Finn, Sensory Processing Disorder, and the Road Ahead

This post has been a long time coming, but, for many weeks now, I just wasn't ready to write it. As some of you know, we have been struggling with Finn for awhile now, realizing that he wasn't quite like other kids, but not sure why he was different. From meltdowns at swimming class to kicking to screaming at the dentist, he was just different. However, we managed to arrange our days to accommodate him and his needs, and so just how different he was from other kids his age was not completely apparent. But, when he started at the pre-k program at our local elementary school in September, his differences became very noticeable. Not only because he was with 25 other same-age children each day, but also because this new (and huge) transition to school was, well, let's just say it brought out his problems in full force.
So, we had Finn evaluated by an early intervention team (through the public school system) as well as an evaluation by a private psychologist and then subsequently by an occupational therapist. We were told that he has a lot of anxiety and also has fairly severe symptoms of Sensory Processing Disorder (SPD). SPD was something I had never heard of until Finn was diagnosed with it, but as soon as I started reading about it, it fit Finn to a tee and explained all of these weird, seemingly unconnected issues that we had been struggling with for the past few years. SPD is hard to explain, especially as it varies from person to person, but essentially, Finn's brain doesn't process many sensations the same way that a 'normal' person's brain would. His brain has trouble organizing the sensations from his body and this disorganization can lead to emotional outbursts, whining, hyperactivity, and many other symptoms that Finn has been dealing with. He has significant issues with touch sensations and has severe tactile defensiveness, which means that touch can (and often does) feel very threatening to him. So things like going to the dentist, getting his hair cut, taking a shower..... things which he has always refused..... are notoriously difficult for children struggling with tactile defensiveness. Now that I know this, I feel terrible for having been so frustrated with him for putting up a fight during these activities in the past.
Although I was sad to discover that my son had a disorder.. and one that can't be cured (but hopefully better managed!)... I was also happy to figure out what was causing his differences, to be able to explain (albeit very generally) why he acts the way he does, and to be on the road to helping him through this.
Over these past couple of months, I have been reading lots and trying to learn as much as I can about Sensory Processing Disorder. For me, I need to understand why something is happening in order to process it all. And  considering that I had never even heard of SPD before September, I feel like I am slowly becoming an expert. In a lot of ways, we are lucky. Most kids who have SPD also have some learning disabilities that come with it, particularly delays in speech and then later in math and reading. Finn's speech is above average, and at 5 years old he is starting to learn to read and already does simple addition, subtraction and multiplication in his head.  This isn't to say that he won't have problems in school later on, because his learning style likely won't exactly 'mesh' with the public system, but at least we know that he is capable of learning easily... we just need to make sure that he is in the right place where he can do that. A lot of kids with SPD also have deficiencies in fine motor abilities, and again, Finn is way beyond his age level there.  Where he does have problems is mostly with his self-regulation... controlling his emotions, regulating different touch sensations.. and with his motor planning.... what to do with himself and how to do it. This is why the smallest change in plans can trigger a huge meltdown or why getting dressed every morning is a huge hour-long affair.
So where are we at now? Finn is going to therapy every other week to help him build confidence in himself and to help him be more flexible with the unexpectedness of life. He is also going to occupational therapy each week to help regulate and organize his sensory inputs. And, we are doing a whole lot of exercises at home to help his brain re-organize sensations. Let's just say it is keeping us pretty busy.
And, things have been getting better... slowly. School is so much better for Finn. Morning drop off is so much less stressful, he has been peeing at school (albeit inconsistently), and he is participating in many more of the activities than he was 2 months ago. And these changes have helped his out of school interactions as well. If we are at the park or around other children, I often find Finn making new friends and interacting with his peers. This is great progress considering that he used to turn away and run to me if a strange child approached him at the park or museum. His social skills are so much better and he becomes comfortable in new situations so much faster than he used to.
However, we still do have struggles. Days at home, especially afternoons after school, can be an emotional roller coaster. Many mornings he simply wakes up mad and crying... and those are the days that never seem to get back on track. Getting dressed is still a struggle, transitions are still hard, and there is still no way that I could ever get him in a dentist's chair without sedation. But, things are improving! We are learning how to help Finn moderate his emotions and he is learning that he can make decisions to empower himself.
We are on a long journey, with a lot left to learn and a long way to go. I know that Finn will never experience sensations like most kids do, but I think that, with our help, he can succeed in both school and life. Now it's just about staying focused and making good decisions.
Do any of you have children diagnosed with SPD? If so, I would love to know how it has affected your child and what has worked for you! Pin It Now!