Mama Gone Green is a blog dedicated to raising happy children and reducing our impact on the Earth. My name is Taryn and I am the mother of 2 young kids and an environmental studies instructor at a community college in Portland, Oregon. Please join me as I journey through life as a mama, teacher, knitter, photographer, gardener, and environmentalist!

Sunday, November 25, 2012

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!

9 comments:

  1. My 16-year-old, Josh, has a learning disorder with an unspecified diagnosis...when he was in kindgerten he was evaluated for Asbergers, but didn't really fit that mold according to the M.D autism specialist we saw. Others thought he was ADD...I didn't even know about SPD so it could be that is his issue. Anyway, the early years in school were a big struggle in many ways so I can really relate to what you are feeling. We managed symptoms as well as we could without medication of any kind...just diet and some suppliments. Long story short... Josh is now a wonderful 16-year-old who is calm and even tempered and has a tremendous amount of empathy for others who struggle and suffer. He still struggles in math and has an IEP at school for that. His grades are mostly B's and A's (only one C so far in high school). Ten years ago I would have been very skeptical of anyone who told me he would have this level of success in school. My point is that time and maturation, coupled with patient parents and teachers (who keep trying until they find something that works), are often the best methods of dealing with these kinds of issues. I hope you are able to find the strategies that work for your son. Based on my own experience as a parent, I would say don't give up...things really do get better.

    ReplyDelete
    Replies
    1. Thanks for your kind and helpful words! It is so nice to know that I am not alone in my struggles. Glad to hear that your son is doing well!!

      Delete
  2. I am so happy for you that now you know the disorder and can be prepared for his growth. He is so lucky to have you as a parent and I am impressed with your school district! Good luck and I know he will be a success!!

    ReplyDelete
  3. Karen is right...Finn is so lucky to have a mama who cares so deeply about him and loves him so much. My sister is autistic and I witnessed what a challenge it can be to advocate for your child. It sounds like you have a plan and I see nothing but bright things in the future. Much love to you, Taryn.

    ReplyDelete
  4. So happy you have found some answers and are gaining an awareness of what you can do to help. It won't be an easy path, I am sure, but with you as his mama, and the support he is receiving everything is heading in the right direction. Hugs mama.

    ReplyDelete
  5. How did you get Finn tested for that? I really think Sophie has the same thing. There are SO many similarities between them it is nuts! We had school transition problems in Kindergarten, her refusal to wear any kind of clothing with a tag or any kind of pants like jeans that are stiff or binding at all. I used to get so upset trying to get her ready for school. She has emotional outburst constantly and pretty bad anger issues.Even at 11 she has meltdowns.
    Same thing with the dentist, she has never had dental x-rays because she cant deal with the thing you bite down on, it makes her gag and have a panic attack. I don't know how they would ever do any work on her or fill a cavity if she needs it. She also has major problems with anxiety and when she feels she isn't in control of a situation. She worries way more than "normal" for a kid her age. A change in plans of any kind throws her into a meltdown. I would love to sit down and talk about this with you. Maybe is isn't too late for her to get some help too. Glad you find a way to help Finn early on.

    ReplyDelete
  6. I am sorry you are going through this, but I know you are doing all that you can to help your little guy, and with that support Finn will go far. I hope you find time to take care of yourself and get lots of support from those around you. Keep blogging about it. It may help you, and others going through similar situations. Thinking of you!

    ReplyDelete
  7. The good and the bad, we're in it full force and will support our babies no matter what, right?!! Bring it on, life! :) Parenting is so full of all kids of experiences and surprises, I sometimes wonder myself how strong I can be when it comes to my baby and motherhood! We have to believe that we're not given anything more than we can handle and deal with things as they come, as hard as it is sometimes. You're a great mommy!

    ReplyDelete
  8. I'm glad you've got a diagnosis and can now manage it easier, that's awesome especially at such an early age. Finn is very lucky to have you as a momma!

    ReplyDelete