Friday, November 16, 2012

All Mixed Up: Our Journey Through Sensory Processing Disorder

Having three gifted children, I think we have seen all that gifted has to offer - the good and the bad. The latest waters we are rafting are Sensory Processing Disorder or SPD. This condition disproportionately affects highly and profoundly gifted children, and all three of my children deal with it to some extent. SPD can be summed up best with the words - mixed messages. This condition is when the brain doesn't quite get the messages from the five senses correct. SPD is a whole system condition that isn't accurately diagnosed until you step back and look at the big picture. It presents itself with a lot of "little" things that seem more annoyance that disability. For instance, when messages from the sense of touch get mixed up, this is when we see the often found issue with profoundly gifted children - the clothing wars! Jeans are a no no, socks are a struggle, and tags are simply too painful to even consider. Going to the store to buy clothing with a gifted child affected by SPD isn't a joyful experience; it's akin to picking out a cast or a brace! It is choosing the least horrible torture device. A tap feels like a shove, or they don't realize how close they are to other people. They like to touch walls and surfaces and jump and bounce - they need big reminders of where their body is in space because they can't trust what their senses are telling them about their bodies position.
SPD and the sense of taste comes in with severe food preferences, my eldest prefers bland foods like rice, bread, and pasta. I had to become a "creative" home chef, sneaking in more variety whenever I can. I am constantly throwing jars of baby food into pasta sauces and cooking extreme rice blends to improve his nutritional intake (who knew there were so many different varieties of rice!). For my daughter, texture - she is only five but can tell you with one bite if something is "smooth and creamy" versus "soft and mushy". She isn't being rude or mean, "soft and mushy" feels to her the equivalent of someone forcing you to eat live, squirming worms - it just feels so wrong.
SPD and the sense of sight I have blogged about quite a bit. We have been in vision therapy for over a year. They have made amazing progress, but it was a process just finding out what was wrong with their eyes. Their first eye exams were when the twins were just 2 years old. They were "20/20 and just fine", or so we were told. It wasn't until we found a developmental optometrist that we got the real story - sure they saw "20/20", but they also saw an independent picture in each eye, had poor tracking and convergence, almost no periphery vision, and their eyes often jumped around when trying to focus. Yes, those messages to the brain were getting all mixed up!
SPD and the sense of hearing has been as much trouble as the eyes to us. The children all hear so accutely the register off the charts in standard hearing test. They can hear as good as some animals! Unfortunately, they hear at different levels in each ear and they have limited ability to filter out background noise. This makes birthday parties with screaming children, lots of sounds, and flashing lights absolute misery for my children - especially the twins. I often tell people it's like someone taking 5 radios, tuning them to different stations, turning them each up to full volume - then trying to have a conversation with you! All you would want is for the noise to stop! This is how my children experience the world around them - a jumbled mess of too much noise.
SPD and smell is another fun one - I don't think people realize just how many smells there are in the world! My children smell it all, intensely. For the good smells, it is wonderful. I remember my 5 year old son telling me that he loved flowers because they smelled so beautiful - wow. But, life stops when you get to an absolutely repulsive smell. Most people can just ignore a bad smell, but my kids don't just "smell it", they "feel" the smell.
This overwhelming of the senses leads to emotional intensity as well - everything is "felt" on so many levels they just need a break from the world. If they don't get their break from the world, well - it's not pretty. The number one recommended educational interventions for children with SPD is: computer based learning and home schooling. This explains why half of all profoundly gifted children are home schooled. Often times the best "therapy" for SPD is environmental control, and you get that the most with home schooling. You also limit the things that would send children into absolute overdrive - like too much noise, too many smells, too much touching.
My children are also doing Sensory Integration Therapy - an intensive therapy where the senses are "shocked" in a controlled environment to try to rewire some of those crossed connections. We have had great results, but it isn't a "cure". Environmental control is still important, so is buying clothing with no tags and allowing them to have their emotions do what they need to do - release.
There is more to SPD, but the big thing is that when I speak with parents of gifted kids and talk about SPD, they shake their heads. Not everyone knew a name for it, but I haven't met one parent of a profoundly gifted child that didn't also have a story about socks or jeans, or the child covering their ears in loud places - even as a small child, or even them "needing" to jump and bounce to figure out where their body really is in space.
When you look into SPD, it makes sense that it affects gifted children more. They make so many connections so fast, there is bound to be some cross wiring. The big thing is finding others that know and understand. My friends have a few other gifted friends and watching them play together is so refreshing. They "get" each other, they experience the world in a similar way - they are more gentle with each other, but also more patient. Less than 10% of the population of gifted; less than 20% of gifted children are "highly" gifted, and less than 10% of gifted children are profoundly gifted. We hear a lot about the "1%" when it comes to socioeconomic status in this country, no one talks about the 2% in the area of "intelligence". These kids are rare, but so are their issues. So many people think having a gifted child is about their ability to recite the alphabet at 2 years old, or do multiplication at 6, or Algebra at 7. People rarely see the many disabilities that come with profoundly gifted children. I understand and that is why I blog - so others like our family can find they are not alone. Also, so those that haven't interacted with highly and profoundly gifted children can have a bit more understanding. Yes, most of our time our world is a beautiful as the smell of a flower; yet there are times when we deal with the thorns of a disability. So yes, I do consider parenting gifted children the blessing of a thousand roses - beautiful to see, wonderful to smell, gentle to touch; but that doesn't mean there are no thorns. There are thorns, a lot of them.