Spina Bifida Association National Conference

I've been to a few conferences before, for journalism or donor relations in my past lives. When you go to a conference, you usually expect you are walking in with a fairly decent base of knowledge and that you will learn some tips, get some inspiration for how to do things better, and add to your understanding of the subject. That's how I went in to the SBA national conference, excited to learn more and meet people. Within the first hour, I was blown away to be learning about an area that I had never heard of before. I've been aggressively researching Spina Bifida for more than 4 years now, talked with hundreds of parents about their experiences, read list servs, message boards, and blogs, and I now work at a chapter. How is it possible that I've never heard of Executive Functioning? Especially since it explains so much about my child! I'll get back to that in a minute.

The kids and I met my parents in Cincinnati Sunday evening, and we headed over to the Opening Reception of the conference. We had a big group from Kentucky, and I was passing out my hand-made buttons that said, "I'm with SBAKentucky." :) I was so proud of those buttons, haha. Monday morning, Nate was to be at Kids Camp at 8:30, and it lasted until 5:30! I was really nervous about how he'd hold up--he's never been in any kind of all day program like that. At first, he was hesitant and didn't want me to leave him ... until we heard there was a rice table. It was like a big sand table filled with rice, and if you know Nate, you know that he feels all squishy and happy inside when he's running his hands through rice! After about 30 seconds, I was able to say, See ya, bye!

Nate LOVED Kids Camp! He asked to go back the next day! (He was going to go back anyway, but I expected him to protest.) A firefighter came to visit (Nate was a little afraid until she took off some of her gear), a zoo keeper brought animals (snake, hedgehog, alligator, and others) for them to pet, they had story time and movie time, and brownies, and what more could a little boy ask for? When I picked him up the last day, he was watching a movie dressed in a chef hat and a Speedway vest. What? Why? I still don't know! I can't tell you how happy I was that he had a good time. They did a great job with Kids Camp.

Anyway, after I dropped Nate off Monday morning, I went over to the conference and immediately recognized some of my mommy friends from the babycenter spina bifida board!!!! I had already met Wendy, but this was my first time meeting Leigh, Emily, and Elizabeth. It's so funny when you feel like such good friends with people you've never met before! We all went to the opening session, which is where I first started hearing about this executive functioning business, as well as some other awesome information from very well respected speakers. In the afternoon was the Parent Chat. There were 35 people in the room, all of whom have a 5 year old or younger who has SB, and I personally knew half the people in there! It was so funny. In addition to my babycenter friends, there were 11 people in there from Kentucky. I was so proud when one of those moms was giving another advice about a program she uses, and she said twice, "I never would have known about this if it wasn't for our Playtime with Me at SBAK." Yes! That's the whole point! Made my heart happy that we're doing something that really makes a difference. Also, you could tell a huge difference in the parents who have a support system like our SB board or the playgroup, and those that don't have the support of other parents. I am so lucky!

That evening we had an impromptu playgroup! The hotel staff let us take over their breakfast restaurant that they weren't using in the evening, and we moved tables, set the babies up in the middle, and gathered a bunch of people from Kentucky, and my babycenter mommies! It was so much fun having all of us sitting face to face across a table.

This is our little buddy Ian, but Nate doesn't get to play with him enough to remember his name, so after he left for the pool, Nate cried and cried, "I want to play with that girl!!!!" (He still gets his pronouns mixed up sometimes!)

It was interesting staying in a hotel by myself with both kids, but I'm very thankful that my parents were staying in the same hotel to take care of Georgia during the day, and they were a huge help with Nate too.
 

Us girls getting ready on Tuesday morning.

 

Tuesday was packed full of sessions about everything from social skills to physical therapy to bracing to folic acid. I learned a ton and took pages of notes, and my brain was starting to get a little mushy by the end of the day from information overload. We needed to just get out of the hotel. So we went to dinner, and as often happens, Nate had a huge fit in the restaurant. As in, screaming. It was bad. Georgia was screaming too, but Nate is, after all, four now and should act a little better. So my mind was all over the place that night, just confused about why he's been so out of sorts, especially since Minds in Motion but also just regular Nate stuff. I've said before that Nate seems like this really complex puzzle, and I figure out little bits and pieces of him at a time, but I haven't totally figured him out yet and what makes him tick. The next day, I found what I think is a major piece of the puzzle.

Like sensory processing, this executive functioning stuff is hard to wrap my brain around. But I'll try to explain it. There are some differences in the brain in a child with SB. I really like to think that SB is only physical stuff, but when there's any kind of difference in your brain (for example, Nate has mild unshunted hydrocephalus and very mild chiari malformation), it can cause some differences. The differences are not so noticable to the untrained eye, so sometimes our kids could get blamed for being lazy, innattentive, etc., when they have very real reasons for how they are acting. The pre-frontal cortex of your brain controls your executive functions--"abilities that allow a person to successfully engage in independent, planned, strategic behavior to reach a goal." They are a set of cognitive skills required for individuals to carry out tasks. These skills are often lacking in people who have SB, and the skills include:

Inhibition: The ability to think about consequences before you act. (Picture a teenage boy here!)

Shift: Transition freely between tasks (e.g. Time to stop watching TV so we can have lunch.)

Emotional Control: Ability to manage emotions by thinking rationally ("I'm disappointed I can't play outside because it's raining, but it's okay cause mom said I can play outside tomorrow if it's nice out.")

Initiation: Ability to begin a task or problem solve independently. (An example of this might be: Nate sees some kids playing a simple game, and he stands on the sidelines watching them, smilings. If you ask him if he'd like to play the game, he says yes. But it takes you actually guiding him there before he will play. There's a difference between knowing what you want to do and actually doing it. Those who have poor initiation appear lazy, unmotivated.)

Working Memory: Hold information in mind long enough to complete a task (For example, 2-3 step directions such as "Pick up that toy and put it in your toy box, and close the lid.)

Planning/Organization: ability to manage demands, create a plan or step by step process to get from A to B (such as when you tell a child to "clean you room." It takes a lot of planning to figure out all the steps to get that done.)

Organization of Materials: Organize belongings, create and maintain systems to keep track of information and materials. (Could be like understanding where the cars always go and where the dolls always go.)

Self-Monitoring: being able to monitor your own performance and measure it agains standard of what is needed/expected, ask yourself, "how am I doing?" (Maybe like comparing how he is dancing to how his buddy is dancing and trying to do it the same.)

Then the speaker gave an example of a 4 year old boy named Micah who has a melt down over every little thing, especially when he's tired or hungry or in places where there are a lot of people and noises. Far moreso than his peers. He has trouble transitioning from one activity to another, even if the next activity is really fun. He thrives on routine. It went on and on, and sounded like she was not referring about a boy named Micah but instead about a little boy named Nate.

When Nate was a baby, we thought, hmm, maybe he's just a lazy baby. He doesn't seem to have that innate desire to move, even though he has the ability. He's happy just to sit in the floor and smile at us. He's never been one to say "I'll do it myself." This is all INITIATION. Nate has a terrible time transitioning between activities. His teachers and therapists bring this up all the time. He throws major fits, even when a cartoon ends and another comes on. This is SHIFT. The tantrums he has, especially in public places like restaurants. He melts over every little thing. If he drops a cookie, it's the end of the world. If he asks me to carry him and I can't right that second, it's the end of the world. He can't rationally see that it's going to be okay. Moreso than his peers. This is EMOTIONAL CONTROL. He had a terrible time learning how to crawl, climb stairs, etc, partly because he was a bad motor planner. He couldn't figure out the different steps it took to do these tasks. This is ORGANIZING/PLANNING.
Please don't get me wrong--I'm not making excuses for Nate or trying to slap a label on him to explain away his behaviors. This infomation gives me so much HOPE. It's really not that I'm doing a terrible job as a mother, or that Nate is just a brat. There is a real, anatomical reason for these challenges he's having, and now I have things I can do to help him. We have already learned over the years to do many of these things, such as remove him from an overstimulating situation if he's having a tantrum and talk him down off his ledge. But they certainly gave me lots of tips for more I can do. Like games to play, how to prepare him for situations, how to keep him in a good routine but mix it up now and then so he doesn't get stuck in a rut.
So all this information has really helped me understand Nate better, and it will also be helpful when talking with his teachers and therapists.

I went up to the speaker after the session was over, and I told her a little about Nate and that he had been diagnosed with Sensory Processing Disorder, and I wanted to know how that was related to the Executive Functions. She said sensory processing is under that larger umbrella of executive functions. She said that with all this sensory therapy, we're just treating a symptom and not the real cause of the issues! BREAKTHROUGH!!! I asked her what type of specialist I need, because we have a specialist for everything! :) She suggested we contact a Speech Pathologist for Cognitive Rehabilitation. There wasn't any more time to ask questions, and I have no idea what this is, but I'm going to find out! I know, I know, another therapy, but I really feel like we're finally starting to put all the pieces of this puzzle together and might actually start to get some real answers.

So I came back from conference physically exhausted, but mentally invigorated. I'm so glad I had the opportunity to go, and I'm going to put a lot of what I learned into practice, both at work and at home.