Thursday, April 18, 2013

Great article on Sensory Processing Disorder

I generally don't dive into medical or developmental details very much on my blog, but I came across this article in Parent's Magazine last night.

Kids Who Feel Too Much

Sensory Processing Disorder seems to be a daily topic of conversation for me lately so I was very happy to see such a well done article in a popular parenting magazine.  The timing was impeccable for our family, as our parents have been so amazing and supportive about trying to understand more about this challenge but I'd been able to find a great explanation.

Andrew's been in therapy (occupational, physical, and speech) nearly his entire life.  He is currently receiving all services at school.  But as he is getting older and seems to be catching up in all of those areas (he does respond well to therapy) there is one area that is becoming evident that he is having a hard time.  As he's able to communicate more, tell us what is bothering him in certain situations, last fall we started to realize that sensory issues were really hindering him.  We requested an evaluation at school in November, and he received a definite (the most severe) dysfunction score in 4 areas - vestibular (balance), proprioceptive (body awareness), vision, and hearing.  As well as other areas of moderate dysfunction.

One recent example was when we took him to the water park at Great Wolf Lodge.  When we walked into the park he immediately had a panic attack from the loud white noise due to the running water.  It's not something I even would have noticed.  A more recent example would be when we took him to the Egg drop festival.  He ended up enjoying the egg hunt, but at the festival itself he was stressed out.  When we first arrived and turned the corner and he saw some of the crowd arriving, combined with music in loud speakers, on a bright day, he immediately recoiled and begged to go home. He isn't learning to pedal a bike because he's very uneasy sitting on a bike because he thinks he's going to fall.  I took him to a reputable kid haircut salon and he had a panic attack because the kid next to him was making his car go up and down and it was too noisy.  In the bath tub he acts completely frozen from the waist down. After 9 months of being potty trained, and immediately taking to potty training, he is extremely anxious sitting on a toilet (he thinks he will fall) and extremely anxious using toilets that he's not familiar with (even if standing up).  They have noted multiple ways in which his sensory distractions make it hard for him at school.

The most severe essential issue that we've dealt with is oral sensory issues resulting in extreme difficultly feeding as an infant and refusal to self feed as a toddler.  Thankfully we had an amazing OT who worked with him and he's now completely overcome his feeding issues.  I really feel for families dealing with this who have kids that are more severe, on feeding tubes, and can't seem to overcome this issue.  This is so common especially in preemies on ventilators.  This single issue and overcoming it changed our lives.

I'm particularly grateful for his recent language surge because his comments lately have been very helpful.  At the dentist last time (he has been going monthly because of his sensory issues, and it's helped a lot) he was able to tell the hygienist that the reason he was upset was because he was afraid the (movable) dentist chair was going to fall on him.  They were able to clean his teeth while he stood up and avoid any tears!

Since sensory issues affect him on a daily basis, I began to realize how this could affect him in other areas. He is in speech therapy, working a bit on articulation but primarily on conversational language and social skills.  How can he work on and improve in these areas if he is uncomfortable in so many situations and activities?  The sensory areas can also carry over to his gross motor delay (he tends to be more stationary and choose cautious activities) as well.

He recently qualified for OT twice a week on top of the therapy he gets at school.  They are recommending hippotherapy (riding horses) this summer if we can get him in a program.  This is supposed to be amazing and effective and I'm excited.  We will also be adding ST and PT if we can get a time slot.

The therapists do a great job of building trust and knowing how to work with the kids to progress their skills without pushing them too far.  Pushing them too hard or throwing a child into a situation head first (expecting them to "get over it") can initiate the "fight or flight" response and results in too much anxiety and a regression.

As long-winded as this is, I guess I'm not sure I even have a point other than to spread the word.  The more open I am, the more I hear about other people's kids struggling with the same things.  Awareness and education are always a good thing.  We were told last year that it would get worse before it got better, but will improve with therapy and after a few years.  

If you know Andrew, I hope this helps you to understand a little more about him.  And otherwise I hope this helps someone else out there who has a child or friend or relative that might be going through something similar!  I really don't want this post to be a long list of ways in which Andrew is struggling, because overall he's doing very well and I'm extremely proud of him.  I think this is really a big part of the remaining picture for him and now that I'm understanding more about it, I'm very optimistic and encouraged that he's in the right therapy to give him success.


julie April 19, 2013 at 8:22 AM  

I think your post is very positive, helps people with awareness and tolerance of others. Andrew is truly amazing and so are you and Ryan as his parents. Elliott, not even 2 is a wonderful little brother. love you guys!

Georgy April 19, 2013 at 9:33 PM  

I wasn't even aware of this disorder until our oldest came home from school a few weeks ago with some information on SPD and all of the symptoms mentioned were pretty spot on to what we're experiencing with our youngest. I just assumed (well hoped) that this was typical and he would eventually outgrow it. Thanks for sharing, this was very informative!

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