New blog

I'm just not overly happy here on blogger.... so I'm moving. Care to follow?



http://amethystcoloredglasses.wordpress.com/2013/06/22/bullying/




If you don't follow, I will miss you very much!

Where do we go from here?

This is a question I run into frequently... either I'm asking it, or someone is asking it of me.

When Beth (and later on, Peter) was diagnosed with an autism spectrum disorder there were plenty of places to go. There's the Autism Resource Center, there are social groups, there are activities, and the online communities for parents of autistic (or children with autism*) children are loud, active, and engaging. They are warm and inviting as long as you manage to stay away from the drama about semantics (autistic vs. with autism).

Truthfully we never really fit there though. I never went to visit the Autism Resource Center (no, really.) I didn't see the point since a lot of Beth's behaviors have never actually fit autism. I didn't want to go somewhere else where we were outcasts. If I felt like being an outcast I could just take her to the grocery store or to a family function. I didn't need to go all the way to the ARC for that.  Years down the road when Peter was diagnosed I figured I had survived this long without it why bother now. You know, my attitude kinda sucked.

When Beth was diagnosed with child onset schizophrenia last year I started seeking out resources for parents of children with childhood mental illness (or parents of mentally ill children*) and discovered that the area I live in has nothing. It straight out doesn't exist for us here. That was a painful realization. There was no one to reach out to on a personal level. Sure, we have our therapists and services but that is almost never the same as coming across another parent who can tell you they've been there and have survived it. I managed to find a few online resources mainly geared toward medication and was ostracized and bashed for refusing to medicate my girl. I did finally find a support group online that is very warm and accepting and parents come from all walks of life and all sides of the great medication debate, but there's still nothing I can find locally.

Earlier this year I took a Human Services class and one of our projects was to come up with a community resource guide. My group handled resources for children. I had a few saved and the others in my group struggled to come up with anything different. Out of curiosity I started looking in other parts of the state  and discovered that we are flanked on both sides by fairly decent services. The problem is that travel time makes those services, support groups, classes, training, and events inconvenient for our families here.

I was chatting with a friend last week who lives closer to Boston and she was discussing services in her area. We were talking about the gross lack of parental support in this area and she was genuinely confused and concerned about the parents here who are left with no support. She had mentioned taking a class called NAMI Basics. I browsed NAMI's website and discovered that I can take this class in the next town over! I'm so excited about this! I've already emailed the instructor who said she was going to forward me the application next week. Its so exciting to see NAMI active in this area!

I also have contacted Family Ties to see about volunteering with their Parent Partner Program. I am waiting on a training to become available with them. They have one tomorrow but it runs at the same time as Beth's concert and I absolutely won't miss that concert so I have to wait for the next one. Hopefully I can start finding ways to bring more services to this area!

Simple...

I like simple. Everyone likes things to be simple, right? So last year when B said "you need to make your own laundry soap" I laughed at her. That's not simple.... simple is going to the store and buying it already made! Simple is not thinking about how much it costs per load, the ingredients, and things like that. Right?

Today, I made my own laundry soap. And it was NOT simple. It wasn't really complicated though either. Truthfully I made it far more complicated than it needed to be. 

So I started with this :

Not all that turned into laundry soap, but you get the idea.

And I ended with this :

I do NOT want to hear one word about the size of my Fels Naptha, H

Between B and H I was told 2 cups of washing soda, 2 cups of Borax, 2 bars of Fels Naptha, and 1/2 cup of Oxi-Clean. Simple enough, right? Somehow I destroyed the Fels Naptha..... hopefully the next batch is MUCH easier.

That being said, it smells AWESOME! 

I was so impressed that I decided to make my own Febreeze. It called for 2 tbsp of baking soda and 1/8 cup of fabric softener and then fill the spray bottle up with water. Simple, right?

I guess so, if your spray bottle works. Mine doesn't seem to want to. But, it smells great! 

So folks, thats been my day so far. 

I was just about to hit post when I realized that the washer had stopped. So I went to check and my laundry smells clean and very fresh! Yay! The soap didn't seem to dissolve all of the way so I have it rinsing and spinning again... there are also two blankets in that load. 

Smile time!

Pink is seriously not my color.

But every time I change something I end up further from where I want to be. I just spent hours googling and reading about blogs, templates, RSS feeds, and a bunch of other things... and I don't know that I retained any of it!

In the end I suppose it doesn't matter. I'm not really writing this blog because its going to attract attention, although truthfully a little attention never hurt anyone's feelings   :-)

Right now I want to show you something awesome!

                                               See my boys? Together, smiling, and happy!

(Behind Peter, on the left side of the picture is my yarn stash... its seriously getting out of control!)


That's all for tonight... just wanted you to smile!

Broken

This hurts and makes me angry. A young man's life was taken away, violently, by his mother and his caregiver. There's nothing that can make the shock any less, or the heartbreak any easier. Nothing can take the horror from the words and mental images. I will never say I agree with what she did.

That being said there are a few things in this article that have to be looked at seriously.


"Spourdalakis had been featured in several Internet videos earlier this year decrying the quality of medical care her son received and the length of time he had been placed in restraints while hospitalized. Alex also was seen in another video as an autism activist asked for help in finding a setting where the teen could be treated without being restrained."

"The teen’s murder followed a string of recent medical problems that saw him repeatedly hospitalized — a situation his 50-year-old mother believed had worsened the autism that already had left him unable to speak and sometimes required him to be physically restrained."

' “So they planned to kill the victim in order to end his perceived suffering,” Assistant State’s Attorney Maureen O’Brien said in court.'

"Their suicide pact never succeeded: Both women took drug overdoses, then locked themselves in the bedroom with the slain teenager. They were found semi-conscious inside the second-floor apartment on Sunday afternoon when Alex’s father and uncle came to check on the teen, prosecutors said as the women appeared in court to face first-degree murder charges".

'A local autism activist who had discussed the teen’s condition earlier this year with Dorothy Spourdalakis said she was stunned by the murder charges.“She seemed to me a caring, loving mother who only wanted what was appropriate for her son. I’m still in shock,” said Mary Kay Betz, executive director of the Autism Society of Illinois.'



These are not necessarily in order. Trust me, I can almost see you wondering what my point is. My point is that she SOUGHT HELP. Before it ever hit this point, she sought help. She didn't suddenly out of the blue grab a knife and butcher her child. She, in her own mind, believed she was saving him because nothing else helped. 

She talked to the executive director of the Autism Society of Illinois. She had him hospitalized. She was featured in videos taking about how bad the care was, how he had been placed in restraints, and was seen asking for more help. 

I've seen posts for the last two days now talking about how she should have asked for help. Directing people to seek help if they feel they have come to that point and I keep getting stuck on the fact that she ASKED for help. Hell, I asked for help all those years ago. You can't get help where there is none.

Does this excuse her? Absolutely not. It doesn't excuse us either. If we want this to stop, we need to provide the services and support families need. 

My brain and my heart are both broken right now. Rest in peace Alex Spourdalakis. I'm so sorry we failed your family.








The quotes above came from this article:
http://www.suntimes.com/news/crime/20696224-418/prosecutors-mother-and-caregiver-planned-for-week-to-kill-autistic-teen.html

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).