Our daughter, Sophie, is almost 23. She has a rare disorder, HSAN Type 2. With this very rare diagnosis comes a boatload of other issues: medically fragile, non-verbal, relies on us to assist her for just about everything, doesn’t walk, doesn’t talk, doesn’t eat.
However, one of the most challenging characteristics of this disorder is that Sophie doesn’t feel external pain. She does feel some things internally, and probably more extremely than regular folk. This puts us in a very interesting category of “nerve deafness.” Think about this. You have five primary senses: hearing, sight, taste, smell, and touch. Most people are familiar with people who are deaf or blind. It is very likely that if you are blind, your other senses are heightened to accommodate your deficit. But Sophie has very little taste, a small amount of hearing loss, and probably very little sense of smell. These are all part of her disorder. And yet, she finds ways to interact with her world.
Consider not feeling. I tell people that to be like Sophie it would be as if your whole body has been given Novocaine. Sophie can feel deep pressure, but she is unable to feel light touch, a scratch, a burn. She has no idea that she can injure herself or others. Her sensory deprivation creates some interesting behaviors.
While no one has officially added to her myriad list of issues the term “autism,” she definitely falls within the spectrum, and we describe her to people as having autistic-like tendencies. She rocks rhythmically, she flashes/flaps her hands in her peripheral field of vision, and she has a tendency to be repetitive in her speech (on her talker) and in her needs (videos/YouTube/books). She has no idea how strong she is, how hard she can grasp or hit.
Accepting the “Isms”
Sophie can do harmful things to herself and to others, almost always without intention. We found consequences did absolutely nothing for her; in fact, it gave those undesirable behaviors power. When you hit and someone reacts, it becomes powerful. We learned skills to divert that energy, to not react. Our best ally was redirection.
Early in her journey, before we had so many other issues to deal with, and not knowing that these “isms” would actually show up, we were introduced to a radical vision: that “isms” are OK. Really, as long as they are not harmful to her or to others, I also learned that there is probably a reason for them. We learned to observe, join in her “isms” and try to discover the meaning.
This radical vision? It was introduced to us by the amazing folks at The Option Institute/Autism Treatment Center’s Son-Rise Program. They took us on when Sophie was only two years old and we had no idea how to help this strange, beautiful child. Back in 1995, their idea of joining the person, inviting her to do things differently, without forcing her, and with great love resonated with my husband and I. Interestingly, many of the programs out there now work in similar ways. We and family and friends helped raise money to get us to that glorious place in the Berkshires a number of times. It was time and dollars well spent. We carry these philosophies forward in our lives and when helping our daughter navigate her world. If you are interested in more information, please visit their website at http://www.autismtreatmentcenter.org/. Raun Kaufman has recently written a book that can help you understand and implement a few of the ideas without the cost and intensity of the program.
Another thing we did to help Sophie was to provide her with a robust “sensory diet” at a very early age. Why would we do this with a kid who can’t feel? We decided to give her body as much input as was possible in non-harmful ways. She is missing the myelin coating on most of her peripheral nerves, but sometimes the message gets through. It was worth a shot.
A sensory diet is:
a group of activities that are specifically scheduled into a child’s day to assist with attention, arousal and adaptive responses. The activities are chosen for that child’s needs based on sensory integration theory. The use of specific types of input; proprioceptive, tactile, visual auditory, vestibular, gustatory, and oral motor are introduced during various times of the day and assist the brain in regulating attention and an appropriate level of arousal. These different types of input cause a release of neuro-chemicals that can last up to two hours, depending on the type of input and intensity. A sensory diet is designed to keep a flow of these neuro-chemicals steady in the brain throughout the day for improved learning.
For Sophie, this diet consisted of a lot of Occupational Therapy with sensory stimulation in mind, and Physical Therapy that recognized that she needed deep input for her body to understand. We brushed her skin. We swung her. We let her play in beans and beads of plastic (always conscious of injury issues while protecting her when needed). This is where repetition was her friend: she needed input to her proprioceptive and vestibular systems hundreds of times more than regular children.
Most of the professionals who saw her in the beginning were shocked to see this kid they thought would be a blob of a human being interacting with her world, sitting up, interested in her world. She learned to scoot on her bottom. She learned to grasp objects. She learned to use her knuckle to touch the screen on her talker. OTs and PTs with a sensory specialty were key.
Other Helpful Strategies
To this day we still do sensory things. She has had great success with the Power Plate, a multi-benefit exercise tool that incorporates whole body vibration technology. It delivers deep vibration to her system. She is now walking with assistance, something almost no one believed would happen. For more information on Power Plate please see https://powerplate.com/.
Finding an appropriate communication system was also helpful. When someone can communicate effectively and with intention, to feel heard, a lot of frustrations are taken away. It also gives the people helping her some idea of “why” she does what she does.
Sophie today? Her stimming is reduced, though she has good and not so good days. Deep pressure helps. Helping her digestive tract work better helps (that’s another story). She still rocks, mostly to help her burp, sometimes to calm herself, and sometimes for no reason we understand. Most of the time we can understand her wants and needs, so we work on getting her to explain why she acts the way she does.
My point is to keep exploring and keep asking questions. Find people who are qualified in sensory issues, but even more importantly, in my opinion, is find what resonates with you and your child. Observe. Take time to observe. Do what they do. It can be a revelation, rich veins of gold to follow to find the shining star that is your amazing child.