Albinism, BeYouTiful, Brotherhood, Childhood, Enjoying the Ride, find your magic, friendship, Kindness, Learning, Mommy Journey, Motherhood, Sensory Processing Disorder, Soul food, SPD, Staycation, traditions

 

After a long but rewarding February Staycation with my boys I found myself reflecting on how far we have come as a family. Just a year ago, spending a week at home with my boys would have sent me into a state of anxious distraction. For those of you who do not know, my two boys have a history of not getting along–like AT ALL. So much so that we hardly ever do activities together as a family. It is mostly because each have sensory processing disorder as a result of their low vision which is a part of their albinism. Basically it means they receive information from the world in a different way than fully sighted people. Things sound, smell, taste, and feel differently than they do for others. One son takes information in more intensely while the other son processes the world with less intensity. Its like this-one son seeks out play that involves water, music, dress up, and technology while the other will only play with cars. As you could imagine, this, along with typical sibling rivalry, has lead to a chaotic family environment that is always engulfed in turmoil. In the past I have gone to great lengths to ensure that at least one child had plans each day of vacation.

In the beginning I was stuck. I did not know enough to effectively help my children and I was just too overwhelmed to do anything about it. I felt myself spiraling into a dark hole of depression and anxiety, always throwing my hands up and lashing out at the world. As is often the case, I came to a place of decided determination after a tragic loss. I would not waste another minute being a victim. After nearly two years of weekly therapy sessions and a proper medication regimen,  I had enough tools to separate my feelings from my actions. I learned that I still deserved to feel my feelings but no longer would I allow them to keep me from helping my children.

What a lot of people don’t understand is that Sensory Processing Disorder, or SPD, often affects children until they are resensitized to respond appropriately. It is also a spectrum disorder which basically means, one person with SPD may over-respond to the touch sensation and find clothing, physical contact, or other sensory input as unbearable. Another might under-respond in reaction to stimulation. It is amazing to me how many childhood “quirks” actually end up being a behavioral result of SPD misunderstood. This is why it is so important that we educate ourselves about the intricate aspects, triggers, and therapies associated with SPD.

Understanding Sensory Processing Disorder has allowed my husband and I greater access into the world’s of our children. It has provided my sons with the much deserved patience, understanding, and praise they were lacking as a result of our lack of knowledge

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SPD kids experience the world in a unique way.

While society’s understanding of SPD has skyrocketed in recent years it is still a very misunderstood disorder. Children are often considered rude, bossy, (one of my sons was actually described as bossy in his IEP) inattentive, annoying, or even confrontational as a result of the behaviors they exhibit due to SPD.

Our school systems are working hard, in most cases, to train their educators in the specifics of this disorder. That being said, finding a public elementary school whose occupational therapy (OT) program has a sensory integration (SI) approach is not common. I am sad to say my own sons’ school does not have one. They no longer receive OT at school as their therapist admitted she did not know what to do to help them. With the sensory model, well-trained clinicians will effectively combine an Integrated Listening System or other complementary therapies with Occupational Therapy and Sensory Integration techniques. Unfortunately, these are the type of services that are also often denied by insurance making it incredibly burdensome for families to access the services from properly trained therapists outside of school.

What is a family to do?

Well, in our case, we were eventually able to escape the trap of  our defeated state of “overwhelmdome”, though it was not easy. After leaving my job as an educator so I could care for the boys money was pretty tight. I had to educate myself as efficiently and quickly as possible. I scrounged up enough money to pay for some private OT sessions that integrated the SI approach by having multiple yard sales and purging as much as we could. Like any parent, I did whatever I could. I sat in on every session and took notes. I asked the therapist to point me in the right direction and share any reading material she felt would help. That was just over three years ago. I still have so much to learn. But, thankfully I have learned enough to begin making changes that provide my children with the training and tools they deserve. In turn, we have begun to experience more joy and compassion and less fear and anguish.

So after years of stressful vacations and avoiding gatherings with friends, we feel comfortable enough to venture out into the world. This does not mean that we have it all figured out. I don’t even know if that is possible. What it does mean is that we have committed to learning and growing and listening to the behaviors and words of our children. It means that we work to educate our family and friends about the things that affect the behavior of our children. It means we judge our children and ourselves less. It means we share our journey in hope that it may help just one other family understand that SPD is not about blame or behavior. SPD is just a different language, one that we should all learn.

If you are interested in learning more about Sensory Processing Disorder check out the links below. They are chock-full of helpful information. Also, please feel free to contact me at tbenevento@findyourmagic.org.

Learn more about The Sensory Spectrum

Comprehensive List and Description of Sensory Tools and Toys

Information I have found helpful

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