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.

Jamie, Clara, Carolese, Mia, and Elizabeth

Who are these people?

They are people who live in my child's head. In the kitchen this morning she was having a conversation with "Mia". She was discussing with Mia how her day should go and what she'd like to do. Apparently Mia had some ideas too because she was telling Mia they would have to wait until after school to do the things Mia wanted to do. 

I asked her about Mia. Mia is a girl in her class at school. Mia liked Beth so much that she decided to move into Beth's head. Mia still lives with her parents and goes to school. Both "aspects" of Mia are real. Beth went on to describe Carolese who is another girl Beth knows from school. Same situation. Clara is from the Nutcracker ballet. Clara moved in also. Beth said that both Clara in her head and Clara in the Nutcracker are real. The problem with that is that Clara is a make believe character in both situations.

Jamie. We've heard about Jamie before. When Beth was three years old she talked about Jamie a lot. She didn't really have any pretend play skills, but we figured Jamie was an imaginary friend and left it at that. We assumed Jamie went away when we didn't hear more about her, but apparently Jamie never left. Elizabeth is her, but not her. 

Confused yet?

Yeah, me too.

I asked a lot of questions. Gently. When she became defensive I assure her that I believe her and just want to understand. She was open, she answered as best she could and explained as best she could. She talked about how she doesnt want her teacher or her friends to know and I told her she doesn't have to tell them. I reminded her that I love her more than life and would always believe her and she can tell me, daddy, and grammy anything. 

She took all that in. Silently. And then...

"Mama, you know my brain works differently than everyone else's." 

Of course I knew that. That's kinda how I explained autism to her. I told her that.

"No Mommy, I mean my brain has advanced technology. Technology no one else has."

She wasn't able to explain that.

Soon after this her daddy woke up and she decided she was going to tell him about Mia, Clara, Jamie, Carolese, and Elizabeth.

Except she suddenly became silent.

"You tell him, Mama, I forgot."

I prompted without leading. She mumbled out their names. We talked about how we will always believe her and support her. She started dancing around like a weight had been lifted off of her and went off to school. 

Without her backpack.

Did she make it all up? Was her imagination in overdrive? Does that even matter? Regardless... it became in-your-face clear this morning that she's unable to separate pretend from real (I quizzed her using book characters and TV characters).

Elizabeth

Beth started school on 9/7. Ever since then the world has crashed every day at 3:50 pm. She's angry, frustrated, emotional, and mean. I know that what we are seeing is a window to how she feels inside, and it breaks my heart. Literally.

The first day of school was awful for her. I knew it would be. We gave her the social story they created for her and she had already visited the school. Her new teacher even mailed her a letter before school started. I was hoping this would be enough. It wasn't.

Somewhere along the lines communication failed. I had no idea I was supposed to send her with a snack. I don't have any kids older than her and I swear the school never sent anything. It would have been nice if they did because then we could have avoided the complete melt-down she had when she got home because everyone had a snack but her. We made it through that and she now has her choice of snacks and juice boxes to choose from every morning.

I was hoping that was it.

We really weren't that lucky. Day 2 was a Wednesday. I took Jolene to karate... my sister waited for Beth at the bus stop and brought Beth to karate after she had changed. When Beth got there she was very upset. She said someone in the lunchroom made her sit in another spot away from her class. She was getting increasingly upset as she told me that she got lost and a girl had to bring her back to her class because her teacher couldn't find her. Once I got the story out of her and calmed her down it was time for her karate class, so I sent her in and hoped for the best. Her karate instructors are fantastic with the kids, so I knew she was in good hands and I watched her closely. She did wonderfully.... until the very end. The class went outside and started a "stranger danger" drill. Beth has done this drill before, so I decided instead of waiting with her for her turn I would go to the other side of the car they had staged and was going to try and get pictures with my cell phone. And that's when it happened.

She hadn't really been paying attention. I think her emotional resources were spent for the day and she was just going through the movements. All of the sudden she decided it was her turn. A few of the other kids showed her where the line was and this was her undoing. She started crying and yelling about not wanting to do it any more. In a matter of seconds one of her fantastic teachers was right beside her talking her through it. By the time I got back around everyone and to her she was calm and just wanted to go home. The kids came to apologize and we went home.

I did everything I could not cry on the way home. I was overwhelmed entirely and had no idea how to deal with the school situation. When we got home I wrote a letter to her teacher.... which returned to me unread the next afternoon. I think this is about the time where I realized that we may not be dealing with people who understand special needs as well as I had hoped they would. I admit to being really lost. JD and I went to the IEP meeting, we saw the evals, we heard the discussions.... we got a copy in the mail and read it over and over again. Signed and sent back the acceptance slip... and then had no idea what happened next. I had, wrongly, assumed that we would get some kind of communication. Like maybe a chance to meet her teacher ahead of time... something. So I sent her to school on blind faith without fully knowing what to expect.
That was my fault. I should have made someone explain this to me in layman's terms. It was my fault, but my little one is paying for it.

So the following morning I made sure Beth understood that there was a note for her teacher in her folder. My cell phone rang right around lunch time and it was her teacher. She expressed complete confusion over the story I had written her in my note. She had no idea that Beth had been moved in the lunchroom, or that Beth had gotten lost. She said she investigated a little bit and found that Beth had been moved from her normal table because she got up to throw something away without permission. That placed Beth in a different line to go back to the classroom than she was used to. She said all of the 1st grade classrooms are in the same hall so Beth was never truly lost.  I know the teacher heard my sigh in response. I don't know what made me ask, but I asked the teacher to explain exactly what makes up Beth's classroom environment. She told me that it is a general education classroom (I had a feeling, but the IEP was vague), that she has a handbook on PDD,and that if she didn't have paperwork on Beth she never would have guessed that she is on the autism spectrum.

I know the teacher didn't see this as a big deal. I know, from the way our conversation went, that she can't figure out why this simple incident was enough to cause me to write in about. She probably already has me on a list of problem parents, but in all honesty this is a problem. A real problem. Elizabeth had no idea what was happening or why. None of the events that seemed so simple to the teacher and the lunch aids made any sense to her. She was purposely removed from a place she felt safe and placed somewhere else for reasons she was unable to explain.

The teacher praised Beth's coping skills because Beth didn't seem upset about it and didn't tell the teacher what had happened. This, to me, is not coping. This was her bottling it up and letting it fester all day until she was safe with her family, her comfort zone.

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....