RAD

So now we all know the backstory.. the history. What exactly was the point of dragging all of that out in the open? The point was so that I could get from there to here....

RAD.

Reactive Attachment Disorder. It still leaves a bitter taste in my mouth. RAD (http://www.attachmentandintegrationmethods.com/disorders/rad/) frequently affects children who were adopted or in foster care. Nope, I don't have any of those, but I do have a child diagnosed with RAD.

Symptoms:

Speech: Constant chatter; nonsense questions, abnormal speech patterns Eating: hordes, gorges, refuses to eat, eats strange things, hides food Lying: Lying for no apparent reason; Lying when the truth is obvious; false allegations of abuse Stealing: Sneaks things w/o permission that could have been obtained by asking; stealing from family, school, others; theft of items with no apparent value or use Affection: Indiscriminate affection, often to strangers; demanding or clingy, often at inappropriate times; not affectionate on parent’s terms Regulation: Tantrums and rages may go on for hours; something apparently minor may provoke World War III; difficulties tend to escalate into major events; cannot self-regulate Control, Triangulation, and Manipulation: Ultimate need for control; manipulative; need for structure and schedules; often trinagulates adults; Superficially charming and engaging, especially with outsiders Friends: Poor peer relationships; shallow relationships; relationships don’t last; friends frequently don’t meet parents’ approval or are a bad influence Problems making eye contact (but may make eye contact when angry or lying) Oppositional: Argumentative, often over apparently insignificant things; differences escalate; non-compliant with family rules Destructive to property of others, especially those most closely related; may be aggressive or violent, especially during rages Self-destructive: Behaviors may be risky or directly self-harming Impulsivity: Impulsive, does not appear able to learn from consequences or mistakes; does not appear to understand cause and effect Hygiene: May refuse to wash, shower, groom hair, use deodorant Attitude of entitlement and self-importance Developmental / Learning delays Pain Tolerance: May have a high threshold for big hurts, but pitch a fit over minor ones Nit-picky over details, but ignores the main point May appear to lack empathy and a conscience Hyper vigilant Fascination with fire and blood and gore Cruelty to animals Parents appear hostile and angry

I know, its a lot to read. But if you read the last post and then come here you're going to see that a LOT describe Jolie. If you had the pleasure of knowing her a few years ago you will be literally stunned by how many describe Jolie. Even today, quite a few still affect her.

But how? I never left her alone. Aside from the relatives in the house I never used a babysitter. I was with her every single night unless I was in the hospital. I was devoted to my children. 

But I wasn't there emotionally. If you remember I told you that I checked out when she was barely a year old. I reached the threshold of what I could handle and I emotionally checked out. 

Really, I don't think anything hurts as bad as knowing that I caused this. 

I didn't know anything about RAD until about 3 months ago. We tried every form of therapy and parenting we could find with Jolie. She didn't care at all about punishments, sticker charts, marble jars, rules, or other people's emotions. Hell, this child put my kitten in the dryer and turned it on at the age of 3.5. (Kitty lived... barely). It wasn't until I switched to Collaborative Problem Solving that we started making any headway. The meltdowns decreased and she started engaging. Her teacher was reporting problems in school with emotional regulation and she worked of not engaging in manipulation attempts (yes, a child CAN be manipulative) but she had no idea what we were facing either. We slowly started to rule things out but our focus was still Beth. Beth required a HUGE amount of focus and attention. Jolie could not get along with any of her peers. It was baffling. I had Jolie evaluated by the same psychologist who ultimately decided on schizophrenia for Beth and she said Jolie is incredibly intelligent and is unfortunately suffering from having a significantly mentally ill sister and a moderately severe autistic brother. I didn't buy into that at all but was able to see that Jolie had pulled the wool over this doctor's eyes.

(I apologize now if I'm out of order or scattered. This is much harder to write than I anticipated it would be... still, it needs to be done.)

About 3 months ago her therapist told me she believes Jolie has RAD. I googled it.. and immediately texted her with my intense protestations. This can't be possible, can it? I didn't abuse her... no one ever abused her. She wasn't adopted or in foster care. I would never hurt her... how??

At the time our therapist let me run through every reason why this couldn't be possible. She assured me that she didn't believe for a second that I had abused any of my children. She knew they had never been abused, that I had protected them as fiercely as I knew how from any danger (too fiercely, in fact). She knew they had never gone with aunts or uncles, knew no cousins, had never been exposed to anything I didn't know about. And then she stopped talking about it. She would answer questions when I asked but she didn't engage in conversation. This woman, as irritating as it is, understands how to let me get to where I need to be. 

I continued with my psychology classes for my Human Services degree. I read about RAD, I knew that was the most accurate description of Jolie's behavior I had ever seen but I was still very stuck about the "caused by abuse/neglect" part.

I talked, a LOT, with besties B and H. They understand RAD (or are learning with me). I bounced ideas off of other therapists and licensed counselors. 

And here comes my realization.

I caused her RAD by being emotionally unavailable. My focus was on Beth because that's where it needed to be. If I had it to do over, I could do it differently because I know better now. I'm educated and experienced now. I understand how to provide for one while still tending to the urgent needs of the others. I was not emotionally unavailable enough for DCF to decide I was a danger (remember, they knew me well  by that point) but I wasn't prepared and my cries for help went unanswered.  In all fairness I don't think the help was there. 

And here's my point. There are a ton of us. Mothers and fathers raising multiple children with mental/physical/psychological challenges. When one of our children gets diagnosed RAD we end up being labeled bad parents. The RAD support groups insist that our children are misdiagnosed because they are our biological children. The other support groups don't want us because they don't know anything about RAD and those children are "bad". Plus, RAD is caused by neglect, remember? If you're the biological parent then you're the "abuser", remember? 

Little secret for you... those of us who have children with multiple diagnoses or complicated ones... we still need our kids to belong. We need to belong. We need to, especially when we don't think so. We need to especially when we're most afraid to. We need family, friends, peers, even just a smile. And if you think I should speak for myself, then you need to belong too. 

Jolie is doing significantly better. There are environments she doesn't do well in (karate, very large groups, etc). She doesn't get personal space or personal boundaries and if she's allowed to she will be highly inappropriate. Since we moved to the Collaborative Problem Solving and natural consequences instead of the traditional time outs and punishments she's finally making progress. With natural consequences she can't find a way to blame it on anything but her own actions. I am working on personal responsibility and accountability with her. It doesn't always work out very well, but we will keep trying. She still has classic sociopathic behaviors, chronic lying, and blatant manipulation techniques but they are less frequent right now. While we're in this down time cycle I'm studying RAD, following a phenomenal YouTube blogger who deals with this in her own children and has wonderful parenting techniques, and picking the brains of a few professionals. The changes I made in parenting have helped move Xander from an obviously developing RAD case to a more typical 3 year old with a few sensory issues. 

So.

Yes, my daughter has RAD. Yes, I'm her biological parent and she has never been to foster care. There are more like me. Imagine what we could accomplish if we banded together and helped each other through this. This is why I'm writing (I know I'm not very good at it lol) and this is what I will do with my life.

If you need help, if you need me, if you need anything.... I will help you or find you help. Try me.

Full disclosure...

Alright, time to get deep and painful.... and come out somewhat coherent. I am blessed to know most of my readers and that's kind of comforting as this post demands to be written, needs to be written, and must now finally be written.

So in the last post I rambled. Continuing on.....

When Beth was approximately 6 months old I discovered I was pregnant with Jolie. Literally days after we moved back here from Texas. The timing could not have possibly been worse. To say I was horrified was a serious understatement. We had just moved almost 3,000 miles with Beth who was still an infant. We had a little money saved but no job yet. I cried every single day... until I hit about 29 weeks and landed in the hospital for pre-term labor. And then I begged and pleaded with whatever universal power would listen to save my baby. True hypocrisy, I know. Labor did stop and Jolie hung on for 10 more weeks... life was good.

Only something was wrong. As I suffered through bedrest and 3 OB appointments a week Beth started regressing. She lost all her words, she refused to play with me, and holding her was likely to get a person hit, bit, and kicked. Initially I believed the regression was coming from my pregnancy. After spending the day with extended family, I learned that my aunt, who is a teacher, believed something was very wrong.

Fast forwarding again.... Jolie was born and not long after Beth gets diagnosed autistic. Early Intervention came in and prescribed 25 hours a week of one on one therapy. Two sessions a day. I was working 50+ hours a week, husband was there but exhausted, Jolie was confined to a playpen during the therapy because they asked that she not be a distraction. Jolie had a MASSIVE problem with... well.... anyone who wasn't me. She tolerated her daddy because she had to when I was working. Aside from that she screamed non-stop unless she was right up on top of me. I couldn't leave her sight. Beth developed a nasty habit of fecal smearing. Yes, its not pretty but there's a very real reason I'm including this. Early Intervention told me they had NO idea how to make this stop, no clue why she would be doing it, but I had better figure it out. Jolie's social anxiety went from bad to worse as all of my attention was on Beth and her behaviors.

Early Intervention decided that what I needed was DCF and we were reported for neglecting Jolie's development around Jolie's first birthday. That day I truly wanted to give up. I told no one... I was horribly embarrassed. DCF came in and referred Jolie to Early Intervention for developmental testing. Imagine my surprise when Jolie scored ahead of her age group. Did you read that? She scored ahead of her age group. But it was EI that said I was neglecting her development. DCF decided we could benefit from free daycare. They had nothing else. They did, however, remind me on a regular basis that they could take my children if I didn't fix the fecal smearing, the behaviors, and Jolie's anxiety. They asked me to get my own counselor and I did but she was so stunned by my situation that she admitted she couldn't help.

That, folks, was the help offered to me. Around the age of 3, as Beth was aging out of EI, hallucinations started to appear. EI and the pediatrician assured me it was pretend play. Only EI's evals kept coming back saying she lacked pretend play skills. The one psychiatric facility that would see a child that young (pedi's referral) wanted to start Beth on psych meds. I knew nothing of the great med debate but I knew that it was going to be over my cold dead body that someone gave my 3 year old psych meds without a diagnosis.

Can you guess where I was emotionally by this point? My 3-4 year old had no concept of reality, had hours long meltdowns screaming about voices trying to kill her, self injured like nothing I had ever seen in a toddler,  wandered off any chance she got and at one point jumped off my dryer with the cord from the window blinds wrapped around her neck. My 2-3 year old was violent, aggressive, destructive, mean, hateful and could only stand me for the most part. I was working full time overnights... and I had a newborn. I wasn't there emotionally. I checked out emotionally back when EI called DCF and reported me for neglect. I was emotionally stunted and felt numb and dead inside.

The years didn't get any kinder. No mental health provider would see Beth, my insurance didn't cover autism treatments, and Jolie threw fits that last 3-4 hours on a regular basis. UMass couldn't decide if Jolie was a 4 year old bipolar or ADHD but they said something was terribly wrong and they would help us find ongoing help... only the ongoing help never came. She grew to be violent, she destroyed everything she touched whether it was hers or not, she lied, she cheated, she stole, and she obeyed nothing. There was no amount of consistency or consequences that changed anything. And I got pregnant again. This time Mama was as gone as any one person could be possibly be. I was addicted to Xanax, losing my job, and Peter was starting to show signs of autism. Then my gall bladder went, the baby I was carrying was in danger, working wasn't possible, and I couldn't correctly parent my children. I wasn't able to emotionally or physically.The pediatrician kept telling me Peter couldn't be autistic... I was clearly seeing things because I had a child on the spectrum already. The pediatrician told me they were sure Beth was schizophrenic but none of the specialists would see her.

I changed pediatricians. (Oh, I quit the Xanax too... that wasn't easy and wouldn't have been possible without two people who refused to give up on me and to this day still haven't given up. I love you!) Changing pediatricians was the first step to real change (I didn't recognize it then, I see it now). The new pedi wasn't at all impressed with how much had been overlooked and started the eval process for Peter, the UMass mental health eval for Jolie, and real and true support for Beth.

Then I lost my job. I was given the option to resign instead of being fired but it was made clear I couldn't stay there. The cable company wasn't prepared to deal with my health issues and the time off I needed for the kids. This was step number two to a real change (Nope, still didn't recognize it). I had a TON of time now to dedicate to finding help, only there was none out there. I was finally starting to warm up to being a real parent (not a shell of a parent) but I wasn't all the way there yet.

We stumbled upon (with the help of the insurance agency who actually worked HARD at finding me help) a therapist who wasn't intimidated. She also wasn't fooled by feeble attempts to be an adult. She saw me for what I was.... a girl who got stuck developmentally during the teen years. I wasn't very cooperative for quite a while. I really didn't expect her to stick around. She earned my trust slowly and without judgement. She encouraged parental growth in small ways (mostly by making me think it was my idea...lol).

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.

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!

Coming up....

Maybe, in the near future, I'll get better at titles. Probably not, but maybe....

There's a massive amount of things running through my brain that I really want to make sense of so this space is going to be for that. Those of you that I know personally who read this will absolutely find it interesting. If you don't... well, you can't say my blog was every really that interesting to start with then, can you.

Its going to get raw, at times uncomfortable, and sometimes it won't make sense right away. But its going to  be one hell of a ride!


Tomorrow night Beth has her all city choral night. She's so nervous but so very excited to share what she's worked so hard on all year. I intend to video it so she can watch it later and so not-so-local family and friends can see it. I think I've decided to leave my boys at home. They really don't do well in large groups of people and its going to be late evening so there's really no reason to push them. Joelene can't wait to see her sister perform though!  I'm not sure who's more excited!

And I have it on good authority that some of the grandparents will be in attendance. B will be SO excited when she realizes that. Good things for my good girl! <3 data-blogger-escaped-p="">

To my girlie

It's after 10:30pm. The rest of the house is asleep. I was going to try and sleep but then I heard something. I heard you, my child, talking and laughing away. I went to check on you and we had a quiet talk about how we have to be quiet this late at night. You mentioned your friends and the noise in your head.

I know that sometimes it seems like Mama isn't paying attention. What you don't realize, my love, is that I rarely miss a step. Everything about you and your siblings fascinates me. Every challenge leaves me exhausted but proud. Why proud? Proud because we haven't hit one yet that we couldn't overcome together.

When people talk about you to me one of the things they mentioned us how quick you are to share your feelings. I'm very proud of you for that. Mama struggles there in that way but somehow I managed, with the help of therapists, to teach you that amazing skill. Oh how I envy that skill.

One day you will more than likely read this. You are very aware of all I do and you have a huge desire to learn more and discover all you can. I hope when you look back you aren't upset by what I shared with the world. Your story is my story too, love. If you are upset, I know we will talk it over and adjust as necessary because we can communicate so well.

You are quiet now. I'm hoping you are finding peace and the sweetest of dreams. Goodnight my pooh bear. Tomorrow we hit the ground running again.

Things that make you go hmmmm....

These last couple weeks have been one hell of a ride. I'm drowning in school work, dealing with a massively crazy car situation, and of course working with the kids. The kids are doing very well and for that I'm truly thankful.

Xander is exploding with new skills, better vocabulary, and better people skills. His sensory issues are still fairly serious but for the most part he's happy and that's really what I've been working towards with him. He's turning 3 next month and although he's still delayed in his skillset I'm really encouraged by what I've been seeing in him.

Peter is going through some angry days at school still and really doesn't like going to school anymore. Luckily he has an awesome teacher who is just as determined as we are to find out why. I have a sneaking suspicion that its the rigidity in thinking that we are seeing at play here.

Joelene has blossomed so much in the last couple of weeks and I really hope we continue with this upward trend. She's been so helpful around the house and the constant stealing and lying has definitely decreased. I think the collaborative problem solving technique is working with her.

Beth is doing okay. We are still in a holding pattern with her but she's really demonstrating amazing self control. We are still working on effective communication and this summer I plan to introduce gardening to her and see if getting her out in nature doing something she's shown interest in will help her center herself. I'm glad I didn't panic and medicate her a few months ago when it got really bad.

All in all I'm incredibly excited to see how much progress we've made with the kids without medication. I'm definitely not knocking medication. I know in some cases its very necessary but in our life so far we have made drastic parenting changes and have used therapy, social stories, patience, and lifestyle changes and so far this seems to be working. It may not always work, but I'll take the positives when I can get them...lol.

Winter...

... needs to go away.

Seriously. The blizzard was cool, its been awhile since we've had that much snow at once and the kids thought it was amazing! Aside from that, winter has been cold and uncaring this year.

Joelene's been sick on and off for what seems like weeks now. Nothing major, just annoying. The boys and I now have a massive cold. I'm drowning in school work for 5 classes and 2 of those are accelerated 7 week classes so I've literally barely had time to breathe. Add to that Peter's "angry" meltdowns and Beth's spikes in anxiety over yet another project at school (this would be project number 3... the anxiety is getting worse with each project) and the boys' sudden and unexplained fear of dogs we've owned for a year or more... yeah its been crazy.

I've only made it out of the house for quick store runs, my husband's weekly appointment, or the inevitable runs I have to make to the school every couple of weeks for Beth since November. My own health is iffy mostly because of stress coming at me from all directions.

So I started simplifying. I am making an active effort to stretch every hour. I've damn near tripled my water intake. I've simplified my nightly prayers/blessings because it was taking over 40 minutes a night to get through what I wanted to and I don't sleep all that much as it is so I needed a new game plan there. I like the simplified format better and nothing really had to be cut down.

I've been spending some time inbetween school work researching ways to cut expenses. I'm going to grow our vegetables this summer, we're going to eat very light this summer and focus on hitting sales to stock our freezers for the winter, and we're going to slim down birthdays and Christmas to fun but financially responsible.

I really need the spring to come back so I can get outside. I really feel better overall, and so do the kids, when we're outside. The girls are much more stable in mood, temperament  and mental health when they can spend most of the day riding bikes and playing in the yard. We all benefit hugely from being out in the sun!

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.

Busy...

Its been longer than I would have liked since my last post. I've had a ton of ideas but forgot them by the time I made it back here. Then I'd sit here and draw a blank about what I wanted to write. A little bit like I'm doing now. I had great ideas as I was falling asleep last night and now I just don't have much of anything, but I promised myself I'd write today.

With me, that means I'm going to ramble. When I ramble the posts go all over the place but truthfully those are the ones I find most helpful and insightful to myself later on and as much as I love the people who read what I write in the end I actually do it for myself mostly. 

What's on my mind right now? I'm seriously considering the Galaxy III over the iPhone 5. I know, sounds expensive but with my upgrade plus the trade in value of my current phone either way it won't be expensive at all. And I can't upgrade until July, but I like to have a well thought out plan before the actual event takes place. The problem is this plan is giving me a headache because I can't decide. Which is exactly why I start now and don't wait until July. 

Oddly enough, its behaviors like that one that have caught my attention lately. I need 6 months to choose how to use my cell phone upgrade. I need a month's notice before school meetings. I need two semesters of my classes planned out at a time. This isn't for scheduling reasons, this is merely for emotional preparedness. I want to be social and be involved in social situations but social situations exhaust and frustrate me. I don't even try family functions anymore. One of the best things that has happened to me is "S" because she doesn't really give me an option about when I'm attending birthday parties. 

Why bother mentioning this? Because three of my children are the exact same way and two of them have some type of ASD. Now I'm not trying to say I have an ASD. At this point in my life it wouldn't matter if I did or didn't, but what I'm trying to say is, I understand better than I ever realized I did how these situations feel for them. Its been pretty enlightening.

Ummm what else?

Oh! I solved the baffling pasta issue with Peter. Peter would eat some kinds of pasta but not others even when prepared exactly the same, or some types he'd eat prepared one way he wouldn't touch prepared another. It turns out that it has to be totally smooth elbow pasta. If there are ridges or it is otherwise shaped he can't stand the feel of it on his tongue. I have no idea why but I find this fascinating. Home made macaroni and cheese simply isn't a tolerable option. It has to be boxed macaroni and cheese but the texture is so different that I don't know why I didn't see this earlier.

Lucretia McEvil thinks she has an evil soul. Or she did yesterday. Yesterday she was pretty much a jerk. To everyone who didn't give her exactly what she wanted when she wanted it. Then ALL the sudden.... she wasn't a jerk anymore. She has this awesome "flip of a switch" thing going on. So far today she's been great, though so I will definitely give her that!

Pooh Bear came home from school deathly ill on Friday. You know, I may be prone to some exaggeration.  Anyways, she was sick at school and I had to go get her. She complained a lot about her head hurting and there's been a massive stomach bug going around so I figured she had the bug. What we ended up dealing with seemed more like a migraine than a bug but we actually saw some real catatonic episodes and absolute disorganized thinking which was a bit scary, I won't lie. There has been no more catatonic episodes since Friday night so I believe the catatonia was brought on by the vomiting but its something we are absolutely keeping an eye on.

And that covers everyone for now! 

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Positivity... Part 2

According to spell check, I made up the word positivity. Either that or I butchered the spelling so badly that spell check has no idea what I'm trying to say. I like it, so I'm keeping it. That solves that issue...lol.

I follow quite a few blogs on a regular basis. Craft blogs, autism blogs, and mental health blogs... and that's only a few examples. What I've noticed about a lot of them is that they tend to focus on how hard things are. Let me make something absolutely clear before I continue here. Things are hard. So incredibly hard sometimes. The hard parts have to be shown, those parts are so important in order for people to understand what it is truly like to live the life we do. I value those blogs, those raw and incredible blogs, very highly.

That being said, I don't really have many times here where things are that hard. We don't need crisis intervention. We don't need psych hospitals, residential treatment centers, medication cocktails, or restraints. My children don't have many moments of violence or aggression (those moments do happen, just not often), they have never had any active suicide attempts (a LOT of talking about it, never attempted), and Beth has never been so lost in her psychosis that we couldn't reach her. I consider these things blessings but I do recognize that its very possible that we are living on borrowed time with these things. I take each day as it comes.

Two of my children do have regular self-injurious behaviors. One has near paralyzing bouts of anxiety. Three of them have sensory issues so badly that even basic normal activities have to have back up plans. Occasionally Beth's hallucinations and paranoia will get so bad that she will literally be unable to shower by herself. She will stand there under the water and just sob that she can't and that she forgot. Those are just a few small examples.

So yes, things can get hard here too. So many blogs cover the hard times though that I am going to focus more on our successes. I will touch on our hard times. I will touch on my sadness sometimes because I am human and sometimes I feel hurt or sad too. Most of all though, I'm going to remain positive. I'm going to show our silver lining. Because as this new year approaches I am going to do everything in my power to remain positive. I want to see if blogging regularly, and in a positive light (at least balanced with some rough times) helps me stay in the right mindset to correct some of my health problems. 

So bring it on New Year. I think I might actually be ready this year!  

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.

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!

Christmas

Christmas has come... and is now going....

It proved to be a rollercoaster holiday emotionally, which was quite fitting since 2012 in general was a rollercoaster year emotionally. I'm happy to say that I've made great stride in learning to process emotions and reach out to people who can help me process emotions when I get stuck. Despite the hurts I've felt over the last day or so, I feel better and stronger for how I handled them. Can't really ask for better than that.

That being said, the most important part of this holiday was that my children be happy. And happy they were... (when they weren't overwhelmed and melting down, which did happen a time or two).

Had to skip pictures of Peter since he insisted on not wearing pants and I just don't think his underwear pictures really fit here...lol.

Its now 8:12pm. They are quiet. The boys and Joelene are asleep. Beth is quietly playing her video game and processing through the day. The dog ate some M&Ms. She seems fine. We are back to normalcy around here.

2012

2012 has been an intense year. A year I haven't really kept much, if any, written log of.

I wanted to. I knew I should... but I held back everytime I thought about it. I came up with a thousand different reasons why I shouldn't share our story. I still have some of those concerns but mostly I think I was just afraid of opening up. Going forward I want to combat that fear. I want to be open and keep a journal of our experiences.

I follow some blogs with some regularity. Some of people I communicate with, others because their story touches me. Some of them are careful to hide their children's names, or their locations... others share their locations and names with no issues. I probably should take more care to mask my children's identities but the truth is that this is the internet. Anyone who really wants to find out who they are is going to. And why someone would want to go through all that work really baffles me. Most of my readers already know that anyways... ya know, all 10 of you...lol.

So 2012....

We danced with child onset schizophrenia, anxiety, emerging personality disorders, autism, and ADHD. We struggled through speech delays, sensory issues, cognitive delays, and ongoing destructive behaviors. We struggled with self harm, aggression, and pathological lies.

But.... that didn't define us. That was not all we did.

We crochet owl hats, other hats, scarves, santa hats, and many failed projects...

We went to the beach.

We had play dates and formed bonds with friends who understood that we weren't going to be "typical".

We started to form bonds with each other in meaningful ways (we still have our moments, but I'll take the good when I can get it.)

We learned to ride bikes.

We got kittens!!

We sang with the school chorus.

We did so much more, as a family and separately. I went back to school, took an advocacy class, learned a lot from a few of the best friends a girl could possibly ask for, and learned not to expect anything more from someone than they are capable of giving. I know who will be there for me no matter what time, day or night, that I need them. Now I just need to learn how to ask for that help when I need it.

So wrapping up 2012 I find myself encouraged. The road will be rocky and hard but there is so much left to learn and that is really exciting!

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!

Spring vacation...

Yep. It's the official beginning of spring vacation here. Day 1 and we've already had one sobbing meltdown. No, it wasn't me.

This one was Joelene. Princess Peanut cried for about 30 minutes because she says she can't believe in God, the Easter bunny, or Santa Claus. She says she can't believe in anything she can't see. We had a long talk about love, wind, and other various things she believes in but can't see. We talked about faith and trust. I think she gets it now but she's only 6 so only time will tell.

Mr. Monkey is turning 2 next week. I can't believe my baby is turning 2. He's growing so much but still has some very strong sensory issues. We are working on that and I believe the autism specialist that is going to start working with Peter is going to check Xander out just to be sure.

Still waiting on the written eval from the Dr. K about Beth. Once I have that we can continue the battle with the school to get my girl what she needs.

I'm trying to figure out what we are going to do this week to keep my kidlets occupied and engaged. I think maybe we might try a walk to the park one of these days depending on how my ears feel. I have to have my ears drained again on Monday. Fun stuff!

I feel like writing...

...but have no idea where to start. Today has been an incredibly difficult day and yet I can't pinpoint why. Today there was a crushing weight on my shoulders. It was like an iron blanket that refused to be lifted. I could taste the stress and it was choking me. I was lost in my own anxiety about things I simply can't control.

And then Peter fell asleep on me. Snuggled up against me as close as he could. Slowly the blanket slipped off. I could breathe again. As my child snuggled against me suddenly everything weighing me down didn't mean a whole hell of a lot. I was reminded why I'm in this battle to start with.

On a totally separate note Beth was found eligible to test for placement in the gifted and talented program. It's definitely something to consider. I'll have to sleep on that one.

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.