At the risk of being overly optimistic, I'm going to say I think we found our diagnosis!
Post Traumatic Stress Syndrome (PTSD)
My husband and I knew we had symptoms of it after Culley's great illness, so why wouldn't he?
After such a crappy kindergarten experience, I was desperate, yet again, to find a way to help Culley. It had been a whole year since he was last regulated. During the summer before kindergarten he was acting like a "normal" kid. He took our moving to a new house and a new town all in stride. He was happy and excited and lucid. He and his brother loved the new house and played happily all summer long. He was so happy to start kindergarten but within a couple weeks of the new school year, he started to come undone (see my previous post, The Problems with Kindergarten).
In June, I Googled, "child therapist in my town" and there she was. Play therapy is her method. The list of issues for which she sees kids is a mile long but every one of Culley's so-called diagnoses was on the list. I went to my meeting with her prepared to give her Culley's life story and to try to explain the myriad of his atypical attributes. To my amazement, it was as if she already knew. She began our meeting explaining (with a whiteboard, loved her already!!) the brain science behind regulation/disregulation, sensory input, processing and how it affects behavior. She explained how and why kids have problems with it (trauma being one of the reasons) and how play therapy helps. In her explanation, she had described Culley and his issues to a tee - better than anyone ever had. I told her that, then I told her about his history. It made complete sense to her. She explained that his illness was a medical trauma and his behavior is typical for a child recovering from trauma (PTSD).
She started by explaining that we all have implicit and explicit memories. Implicit memories are those we were too young to remember explicitly or those in our lives that we don't have to or sometimes can't recall voluntarily. Implicit memories are carried in our brains and affect our behavior every day. Most of us have relatively similar experiences, therefore relatively similar memories, and therefore relatively similar behavior. When something very unusual happens to someone - as in the case of traumatic events, implicit memories are made and atypical behaviors develop. This is putting it all very simplistically of course. I could go on for pages and if anyone is interested I will. But for now I just want to get this information out there in case there are any other parents dealing with what we've been going through.
Over the past several months, I've read a lot about PTSD and particularly how it relates to medical trauma and infants/young children. The specific topic of medical trauma in babies is a very new topic and not one that has much documentation. When I expressed my frustration to Culley's therapist about how long it's taken to get this diagnosis and how many doctors and therapists he's seen who refused to acknowledge a connection between his medical history and his current symptoms, she wasn't surprised. She told me that just last year, she attended a child psychology conference during which an expert in the field was giving a lecture. He stated that they're still unsure of the psychological affect that medical trauma has on babies and young children. She said that she and her "cronies" exchanged knowing glances, recognizing that they're the pioneers of their field.
I would recommend the book, The Whole Brain Child, by Daniel J. Siegel and Tina Payne Bryson, to any parent who thinks their child may be suffering from PTSD. It does a wonderful job of explaining how a child's brain works in general. The chapter on trauma illustrates how atypical behaviors develop after traumatic events. Even though there wasn't much if anything about babies experiencing trauma, I could still see parallels in the behaviors described and Culley's behaviors after his illness.
More to come about how play therapy is helping!
Thursday, December 11, 2014
The Problems with Kindergarten
So Kindergarten did not go great. Culley proved himself to be academically fit for mainstream school but he struggled from a social perspective. He had trouble connecting with his classmates, and teacher. I could tell he wasn't himself right away and his inner tension was building. His teacher and the rest of his team kept reassuring me that he was doing "fine", which I've come to learn is code for "he's not causing us any trouble".
Well, suddenly in March, I was getting called to the principal's office on a weekly basis, "Culley made a gun with his fingers!!" "Culley was kicking at the other children!" "Culley hit a classmate!" "Culley yelled at his teacher!" The principal was pointing the finger at me, wanting to know what was going on with him?! Good question. Maybe you should've listened to me in October when I told you something wasn't right. He was in crisis and nobody knew how to help him. His teacher and the principal certainly weren't going to take any responsibility for his behavior. In a private meeting the with the principal, she counselled me about "asking nicely" when I advocated for my child and that being aggressive wasn't going to get me what I wanted. She scolded be for not being grateful enough to his teacher for "bending over backwards" for Culley. She also warned me that I shouldn't expect the same preferential treatment for him in first grade. I was flabbergasted by her audacity but I had to shelve those feelings for time being. (I later learned that she'd become threatened and bristled when a mentor from the state department of education had come to the school the month before to consult with the staff on how they could improve their strategies for educating children with hearing loss. The mentor was not kindly received by the principal or the teacher).
The solution they came up with was to remove him from the situations that seem to cause him stress, which came down to free peer interaction time: the 30 minutes they all congregated in a huge room with little supervision and no directions other than to sit and wait before school started, lunch, and the bus ride home. Instead, during those times in school he was required to go the ILR room and we were encouraged to pick him up from school. I still don't know what ILR stands for but we called it "the quiet room". It's one where the kids, mostly special needs, who can't deal with the chaos go to interact and be supervised by an adult who is trained in Special Education. It did seem to immediately solve the problem and it was a nice alternative to the chaos of the other situations. I think most adults would prefer the solitude of the ILR to the chaos of the lunchroom. In the ILR room, they could play with toys and during lunch, the teacher would lead the 4 or 5 kids in interactive social activities. It was a relief to not have to deal with the stress of getting reprimanded by Lord Vader (as my husband and I now refer to the principal) and although Culley still wasn't exactly happy at school, at least he wasn't getting in "touble" anymore.
After about a month, his itinerant teacher of the deaf encouraged us to try to get him back into the "least restrictive environment" - that's EIP / IDEA lingo for requiring schools to help kids with special needs adapt to the same surroundings as their peers, rather than removing them from them. It was nearing the end of the school year and I dreaded another encounter with Vader but I bit the bullet and called another meeting with her. This time I made sure my husband was present so I'd have a witness in case she tried to bully me again. I "asked nicely" that they consider allowing Culley to choose, at least occasionally, whether he'd like to be with his peers or go the ILR room. I also suggested that the supervising adult keep a closer eye on him to help guide him on these decisions. My request was basically denied because he was doing so well with the new arrangement and that she didn't have the staff to give him the extra attention I was requesting.
We we all breathed a sigh of relief when the school year ended. I toured a very costly private school and my husband and I both met with the principal of the other public elementary school in town. The private school would have been a drastic change for him and our family, especially considering that Finn, being the rule-follower that he is, was perfectly happy under Lord Vader's reign. We got really good vibes from the principal of the other public school and it also has a wonderful reputation but she regretfully informed us that is was full.
We crossed our fingers and hoped for a better year next year.
Well, suddenly in March, I was getting called to the principal's office on a weekly basis, "Culley made a gun with his fingers!!" "Culley was kicking at the other children!" "Culley hit a classmate!" "Culley yelled at his teacher!" The principal was pointing the finger at me, wanting to know what was going on with him?! Good question. Maybe you should've listened to me in October when I told you something wasn't right. He was in crisis and nobody knew how to help him. His teacher and the principal certainly weren't going to take any responsibility for his behavior. In a private meeting the with the principal, she counselled me about "asking nicely" when I advocated for my child and that being aggressive wasn't going to get me what I wanted. She scolded be for not being grateful enough to his teacher for "bending over backwards" for Culley. She also warned me that I shouldn't expect the same preferential treatment for him in first grade. I was flabbergasted by her audacity but I had to shelve those feelings for time being. (I later learned that she'd become threatened and bristled when a mentor from the state department of education had come to the school the month before to consult with the staff on how they could improve their strategies for educating children with hearing loss. The mentor was not kindly received by the principal or the teacher).
The solution they came up with was to remove him from the situations that seem to cause him stress, which came down to free peer interaction time: the 30 minutes they all congregated in a huge room with little supervision and no directions other than to sit and wait before school started, lunch, and the bus ride home. Instead, during those times in school he was required to go the ILR room and we were encouraged to pick him up from school. I still don't know what ILR stands for but we called it "the quiet room". It's one where the kids, mostly special needs, who can't deal with the chaos go to interact and be supervised by an adult who is trained in Special Education. It did seem to immediately solve the problem and it was a nice alternative to the chaos of the other situations. I think most adults would prefer the solitude of the ILR to the chaos of the lunchroom. In the ILR room, they could play with toys and during lunch, the teacher would lead the 4 or 5 kids in interactive social activities. It was a relief to not have to deal with the stress of getting reprimanded by Lord Vader (as my husband and I now refer to the principal) and although Culley still wasn't exactly happy at school, at least he wasn't getting in "touble" anymore.
After about a month, his itinerant teacher of the deaf encouraged us to try to get him back into the "least restrictive environment" - that's EIP / IDEA lingo for requiring schools to help kids with special needs adapt to the same surroundings as their peers, rather than removing them from them. It was nearing the end of the school year and I dreaded another encounter with Vader but I bit the bullet and called another meeting with her. This time I made sure my husband was present so I'd have a witness in case she tried to bully me again. I "asked nicely" that they consider allowing Culley to choose, at least occasionally, whether he'd like to be with his peers or go the ILR room. I also suggested that the supervising adult keep a closer eye on him to help guide him on these decisions. My request was basically denied because he was doing so well with the new arrangement and that she didn't have the staff to give him the extra attention I was requesting.
We we all breathed a sigh of relief when the school year ended. I toured a very costly private school and my husband and I both met with the principal of the other public elementary school in town. The private school would have been a drastic change for him and our family, especially considering that Finn, being the rule-follower that he is, was perfectly happy under Lord Vader's reign. We got really good vibes from the principal of the other public school and it also has a wonderful reputation but she regretfully informed us that is was full.
We crossed our fingers and hoped for a better year next year.
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