Medical Trauma in Infants and Young Children

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!

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.

Another Cycle?

Just a quick observation for whatever it's worth. Almost a year ago, I blogged about my theory of Culley's sensory/autism/who-knows-what symptoms cycling. Looking back to about the time Culley's hearing loss became noticeable, he's had periods of total clarity where he acts just like an engaged, easy-going and polite little boy. Between those periods, which usually last for several months, he's had periods for the same length of time where his behavior changes to that of a child with autism or sensory processing disorder. This pattern is evident in my previous blogs.  In the beginning, the down cycles were downright scary. He'd become distant and withdrawn. He barely made eye contact and he'd lose the language he'd developed in the previous month or two. He would "sensory seek" by standing on his head and grinding his teeth. He'd also become irritable and contrary...just not himself. His last "down cycle" as I'll call it was last Spring, see the blog about neurofeedback.  Even though I'd noticed the cycle by then, I was too afraid to ride it out and just wait for the "up cycle". As was my usual response, I ran to his occupational therapist asking for the next new treatment we hadn't tried yet. The good news is that each consecutive down cycle is less severe than the one before. For example, he appears to be going into another one. For the past two weeks or so, he's been sensory seeking by putting things in his mouth, and playing with his head on the floor. He's a little grumpy, very nidgy, and easily distracted. He doesn't lose language like he used to, but his thoughts don't flow into words as easily as they did just a month ago. This time, however, I'm not going to throw him back into OT, looking for a fix. His team at school is seeing increased sensory seeking so they've been helping by giving him something appropriate to chew on and having a teacher sit near him at circle to encourage him to keep his hands to himself. With some similar small interventions at home (including getting stricter about limiting his dairy intake), I'm hoping that I'll have the faith to wait it out and see if Culley can turn this cycle around by himself. We'll see how it goes!

Ski School Success!

Will he be able to hear his instructor? Will she know how to get his helmet over his processors? Will he be able to hear well enough to socialize with the other kids? Will his instructor understand how to use the FM? Maybe we shouldn't put him in ski school this year.

Despite his mom being a Nervous Nelly, Culley did great at ski school! His first morning of ski school started with a hurried lesson on the FM system and instructions on how to manage his helmet and processors, while other cold and nervous parents waited their turn to check their kids in. The temperature was about five degrees and most of the kids, being in the 4-5 year-old range, were already crying. I knocked on Culley's helmet and said good-bye. He responded nonchalantly with a mittened wave and "Bye, Mom." Then I left. When I came back to get him, almost 6 hours later, a different instructor was with his group. He reported that Culley did great and gave me back the FM, it wasn't on. Hmm...

Culley turned 5!!

Given the fact that I was not confident at all that the first instructor really understood how to use the FM, I was sure the second one didn't get it at all. Hearing this, Culley's speech therapist in Denver, advised against using the FM at all at ski school. The next week, the first instructor was back and Culley's class had been down-sized to just three kids. One was a friend's kid so he already knew him quite well and the other was a girl with whom he became great friends...for the next three Sundays at least. His instructor said they were so cute, holding hands and hugging in the lodge, that people were taking pictures of them:)

By the end of the month, all of my questions were answered:
Q: Could he hear his instructor?
A: Well enough.

Q: Could she get his helmet on without knocking his processors off?
A: I guess they figured it out.

Q: Would he be able to hear well enough to socialize with the other kids?
A: He socialized well enough to get himself a girlfriend!

Q: Would his instructor understand how to use the FM system?
A: No, probably not. Turns out he didn't need it anyway.

Not only did Culley have a great time at ski school, he also learned to ski!!

It's Getting Better all the Time

So I changed the title of the blog back to the original title. I guess I'm feeling optimistic these days. My little guy is just blossoming! He loves being back in his "old preschool". He attended Marion's Way preschool for kids with hearing loss again this summer, which he called his new preschool or Denver preschool. This summer the staff at Marion's Way Preschool encouraged him to take on a leadership role, having been in the same program last year. Then, just as planned, when he returned to his mainstream preschool this year, he easily assumed the same role. Now when we see his classmates outside of school he greets them openly and enthusiastically. Kids who aren't as socially developed will have to be prompted to say hello as he used to have to be. His language is exploding and his speech therapist only pulls him out once a week now. She feels that since he's so engaged in the classroom, it's more beneficial for him to stay there with his classmates. He's still got the nidgies when he comes home but I'm told he behaves very well at school. We discontinued all occupational therapy this summer since we were so busy commuting to preschool. For now, we're holding off on resuming OT since it wasn't helping anymore.

It's obvious that his understanding of the world around him and his ability to verbalize how he feels about it is progressing quickly. He's been complaining that he wants to be older, mostly since his brother is now playing soccer and he feels left out. Though he admittedly does not want to play soccer but favors baseball instead. Along those lines, he's said several times in the last month that he wants to be older so he can hear with his ears. The first couple times I told him that he'll still need his processors to hear when he gets older but after he insisted, I finally admitted to him that maybe he will use his ears to hear someday.

Neurofeedback Not a Total Bust

After another three or four neurofeedback sessions, they did seem to have a lasting positive effect on Culley. We had to go for 2 weeks between session during Spring Break since our therapist was out of town and I was nervous that he would regress. However, during the latter half of that two week period it occurred to me that Culley's "nidging" behaviors had pretty much stopped! He did have a mild but persistent stomach bug at the time so you're always wondering what other factors may have been at play. So when we resume neurofeedback, we stayed with the same protocol since it had been working so well. But alas, those two weeks marked the peak of his now pretty regular cycle and he's been regressing ever since. He's not back to where he was in February but I'm fighting the panic that he will get there if I don't do something.

I read a blog today by a person who has autism. In it he says that cycling is a normal part of autism and that there is nothing you can do but be patient and wait for the cycle to come back around. However, he also says that cycles do not happen regularly or happen for months at a time but Culley's definitely do. He's cycled 4 times since he's been diagnosed and every time, I intervene with a new therapy and the cycle seems to turn around with a week or two of beginning it (and it must be new - not one that he's done before). So do I sit back and watch him regress while I wait for the cycle to complete? I don't think I can do it.

The good news in this case is that our summer is starting which means lots of new things. Unlike most autistics, Culley seems to do well with new things. First a big road trip to Ohio, then his summer preschool starts which coincided last year with the upswing of a very long downward cycle. Out of desperation, I'm looking into the "autism diet" which is so daunting especially for a kid who is a picky eater to begin with. Funny that we tried to eliminate dairy (which is half of the "autism diet") at this same point last year. Again a desperate move in response to another cycle. And interestingly it also coincided with that same upswing that I attributed to the preschool.  Maybe it did have something to do with the diet, though I gave up on it after a month and he continued to improve until winter.

Maybe I'll never figure it out!?

I'm trying a new theory

So the neurofeedback didn't work any magic this time. Culley came off the school bus grumpily demanding to be carried home, while looking down at his feet. Not a good sign. The irritability and nidging continued for the rest of the night. So, I decided to take matters into my own hands. The next morning, he woke up and came into our bed unusually early (neurofeedback can mess with their sleep) maybe because he has a cold. He took my hand and said "C'mon Mama, let's go". That is a good sign... Culley is in the building. So I dragged myself out of bed and followed him to his room where he started playing with his cars while standing on his head - that's not a good sign...Culley is trying to leave the building. I immediately got down on the floor and asked him if I could play. He sat up happily and replied "yes" and handed me a car. For the next 20 minutes I kept him engaged by coming up with all sorts of play scenarios. When Finn woke up he came in and joined the play. Yes, this was all before 7am and without any coffee on board! Go Mom!

This is how the morning went. I put in a lot of effort keeping the daily routine going (eating breakfast, getting dressed, etc...) while interjecting play that was stimulating and appealing to Culley. I could start the play and be really engaged and eventually Finn would join in and they would take over. Then I was free to make breakfast (and coffee!), pack lunches, and get dressed myself. Basically - no downtime for him to withdraw. There were a couple times when I heard the dreaded monotone verbalizing start, indicating he was going to the dark side. I immediately stopped what I was doing, got down and looked him in the eye and asked him to stop. Then redirected him to a sensory activity disguised as a job, "Can you bounce this ball down the hall and help me feed Drake?" It worked like a charm! I felt so proud of myself for finding a way to keep Culley in the real world if only for one morning.

Previously, I allowed him to go into the zone and make his noises as long as he wasn't hurting or bothering anyone. However, it seems that once he's in "the zone" he can't stop himself from making bad decisions about what is appropriate contact. Maybe if I can keep him out of the zone, by not allowing him to make the noises and redirecting him, he'll stop wanting to be there so much.

According to brain science research (The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science (Null) by Norman Doidge) , the more a person links certain thoughts with certain actions (feeling stress and smoking a cigarette, for instance) the stronger the neuron connections become, making it harder and harder to stop the connection. For Culley, he must be having a thought or feeling that causes him to want to leave reality. If he continually does just that in response to the thought or feeling, then it becomes automatic and a much harder cycle to break. However, if I can help redirect him when he's feeling that way, then perhaps we can weaken or even break that connection!
Hey, at least it makes me feel like I'm doing something to help him.