Sensory Processing Disorder

Up until last month, I had never heard of Sensory Processing Disorder. Now, suddenly, it is a big part of our lives.

I tend to over worry at times, especially when it comes to Abby, but I was a little concerned about her behavior. She would run in circles around the house constantly, spin and twirl nonstop, I really did worry that she was a bit overly hyper. I also figured she was just being a typical three-year old and I was just looking way too much into things. Since I was a little concerned, I decided to bring up a few things with her doctor at her 3 year appointment.

I mentioned how hyper Abby is at times, I mentioned the difficultly we were having with things such as potty training and I also brought up the fact that while Abby has a huge vocabulary, she doesn’t really talk much in sentences and still likes to squeak and point instead of using her words. Her doctor really was not concerned, said that it all sounded like a normal three-year old but we would go for a speech evaluation just to be sure. Since we were already going for speech, she decided to send Abby for PT and OT evaluations as well. Just to rule everything out.

Abby’s first evaluation appointment was for PT. I went in thinking that this was no problem at all, Abby is a very active child and very strong little girl. While she was a little stubborn with following directions, she seemed to do just fine. When the therapist told me that Abby needed PT, I was surprised. Her weaknesses were things I hadn’t even noticed. Okay, not too big of a deal. I was assured that just a little therapy and she’ll be right on track.

Next up, Speech. While this was a bit of a concern for us, Abby did quite well at her evaluation and the therapist said she was pretty much right where she should be. Abby does have a few problems with her speech but most of it is just her age. She did score in the range where she needed a little bit of speech therapy but again, I was told that it wouldn’t be long before she was right on track.

We still had her OT Evaluation to take care of but there was a bit of a wait for that one. I was given a questionnaire to fill out at home with hubby’s help and I was honestly surprised at how much she did quite often. My concerns started to grow and I was a little impatient about waiting so long to get her in for her OT. I really became concerned after we attending Disney On Ice and Abby had such a terrible time with the noise level. Most will say it was just that event, when the music is louder than most like. But it wasn’t just that night. She started holding her ears at all kinds of noises. Trains going by, me pushing the shopping cart over the bumping floor at the store, anything really loud really upset her. I was so relieved when the clinic called to let me know they could get her an appointment at an earlier date.

The evaluation went well in my eyes, I noticed a few things she did that I knew were a cause for concern but I thought it wouldn’t be anything too terrible.

At the end of her appointment, while she got to play in the ball pit (her favorite thing!), the therapist sat down to discuss her thoughts with me. It would be a little while before we got back the official evaluation results but just from the evaluation and spending time with Abby, the therapist was certain Abby had Sensory Processing Disorder. I was floored, never did I expect anything like that. Sure, Abby has a few little quirks and tends to do things a little different but I always just thought that was her little personality and just her being a toddler/preschooler. The biggest concern is of course her being so sensitive to loud noises. The rest completely took me by surprise.

We scheduled these evaluations based on a simple concern about her speech and just wanting to rule out anything. To go in and discover she has so many little problems was extremely overwhelming. I felt horrible, I felt like I had completely let my little girl down and was a total failure as a mom.

We received Abby’s OT evaluation papers last week. Diagnosis – Sensory Processing Disorder and Developmental Delays. As I read each little paragraph detailing all her little problems, I couldn’t help the horrible feeling that overcame me. I felt like a complete failure. Abby stays home with me, I’m the one who is with her the most and who works with her the most. Reading each description hurt, it made me feel like I failed her. I didn’t work with her enough, I didn’t do enough to help her learn and grow, I completely let her down. She’s just a little girl and depends on mommy to help teach her things and I felt like I failed her.

Of course I know I didn’t let her down, I know I work hard with her and do so much. I still had those thoughts and feelings though as I read her evaluation. Having her OT evaluation back did help explain things which I have been stressing over so much. Like all our failed attempts at potty training and her problems with simple little tasks. It has really helped me not stress so much and showed me how to help her. I know now that doing things certain ways won’t work for Abby, I understand more now about why she gets so upset at times and I’ve learned just what to say to avoid little meltdowns.

What is Sensory Processing Disorder? Here is what the SPD Foundation Website says:
Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.”

Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

This website helped me better understand what we were dealing with. While Abby really doesn’t have too much trouble, it helps explain why she does need a little extra help. It simply takes her a little longer to figure things out but once she’s figured it out, she’s good to go! She also great really frustrated with the littlest things and now we understand why.

Abby isn’t really all that severe, all the therapists were quick to tell me that. She just has a few little things here and there and with a little therapy, she’ll be right on track. Her attention span, her problems with loud noises and her being a little overly hyper will probably be our biggest obstacles and even those (attention span and hyper) aren’t really that bad considering her age. The best thing is that knowing early means we can go ahead and get her started with therapy instead of waiting until she started school and having people just write it off as something like ADHD (which it isn’t) and sticking her on medicine that she doesn’t need.

All of these appointments have kept us insanely busy. Now we have a super busy schedule with therapy four days a week (and will be adding PT shortly) plus trying to let her do something fun like dance during the summer. It has all weighed heavily on my mind, it’s been a lot to take in and process all at once and I have my uneasy feelings at times. The good news is now that I know, I know what to really focus on with her. I’ve looked into some fun developmental toys and we do even more crafts/art projects now. Hopefully by the Fall we’ll even be ready for day care/preschool! Her evaluations helped open my eyes to things she couldn’t tell me and helped me figure out what to do to help her more. Every parent works with their child to help them learn and grown and discover… I’m simply doing the same except I focus a little extra on certain things.

I’m sure my husband won’t be thrilled that I shared this information, he doesn’t want people judging Abby or calling her names. I’m having second thoughts about posting even as I type because I know there are some out there that will read this and think very hateful thoughts, who will laugh and actually be glad that my daughter is dealing with this. Knowing that hurts me but I accept there are hateful people in the world. I also know there are amazing people out there that will be wonderful to talk to about all of this. This is what we have been dealing with lately (and why I have been a little quiet with blog posts) and I tend to share big things plus I know there will be many, many blog posts about our experience throughout all her therapies. Part of my blog is not only to provide helpful information but also to seek advice/help from others. Perhaps someone who reads this has experience and can offer helpful words. Being able to vent here also helps me. It helps me let out my stress and failure feelings instead of keeping everything bottled up inside. I’m sure my thoughts came out a little random and jumbled up as I typed, my fingers can’t quite keep up with my thoughts right now.