Let me explain (Nate)

Okay, so I realize I didn't do a great job of explaining background in the post about Nate's issues resulting from Minds in Motion. (Some strange things going on with Nate) Frankly, I sometimes get tired of hearing myself talk (even in my head) and just cut to the chase.

1. Nate has Sensory Processing Disorder. This is seperate from Spina Bifida. Everyone has sensory stuff that bothers them. You may not be able to stand riding roller coasters, or hearing nails on a chalk board. I can't stand even the thought of a wooden popsicle stick touching my mouth. That's sensory stuff. Your brain receives sensory information but doesn't know how to process it. Some people, like Nate, have a lot of this sensory stuff going on to the point that it disrupts their lives. For Nate, two of the most significant effects are that he has trouble regulating his mood (even for a little guy) and he feels off balance all the time. No one really knows why some people have sensory issues--anybody can have them, but they often go along with other special needs, especially autism. But having sensory issues does not mean one has autism. Some theories for what causes this are a traumatic gestation or birth, living in an isolette in the NICU at birth instead of being held, not being very mobile as an infant ... could be any or none of those things. We just know that this sensory stuff kept Nate from walking for a long time and still limits his mobility somewhat. And the mood swings ... yeah.

2. We've done therapy for his sensory issues before. We've done "brushing" (using a special brush on his arms, hands, legs, feet, and back, as much as every 2 hours all day), swinging in a lycra swing (or other type of swing), listening therapy, spinning in a chair, and more. It's all designed to give Nate's brain the sensory input it needs to help it learn how to process it. And it's all helped. For example, when he was about 27 months old, he refused to walk in his walker because he was afraid of being off the ground. After only one week of swinging in the lycra swing, he took off in the walker. Brushing him INSTANTLY calms him like magic. Last year, after doing Listening Therapy for the first time ever at Green Hill, he took his first steps. It's that powerful.

3. A few months ago, I read about Minds in Motion and was so excited because it sounded like exactly what he needed. It's intensive sensory therapy, especially focused on the stuff Nate needs most. We all went to an information session at Minds in Motion back in March, and Blake and I knew within a few minutes that we needed to figure out how to get him into this program. They told us the science behind it and the experiences they've had, and these kids sounded just like Nate. The problem was that it was $1200. We prayed about it, that if this was not right for Nate that we would not be able to come up with the money for it. And almost miraculously, we easily received a grant from another agency for the full cost, just by calling and asking. We also knew it would be a big commitment from all of us, so we waited until Nate was out of school and stable on his new seizure medicine.

4. Minds in Motion involves playing with their staff in the gym and doing Vision therapy and Listening therapy. The founder of this program oversees it on a daily basis. We expected some strange behaviors as a result of the Listening therapy especially. Remember, we've done this before, last year. (See pictures here) And I think the last time it resulted in him starting to put everything in his mouth. So it's not totally surprising he is now having weird side effects from the Listening therapy, but we weren't expecting them to be so severe. Poor guy has had a lot going on lately, with all the mess of going on seizure meds, coming off them, going on another one, etc, plus me going back to work and getting a new sitter and his sister getting so mobile. So it's a rough time for a little guy. This sensory stuff that's coming out (emotional instability, physical unsteadiness, fist clinching, jaw clenching) is stuff that he's had already ... it's just really magnified now. They say if you see weird things happening, that means it's working. I think they are surprised at just how much Nate has been affected. But we can't just stop right in the middle of it. That means it doesn't get resolved.

5. I struggle all the time with how to handle Nate's issues and what sort of help he needs to give him the best chance at life. There have been times that I overloaded his schedule with too many therapies. It's hard to know when to stop when your child has several issues and you have all these resources at your fingertips that could potentially help him. And then there have been times when I haven't pushed him enough. I knew Minds in Motion would be difficult for all of us, because it's a lot of work. He goes for an hour five days per week, then we do listening therapy another time of day. On weekends we do it twice. We also do vision therapy. It's a half hour away, right at the time when Blake and Alisa "trade" the kids. But I earnestly prayed about this and feel like God provided a way for this. Of course I am closely monitoring all of these quirks and behaviors and keeping the Minds in Motion staff informed. And of course I would never do anything that I really thought would hurt Nate in any way. But the tough part of parenting ANY child is that sometimes you have to subject them to things that aren't pleasant because that's what's best for them. I've pushed Nate in therapy when all he's wanted to do is rest. I've made him walk when he wanted to be carried. And now I'm having him do this therapy (that he likes, by the way) that makes him cranky and want to clench socks in his hands all the time because I think at the end of the month he'll be better off for it. It's painful to watch him be miserable. But he is unhappy on a daily basis because of these sensory issues, and that's why we're trying to resolve it at an early age.

Today when I dropped Nate off at Minds in Motion (I had the morning off), I talked to the staff, and they said he gets a new CD today--he's been listening to the same one for the last two weeks. I was hoping the change of CD would help, but Alisa said it was even worse today. Her words were "It's like the Keppra days." But Nate has actually been pretty good for me, so I hope it was a fluke. Only two more weeks, and it's over, and hopefully we'll think it was worth it by then.