Waiting...

I've been waiting to post. I have a big huge idea for a post that I need to do, more for me than anything else. Really I write for me. When I do write.

This last week or two has been kinda rough for me. I'm 7 days away from a full month of not smoking and I ditched the horrible Chantix. I hit a point with the Chantix where dying was starting to sound like a beautiful and wonderful idea. That day I knew I had to stop. My girls are incredibly proud of me for not smoking anymore. I didn't realize how much THEY wanted me to quit. Their excitement over me putting down the cigarettes is reason enough to stick with it. I don't want to disappoint my kids if I can at all avoid it.

See, I haven't always been a great parent. I don't even know that I'm a great parent now. What I do know is that I have improved exponentially since the early years. In the early years I was overworked, overtired, and overwhelmed. My girls had their needs met. I worked long and hard hours, but emotionally I just wasn't invested or present. I couldn't be, I couldn't find time to be. I worked 45-60 hours a week and was lucky to get 4 hours of sleep a night. I wasn't taking care of myself physically, mentally, or even emotionally. I merely existed. I followed every step given to me by every therapist and doctor, faithfully, no questions asked. I truly believed I was being a great parent.

Fast forward a few years... it really wasn't until 2010 that I started to realize that I was doing things all wrong. That I really liked the Xanax prescription my doctor gave me a little too much (okay a LOT too much but that was a secret). I truly believe in many ways that Xander saved me. Saved all of us. I loved Xanax, but I loved Xander more. The night pregnancy test came back positive I stopped. I couldn't have done it without the support I was blessed with (and hours long phone calls) by two people who have never ever given up on me even in my worst moments. A lot more happened... we're just going to fast forward again.

So now we have this baby and we're desperately fighting to get services. Beth is over 3 so EI is out of the picture and there's NO ONE willing to help. She's too young for everywhere we try and the few people that will see her tell me they are pretty sure she's schizophrenic and they can't handle that in a 4 year old. Joelene is busy destroying everything she can get her hands on, Peter won't talk. Hell, he'll only scream. For hours. Every day. We start evals for Peter and my job says "Sorry, this isn't working out."

THAT is where I started to realize that I wasn't a good mother.

And this is a good place to stop because this is going to lead into where I'm headed next.

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.

Change

Change is hard. Growing is harder. Growing and changing at the same time... well that's just painful.

Yet that's exactly what I'm doing.

It wasn't really my intention. Anyone who's every truly known me knows I traditionally resist change. I don't like my routine altered, even a little. I have never seen the point in growing because, well, that's a change. Change alters routines. I don't like my routines altered. See where this is headed? Rinse, lather, repeat....

When I was younger I made it work with my ninja like cunning manipulation skills that I didn't even realize I had. I found (and married) a man who didn't require me to change or grow at all. I lived in childish ignorance and was quite happy there.

But, see... life doesn't really work like that.

Each baby changed me just a little bit. Maybe it wasn't really noticeable at first, but it was happening. Had I noticed it was happening I probably would have fought it. I didn't do change.

Regardless, it was happening. And the behaviors started. Followed by the diagnoses. One child after another, like a row of dominoes being knocked down. The more dominoes fell the more I insisted that I could do this alone and that I still wasn't going to grow. I wasn't going to change.

Did I mention I've been accused of being stubborn?

Where am I going with this? Hell if I know... I'm rambling again.

Around March I woke up one day (almost literally) and realized how incredibly lonely it was not to have a solid extended family. My children were missing out on so much. You know why? Because that's exactly how I designed it. Not really consciously, but I did. I wrapped us in a cocoon and kept us safe from the possibility of rejection. Its one of the same reasons I make sure to minimize my interactions with the general public. I take online classes at the local community college. Why? Because social interaction is seriously exhausting. Really, this post is becoming exhausting.

Then I ended up forced into taking a class in person. Trust me, this was NOT my idea and I was not okay with it, but I really had no choice. Low and behold, I did just fine. It was uncomfortable and it was exhausting. It was beyond challenging and I missed a few days, but I made it through and got an A.

During the weeks that class was in session I got a phone call inviting my husband, children, and myself to a social event. The call was completely unexpected, just a few days notice. The polite decline was on the tip of my tongue when I suddenly decided that we could, and should, try. More than that, that I WANTED to try. That I wanted to try for ME. Not just for my beloveds, but for me too.

We went, we did well, and we were invited to visit again. And we have received another invitation. I'll admit this one seems a bit bigger and has me a little more nervous, but we were invited again. The rejected I feared hasn't come yet. Know why? Probably because the rejection was only in my head to start with.

Step by step, day by day, sometimes simply hour by hour.... that's how we're making it through. Today marks 12 days smoke free for me. I have two semesters left of my Associates degree and then its on to my Bachelors degree and I think I decided today that there is a Master's degree in my future. I spent a few hours today locked in fascinating research on Reactive Attachment Disorder and that is an area that needs FAR more attention.

Life is good, friends.

How are you making it through?

Positive...

Yes, I am positive things need to change.... or keep changing, rather.

See, for reasons I simply can't put my finger on 2012 changed me. It wasn't a quick, hard, and fast change. It was a gentle, slow, and "oh wow I didn't even see it coming" change. I realized it sometime Christmas Eve after my own private pity party. I said it on my Facebook... I see 2012 leaving and I like what I see coming in 2013.

I have worked hard in 2012, to the horror of a lot of random people (mostly people I've never actually met in person), to keep Beth off of psych medications. She just turned 8 this past summer and I am simply not comfortable giving her these medications I have read about that are most commonly used and am not comfortable at all with them being given to my child. She does have high levels of anxiety, auditory and visual hallucinations, and disorganized thought patterns but she has responded very well to non-medication interventions. We don't discourage her coping methods at home. For the most part her hallucinations have been friendly and she's been able to keep the "bad voices" at bay, or come talk to me if they start to overwhelm her. We had our handful of scary hallucinations, really down times, and really scary moments but we made it through okay and those were the exception and not the rule. Should the time come where the status quo changes, we will make that decision but we do check in periodically with our med doctor and so far she agrees with our technique.

In order to keep her off of the medications I've had to do a drastic overhaul of my thinking. Lord knows I'm not perfect and I make quite a few mistakes. These mistakes have been learning experiences for all of us. Beth knows that Mommy can only handle so much at one time. Especially when Xander is in destructo-mode (which is 95% of the time), Peter is melting down because Beth and Xander combined are causing an over-stimulation for him, and Jolie is singing loudly to drown them all out. The girls and I are learning how to step back and wind down and in turn are able to work together to teach Peter how to. We are trying with Xander. He will pick it up in time.

When I'm not fighting off a cold I use certain scents of incense to help me focus and feel calm. I've also been using certain yoga poses. I do puzzles with the kids, Xander and I play cars, Jolie does a lot of coloring, and Beth does a lot of reading. The kids use Angry Birds to focus and unwind and I use crocheting and Bubble pop games. We have made so many great strides in 2012!

One thing I realized is that at some point in 2012 I stopped focusing on what I don't have and started to focus on how to get what I need. I don't sit around and complain about what I lack anymore. If I need something I do my best to find ways to provide it or provide for it. I'm learning how to ask for help. I'm learning to trust in myself in order to trust in others. One of the things that has stood out to me is that the more often I keep my attitude and mindset positive the better I feel in general. Its not a natural state for me, however, (which is sad to say) so it takes a lot of work and effort to stay positive and that can be exhausting. Its something myself and our therapist is working on with Beth too. Beth and I are learning together how to value ourselves even though we both find so many positive things about each other.

Its so exciting how much there is left to learn!

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. 

Processing

1 in 30,000. The chances of my child (and yours) having schizophrenia prior to puberty is 1 in 30,000 (according to ABC's 20/20).

I've read and heard other numbers quoted since the diagnosis. I don't actually know what the numbers are and I'm getting the impression that no one really does. I spent a good amount of time looking for information, resources, anything really... anything to help me understand and gain some perspective. I looked up pediatric schizophrenia, early onset schizophrenia, childhood schizophrenia, very early onset schizophrenia. (Side note: Why the hell have so many names for one condition??) I really didn't find much. What I did find, however, was this:

http://abc.go.com/watch/2020/SH559026/VD5547558/inside-the-world-of-childhood-schizophrenia

Now, being the type of person I am I begged a few people that know my girl very well to watch it. We all had the same reaction. Her mannerism, her speech patterns, her expressions, and even her wording sounded just like these girls. One of the besties pointed out that she even does the same hand wringing that was seen in the video. I didn't notice but apparently its obvious because her husband noticed it too when he saw the episode. I've been watching for that.

Up until I saw this, I think I was fairly disconnected from the diagnosis. I think I was still stuck in the "Okay call it what you want" mode. I was accepting, but not completely believing. I simply wanted an answer and that one made sense. I hadn't started to think about what we can expect for her future. Once I started doing that I started to hurt for my girl, badly. And then....

...I realized I was reacting to something that hasn't happened yet. My emotions and my reactions were based on speculation. Getting caught up in that emotional turmoil over something that hasn't happened yet isnt going to help me or my girl. It isn't going to help the other 3 kids that need me to be on the top of my game... and it definitely isn't going to help me focus on school work and pull out good grades.

I have to relax. We have an amazing team in place for my girl. Our pediatrician is amazing and supports our decision not to medicate right now. Her therapist is awesome and also supports our decision to withhold medicating. We do, however, already have a pediatric pharmacologist in mind for when we do decide we might need to medicate.

Next comes the school battle. Since this district already hates me I'm positive this won't be fun. It's entirely crazy to think that this public school system has the resources needed to appropriately support and educate my daughter. Her IQ is in the superior range and her social skills are seriously lacking. They aren't able to set up her school day in a way that supports her need for advanced work and delayed social skills. They don't have anyone on staff that has ever worked with a child with this condition.

In other ongoings....

Alexander is still rocking. I'm sure I've mentioned it before... its been going on for close to a year. He's now rocking so hard he busted a hole in the wall (with his pack and play, not his head). Last week our family therapist said  "This might not be a great time to mention this, but we need Xander evaluated.". She's right. I tried like hell to get EI to take me seriously when I kept begging them to evaluate Xander. They swore it was simply self soothing behavior that he would grow out of. They said I was seeing things because Beth and Peter have their issues. Fast foward almost a year.... and its worse, not better.

And Joelene.... can no longer get through a school day without being spoken to for something. Her teacher said its like an odd cycle. Jolie's academically above her class and clearly bored. Some weeks Jolie is on target and behaving beautifully, and some weeks she's not listening at all and being a major disruption. A few years back we were told by the psychiatry department at UMass that Jolie was possibly bipolar. Her behavior improved so much that I figured whatever it was she had grown out of it. Boy was I wrong...

So.... both Xander and Jolie are going to be followed for a little while to see if we can figure out what exactly is going on here.

Yes, really. All 4 kids.

I just want....

To be warm.

I understand that I live in New England, but I see snowflakes.

It's October. This is sooooooo unbelievably far from okay with me. My fingers are freezing. Might be looking up a crochet pattern for gloves soon. I can't crochet in gloves. This is going to be a problem.  =(

Anyways, cracked rib is healing. Today is the first decent day since Monday. I'm not fooling myself though, I have a long time left to heal. I'm just making sure to keep myself medicated and not do too much.

As for my beloveds....

Jolie's learning to read! She loves it so much and its so exciting for her! She went apple picking with her class last week and loved that too. She adores school and everything about it. She's also been a HUGE help since I  was added to the injured players list. She's my "little mama". Her hair is finally long enough for a pony tail again... I'm praying we're done with the "cut my own hair" phase.

Peter is a monster. No, really. He runs around yelling "RAWR". A lot. He gives great "yummy kisses", amazing snuggles, and is fun to share a blanket with while watching cartoons. He doesn't always make sense though. Like right now. He just told me he wants "rainbow fish". No idea what he's trying to get at.

Beth is far too old to only be 7. She's a near constant drama queen. Someone needs to be the drama queen. I mean its just not right not to have a drama queen in the family. And she's damn good at her chosen role. She's in love with science, so I think we're going to start doing some simple science experiments on the weekends. She'll love that!

Monkey is my giggler. Right now he's at the stage in life where everything is so funny. And his laugh is infectious. I can't help but giggle with him. He's not really in a snuggling stage and that sucks because I love snuggling with him, but watching him explore everything is crazy fun too. He's talking up a storm... and trying new foods constantly.

That's my update. Now I'm off to decide what I'm crocheting tonight. I think I'll work more on my flower. I really love the flower cushion and can't wait to see how mine comes out!

Friday night.....

As one son screams, two girls yell, and the second son looks on patiently..... I realize that this might be a great weekend to do some picture taking. And maybe some crochet animals. And finish the book I'm reading. And work on the afghan I've been crocheting for a year now. And... well, you get the point.

How does chaos bring about these thoughts? No clue, I thought maybe you'd have the answer.

This has been an insanely long and busy week! Beth started her after school program and she absolutely loves it! The girls are still going to karate and I'm slowly seeing some real improvements. They are building back the confidence they lost two weeks ago. Monkey-doodle has been chatting up a storm and running around like a crazy person.... and I'm loving every minute of it!

Peter had a rough week in school. Something (no clue what) happened at the end of last week. Something at school scared him horribly. Like to the point that he was simply never going back, in his opinion. All he could tell me was that school is scary, but no details. I called his teacher, I talked to the special ed coordinator, and came close to talking to the principal. No one could pinpoint what it was. A week later he still insists he's not going, but has a good day once he gets there.

Princess Jolie went apple picking with school today and had so much fun! I was seriously starting to consider the possibility of homeschooling but when I asked the girls if they'd rather learn at home or at school and they were quick to answer that they'd rather go to school.

This weekend we're doing karate and then we're going to spend the weekend hanging out together. Some yard work, movies maybe, and just celebrating each other and the strengths we all bring to this family. They're buttheads sometimes but I adore them.

Family

 I know I need support. Support outside of the ABA, Speech, OT, PT, and every other therapist you can think of. I wish, and I mean wish, that we could go somewhere, attend events, and socialize. I kind of miss summer cookouts, birthday parties, and the like.

This is on my mind today because we have been invited to my step-brother's daughter's first birthday. Yep, this makes her my niece. I've seen her twice since she was born. I can't really consider that close family. I have one sister, 4 step brothers, and 3 step sisters. Between them I have at least 12 nieces and nephews.... and can't say that any of them (except maybe one) see me and mine as family.

This makes me sad. I know a lot of it is because my priorities are insanely different than the rest of the "family"'s. They, for the most part, do not need to consider what the ultimate effect is going to be on two of their 4 children. They don't have to know exactly how large the event will be, whether it will be indoor or outdoors, if there will be a quiet area, or how long the event is expected to last. They don't have to worry about judgmental looks, odd behaviors, or social inappropriateness. Yes, this all happens. One way or another it usually ends up getting back to me. I brush it off, but it still hurts to know I will never have a true family atmosphere for my kids. They will be tolerated at the proper times... no one will dare be outright mean to them, but they won't be understood.

This may be my fault. I have systematically declined every invitation I have received in the last 3 years with the exception of two or three events. Each of these events have confirmed that I made the right decision declining the others. In all of the cases I didn't decline I spent the majority of my time ignored and left to chase my kids. I can chase my kids and be ignored at my own house... it's not at all fun doing it at someone else's house.

In the end I guess what it all means is that I want to go places, I want to socialize, I want my kids to socialize... to have friends, to have a support system. I want to socialize with people who aren't going to talk about my kids in a negative light at the end of the day. I want a family.

Happy Memorial Day!








I talked to the girls today about the meaning of Memorial Day. Not sure it stuck at all...lol... but I tried.



So this begins the busy week. Wednesday a lady comes out from Early Intervention to get the paperwork settled for Peter and then they are coming to evaluate him on the 23rd because he isn't speaking yet. I'm honestly not sure if he's just late or if something isn't quite right with him either. I'm honestly not going to be surprised if they tell me he's on the autism spectrum too. I think the powers that be have decided that all of my children will have some issues. This is okay with me though as long as I can get them what they need and help them grow to be the best they can be.These kids are far more important to me than anything in the world and even with their weirdness they are absolutely perfect for me. I guess its a good thing I find imperfection to be perfect =)



Right now I'm sitting outside on the deck and they are playing around me. Its about 70 degrees and sunny... and wonderful. Right now autism, ADHD, behavioral issues, refusal to talk, pediatric urology issues, and umbilical hernias are a distant memory. They are just kids, free from labels and problems, having a good time. There will be time for all that later.



Its a nice day... a relaxing day...



We are perfect =)