships, boundaries and attachments but I really have hope lately that she's going to have a great future. She's already thinking about college and a career.

Peter has had a few setbacks. He's having "angry days" at school. We aren't at all sure where the anger is coming from or why and his teacher is pretty concerned too. Right now we are all working as a team (home, school and therapist) to help him work through this. Anger isn't something Peter has had an issue with in over a year so its very worrisome that something is bothering him so badly. When he isn't angry, however, he's the sweetest little boy.

And Beth... my sweet Beth. She's made many gains at home when it comes to telling us how she feels. She's able to give herself a break when she needs one and the psychotic episodes have settled down quite a bit. The meltdowns and manic episodes have become far less and much more manageable and I am able to prompt her into breathing exercises. This is huge for her. During the school week, though, she's having extreme headaches (possible migraines), reflux, occasional vomiting, and serious sensory issues. We have pretty much pinned those down to stress reactions. We are still working with the school to come up with a way to make school a bearable place for her. One of the challenges there is that she holds it all inside and waits until she gets home to fall apart. Today was report card day. This child had a damn near perfect report card and literally melted down and decided she couldn't eat pizza at school for 1 week because she didn't get all A+'s. A's weren't good enough. They had to be A+'s.

And that's our update. Its mostly sunshine... and that makes me truly happy. Yes, at least two of them have severe mental illnesses. Life isn't miserable. We are constantly growing, learning, and expanding ourselves. We have our setbacks and our down times. We have our nights full of nightmares, our psychotic episodes, our violence, aggression, suicidal ideations, migraines, and refusal to eat. But we get through those times one breath at a time and those times make these quiet (mostly) pleasant times so much sweeter.

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.

Fighter

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. 

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.

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.

Thinking Out Loud (Sort of)...

     So the school thing.... temporarily (or maybe permenantly?) on hold. I've been thinking a lot about that today. I don't like how it feels to not keep going but I know right now it is the best decision.... especially that specific degree. I'm logical enough (most days) to know that the career path wouldn't work with my chaotic children. The thing is... I hate change. Even change that is for the best. I hate starting new things, ending things, new places, new routines... all change really. I don't know for sure whether this stems from my rather severe anxiety issues, or whether this is something entirely independant. Something to think about....

     Back to the school thing. That career path just wouldn't work. I knew that. I knew that long before it was pointed out to me several times. Right now I can't see a career path that would work. I have two kids on the autism spectrum, one with emotional/behavioral issues, and a baby. I can't afford daycare (and would never launch my crew at a poor unsuspecting daycare provider). I was thinking today that maybe I could work on a degree in child psychology. Even if I never use it for a career path it will help me understand my children and help me make better decisions for them (and with them). Once they are all in school maybe I could work for Early Intervention or something like that.

     On a completely different note, today with Joelene was a complete nightmare. Jolie has been spending a lot of time alone everyday in her room. Normally I don't mind this but its starting to get excessive. The weather today is amazing so I told her to go outside... and that's when the nightmare began. Peter was out playing on the (newly) enclosed swingset/sandbox and I told Jolie to go play with him. My mother and I were right on the deck so it wasn't like she was alone... but she lost it. She screamed and cried for over 4 hours. She hit, pushed, screamed, sobbed, was unbelievably hysterical over a fear of bees. I think we saw 2 bees the entire time. When logic prevailed she began her screaming again about she didn't want to be here and just wants to watch TV... which was the actual problem to start with. We made it through the tantrum... and I am happy to report that she is playing outside happily by her own choice right now. I guess it seemed like a good choice seeing as how I flat out refused to turn the TV back on today...lol.

     Right now Monkey is napping and the other three are outside playing. I am absolutely loving it!

Oh! Peter rode a tricycle today... I didn't get any pictures but I will soon!


  

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.