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).

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!

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.

Um...

Its been so long since I've had a chance to get back here. I've been reading blogs and wishing for the same way with words other people seem to have....

Anyways, what have we been up to? Oh, a ton....

Beth had her visit with the neurologist. It was definitely interesting and she chose to talk about the voices and noise in her head with the neurologist. This woman was wonderful. She asked all the right questions and was able to keep Beth engaged and comfortable talking. The doctor was, understandably, disgusted with the IEP set in place by the school system. She said there's no way that IEP acceptably supports Beth's advanced and unique needs. The report came out with some recommendations that the neuro would like to see put in place for Beth. Now comes the challenge of getting a meeting scheduled to go over that.

After the last meeting everyone was so intent on being helpful but that was short lived. We still have been unsuccessful at getting permission for our therapist to observe at the school. We have had no luck so far getting a meeting scheduled to go over the results of the neuro evaluation. Its one dead end after another with this school district.

On another note, we did have a sleep deprived EEG done on her. She hated it and was miserable. She sobbed and cried and begged me to take her home. She asked for her therapist and if one of my best friends hadn't been with me I would have called the entire thing off and taken my child home. In the end the EEG came back normal. I'm relieved that its normal but two weeks later I still hate myself for putting her through that.

We started a therapeutic playgroup once a week lead by her therapist. This seems to have made a huge difference in how our weekends go. She's been calmer and much more focused. We've had less breakdowns and an overall more put together child. It really is awful that we had to give up karate but this play group means she gets to go somewhere relatively small, is able to be herself (voices and all if it happens), and she gets to learn about herself, feelings, and directed social interactions. I really feel good about this.

Speaking of the school system.... I'm totally disgusted with the entire system. Peter came home with a report card showing that he's behind. No kidding he's behind. Whats worse is that this seems to have surprised them. Maybe they forgot that he's autistic. At least they've stopped sending home printouts of the pull ups website showing me how to potty train. They really seem to think parents are morons.

Jolie got chased, knocked down, and hit with sticks at recess yesterday. Apparently supervision is optional? She's fine, and she did seek out an adult and tell but my thought is that she shouldn't have had to. The adults should have seen it long before the sticks got involved. The boys weren't trying to hurt her, it was a game that got out of hand, but seriously....

Aside from all of that we've all been sick. This winter seems to have been insane for colds and ear infections. Xander has severe double ear infections right now. Miserable baby  =(. On a good note he's developing beautifully. He's talking up a storm, engaging and interacting, and developing right on target. He's such a happy kid, generally.

Yesterday I learned that I was accepted to the community college and into the degree program I chose. Financial aid paperwork is done, I'm just waiting for it to be reviewed. I'm nervous and excited all at the same time.

Must go... I have a meeting with our therapist any minute now but I wanted to update   =)

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!

Disappointments

Probably one of the hardest lessons a child can learn is how to deal with disappointment.

Last night at karate both girls were gently told that they weren't ready to test. In the year we've been going to karate this has never happened to them... so needless to say they were shattered.

I wasn't there. I was at home considering getting ready for Peter's Open House (which I did not make it to) and nursing a massive migraine. My sister was there with them. I hate that I wasn't there... but I know I wasn't in a position where I could have handled that. I handled it as best I could by phone.

Let me be clear about something before I go on.
The karate studio made the right decision. I firmly believe that a child should not be promoted until they can handle the material. My children are no exception to that. At no point was anyone at the studio mean or harsh with my girls. They handled everything with the grace I have come to expect from them.

When I first talked to Beth on the phone she was hysterical and kept sobbing "I'm so upset, Mommy" and "I'll never get my confidence back, Mom". (The fact that she could, and did, express that pleased me to no end). I wasn't going to put her through this... we weren't going to quit karate but I was going to have Holly take them home but my brave girl didn't want to go home. She wanted to stay and I was leaving that choice totally in her lap. I think just knowing that I was going to support her decision either way helped her be strong.

I talked to Jolie on the phone too and although upset she was calm and she wanted to stay too. Holly had told me that she cried a lot but did calm down (it didn't hurt that one of the staff gave her Cheez-its). They decided to stay and one of our favorite teachers, Mr. B, worked with Beth for a little bit on her material.

When they got home I was greeted by two little girls with puffy and red eyes. I hugged them both tight and Beth was still disappointed but she understood. Jolie, on the other hand, lost it. She started sobbing and yelling, slamming doors, and swearing she was done with karate and never going back... just downright hysterical. I called the girls therapist to let her know what was going on and she asked me to have them draw a picture of how they were feeling about the events of the evening.

The results of that activity:

{image removed due to child's name on it}

Beth identified her emotion all by herself. She said she felt better after drawing it, which I know was part of the reason for the exercise. I know it was to help them get the emotion out. 

When I asked Jolie what feelings her picture was showing she said "mad". She isn't much better today. It's her 6th birthday and she's been complaining of a stomach ache. She said she's still sad and that her heart hurts because she just wants to be good at karate. She doesn't want to quit anymore.

My heart breaks for my babygirl. Beth handled this so well and I told her how proud I am of her for sharing her emotions, for talking it out, and for not giving up. She seemed to glow under my praise and I'm positive that helped her understand that it's perfectly alright to be upset and that we are here for her to help her through these hard moments in life.

Joelene is still struggling. She said she doesn't want to quit anymore, which is a good thing considering that I wasn't going to allow her to. I don't want my children thinking its alright to quit something when it gets hard or doesn't go the way you want it to. As hard as this is for them, and for me, I want them to remember that it hurt but they overcame it. I want them to be proud of the work they put into it and to know that they may not succeed on the first attempt at something but that they can succeed if they don't give up.

The girls are off to school now. 

Jolie's parting words as she walked out the door....

"Hopefully I don't get hurt today."

School has begun!

Pookie has started the 2nd grade!

And this time, Mommy is prepared. It's been a long while since I've updated so let me try and get it all down. We had a crazy summer. Pookie was entirely stressed most of the summer. She started eating paper, pinching herself, pinching and kicking Peanut and Bub, and went back to expressing desires to hurt herself.

We were at a total loss as to what to do so I talked to her pedi and the pedi put her on Prozac. I know, a tough choice. I struggled hard with the choice but I really feel like I made the right decision. In addition we added some home based therapy and ended up with a therapist that we all adore. She has since calmed down and is handling things so much better. She's adjusting and new social skills are emerging every day.

This past week she, for the first time, was able to pick up on non-verbal cues of nervousness coming from another child and apply an appropriate action to help with the nervousness. This happened at karate.... and although I missed it someone caught it on video. We now have video proof that the ability to pick up on non verbal cues and empathy are alive and well inside her. She's simply learning how to apply it.

Princess Peanut has started kindergarten... and she's loving it. She's going full day and sometimes comes home exhausted but has a blast! She already knows her letters so a lot of it is review so far, but she's loving it none the less.

Bub is turning 3 and entering the public school system soon. I'm really going to miss his ABA therapist. He's doing amazing.

Monkey is... well... Monkey...lol. Talking up a storm and walking everywhere!

My heathens....

A fun time was had by all!

Enjoy your weekend!

It all falls down....

I have been unbelievably quiet.

Yep, this is pretty uncharacteristic of me.

I'm ready to write again. So lets recap, shall we?

In November of last year, when I was semi-consistently blogging I was working full time, working on a college degree online full time, struggling to get Bubba's ABA therapy set up (while not letting the change in my routine kill me), working with a psychologist for Poohbear, looking for a pychologist for Bean, and keeping a close eye on Monkey.

Not a lot going on there....


I had been warned several times by close friends that I wouldn't be able to keep that pace long. It turned out to be true. I failed both classes, my back and neck started hurting with really no explanation, my blood sugar shot up over 400, and my blood pressure refused to leave the dangerously high range. I've been out of work since January and its looking like I may lose my job.

On the kid front not much has changed. Bubba gets his ABA about 15 hours a week (10 hours less than ideal but the state cut the budget... gotta be happy for what we can get). He also has group therapy twice a week, speech once every other week, and consults with OT and nutrition. Monkey is now seeing early intervention for some concerns about his expressive and receptive communication so we have that once a week now also.

We no longer have a decent therapist for Poohbear... and we never did find someone willing to work with  Bean.  We had Bean evaluated by the school system and although they saw quite a few concerning behaviors they were unable to accept her for early entry. She starts kindergarten in the fall.

I took Monkey to the doctor this morning for his well baby visit and it turns out that he has 2 bad ear infections that I somehow missed. Dr and I discussed Bubba's violent tendencies and she is calling UMASS to see if they have any suggestions on how to handle a very violent two year old.  Monkey has a specialist appt tomorrow for his hypospadias (at 8:30.... in Worcester..... morning traffic is going to be so bad).

So no, not much going on.

Lots to update!

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

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

Here's what I know...

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

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

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

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

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



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

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

=)

The world around us...

I've been doing a lot of reading lately... anything I can come across in regards to autism. I'm not new to parenting an autistic child. I am new, however, to parenting two children with global delays.

So anyways, I'm cruising the great world wide web and finding blogs written by mothers of autistic children. I find myself getting lost easily in their stories and tearing up at the challenging moments. I understand their words, their situations, and their emotions... and I absolutely envy the way they can tell their stories. These women all see to have a gift of words that I could never possess. They write with such eloquence and feeling. I almost feel like my writing is choppy and awful in comparison.

Okay with that out of my system...

I emailed Beth's teacher today.  I formally requested a meeting between her, myself, and my husband. As of this morning Beth could only name 2 children in her class of 22 and said they aren't always nice to her. She says she plays by herself at recess unless the other kids ask her to play... and sometimes she plays with the kindergartners. I learned all of this by simply asking if she enjoys recess. I try really hard not to put ideas in her head. I do my best to ask questions in a way that doesn't imply an answer. I really want to make sure that whatever is decided is what's best for her.

Last Wednesday my baby informed me that she wants to shoot herself in the face. I have no doubt that she knows exactly what that means, but no idea where she got the idea. We don't have guns in the house. She doesn't associate with anyone who does. We don't watch violent programs on TV and we definitely don't expose her to violence.  She hasn't said it since and really couldn't answer why she would want to do such a thing. I didn't push it. Maybe I should have... but she was so frustrated and hurting so badly already that I couldn't make myself push it.

Hopefully I will have this all down pat in time for Jolie and Peter....

Quick Rambling

1) Someone viewed my blog from Alaska... how cool is that? lol!


2) At some point today or tomorrow the books I ordered from Amazon... From Emotions to Advocacy and Wrightslaw about IEPs.... will be here. I fully intend to devour those books and write as much as I can here.

3) Peter turned 2! And is waving and seems to be interacting more! Awesomeness.... also going to blog about that in fully this week.

4) The school system is going to screen Jolie on 10/8! From there we find out what evals they are going to do and get that ball rolling.

Okay thats it for right now... working another 10 hours today..   =)

Small Update

Peter is cuddled up on my bed against the wall and its so freaking cute. Sometimes I'm really irritated that I started him co-sleeping... and other times I'm insanely selfish and thankful that he's snuggling against me when he's sleeping. His eval is next month... finally.




His night terrors are awful. We've had a calm few nights but they kill me. I'd give anything to stop them. His frustration level is so high at this point that he's all out violent. He bites, hits, pushes, screams, slams his head repeatedly into doors, hardwood floors, tables... anything really. Watching it is so insanely hard. I won't discipline him for his tantrums or violence. Not now anyways. He needs an outlet for his frustration and he doesn't seem to understand pain, feel pain, or care. I don't care if it makes me a bad parent... he can beat me up all he needs to, for the time being.



Once his eval is done next month hopefully he can start getting ABA therapy through EI. The only part of this that really bothers me is that the woman in charge of ABA is the supervisor, Jill. She's the one that we believe had DSS called on us in the first place back when Beth was getting services.



Tomorrow I need to call the school system about my Joelene. I need to see if I can get her evaluated through the schools to see if she can get services. I have a 7 page document here done by a psychologist a few months ago basically stating that she needs help ASAP. Its too long to go into now but I'm going to so I can at least have it all documented in one place.

Updates

It has been completely and overwhelmingly busy lately... but looks like it may be finally settling down. We still haven't had any luck on finding a provider for Jolie... and now Beth's doctor thinks she would benefit from a counselor but even less luck there. That's the one area I just can't seem to figure out.



Peter had his appointment in Worcester about his male issue... and got the all clear. Nothing at all wrong with his testicles, which is a good thing because I was really nervous about the possibility of testicular cancer. The pediatrician should seriously stop telling me anything so I have nothing to stress over....lol. We're mailing out his packet this week so we can get him seen by the neurologist and see what's up with him.

Joelene, part 2

So the lady called back today.... there's really nowhere around here who will consider taking on a child as a patient at the age of 4. There was one place that has a provider willing to consider it, but she's full right now so we're on a waiting list. I guess I'm going to have to do some networking myself and find out if I can come up with something.


Consult lady also gave me the name and number to a doctor known throughout the country for his work with pediatric bipolar. We are not at all sure that is what we are dealing with but it is one of a few possibilities. The first step is finding someone to do a full eval on her... but for another year or two that may be close to impossible because of her age.

I have already set up for the school system to eval her at the end of August/beginning of September.

Seriously, I need a file system. I also need a cell phone that works as an organizer. I need to find a better way to keep track of all this stuff for each kid. I have papers everywhere.... and I'm slowly losing my mind. There's so much I want and need to accomplish that I keep double booking appointments and guessing because I'm not always at home when I'm trying to deal with all of this stuff.

Joelene

Today's consultation bothered me more than helped. I have so much going on in my head that it's hard to really process it. The woman is positive that Jolie is ADHD or ADHD-Combination... not sure what that last one means but I intend to find out...lol.... but aside from that was next to no help. She's going to try and find a provider in our area to work with Joelene but said she doesn't feel confident about that since Jolie is only 4 and most providers (as in therapist... not med doctor) don't typically take on children this young.

Maybe I'll write more tomorrow.

Peter

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