Sensory Processesing Disorder: My Daughter's Story

I saw an awesomely descriptive blog post, Sensory Processing Disorder: What it is and How to EMPOWER our children on Mom-Blog and wanted to share my daughter's story to open up the eyes of parents who may have undiagnosed children, as well as spread awareness of the issues that children with Sensory Processing Disorders go through. I hope this helps someone out there.

At two years old, I knew that there was something "off" about my daughter. She was one of the most beautiful girls I had ever seen in my entire life (oh, yes and still is! I mean, look at the picture!), but her reactions and behaviors were completely irritating sometimes, if not strange and offbeat. There were things that she would do that would drive me up the wall and make the think, "What the heck is wrong with you?"

Lacking the Ability to Follow Simple Directions

For instance, if you were to hand my daughter a piece of trash and then tell her to put it in the trash can and then wash her hands (at three years old), she would get halfway to the trashcan and turn to me like she forgot what I told her - and she had "forgotten"! (Or, shall I say, it went into her ears, but did not connect with her brain. This is the Auditory Processing part of the Sensory Processing Disorder). Two-step directions did not jive with her at all, let alone three steps, and forget anything beyond that!

Speech Delay

Her speech development was behind at three years old, so my husband and I enrolled in her in awesome speech development program through Child Development Services in Arundel, Maine. Her speech therapist, Rita, was one of the most awesome people in the whole, entire world! She worked with Veronica, completed a ton of assessments and finally came up with her final evaluation: Veronica had an Auditory Processing Disorder.

We had never heard of such a thing! And, remember, this was 7 years ago. So, I started reading up on the Internet and in books and asking a million questions to find answers. To this day, I still do not completely understand the entire concept of Sensory Processing Disorders - and to be quite honest, if you do not have one, they are definitely difficult to understand and relate to, let alone recognize.

In addition to her speech delay and auditory processing disorder, she would walk up and down the stairs one stair at a time, meaning that she would step onto a step and then bring the other foot to meet the leading foot. This was on every step that she took, rather than stepping on one step and then bringing the other foot to the next step. She was also very bow-legged, and to this day at ten years old, still walks with inward turned toes. 

What Did I Do Wrong???

Once the mystery was unveiled, I felt terrible as a mother. Was there something that I did wrong? Is this my fault? I think, as parents, we automatically start questioning ourselves, and our parenting, when there is something wrong - *ahem*, different - with our children. We dig through our pregnancy, the first hours after they were born, food that we have fed them, places we exposed them to, desperately seeking theories and resolutions that will explain why...and, most likely, we come up with nothing.

But, that wasn't all...I was so terribly mad at myself for the times when I became overly frustrated with her. I beat myself up, immediately recalling the times when I was so frustrated with her lack of reaction, and what I assumed was complete disrespect, when I asked her to do something. I hadn't spanked her, but there were so many times I remembered raising my voice and yelling at her for not doing what she was told. I wanted to just hug her and hold her and take back all of those times...and tell her I was sorry.

Mommy's sorry, my precious little girl!

But, I couldn't. I couldn't take back the frustration, the yelling, the tears, her utter confusion. The only thing I could do was educate myself and be understanding in the future...and help her face life with her differentness...

More Issues

Although we (that would be my husband and I) finally knew that she had an "Auditory Processing Disorder", we were not aware until many years later that there was more to the story. When she was eight, she hit the brick wall in third grade - in other words, she started to struggle tremendously.

She couldn't focus in school and often came home with no understanding of the concepts discussed in class. After several visits to the doctors and evaluations with her teacher, she was diagnosed with ADD.

For those of you who do not know, I will make it simple:

ADHD is the attention deficit (lack of focus), plus hyperactivity (overly active) disorder, while ADD is more about the lack of focus, so she's not bouncing off of the walls - which would have been a great indicator of ADHD...ADD was more difficult to recognize, in my opinion.

After a long struggle with whether or not to give her medicine, I had a talk with her and left the decision up to her (don't judge me). I was opposed to giving children drugs, but if it could help...who was I to say no?

She decided to try the medication, but that was short-lived (maybe two months), as it didn't seem to make any difference...and why give our children drugs when they don't make a difference?

Alternatively, I worked hard to explain to her that her brain works differently than other people's brains - including her siblings - and that she would have to work harder than others to succeed in school and life.

Even More Discovery...

It wasn't until recently, about a few months ago, when we had a meeting at the school with the guidance counselor to discuss issues that were popping up. (We are, of course, our childrens' biggest advocates and allies.)

Firstly, our daughter was experiencing difficulties with another classmate, but she was also having trouble in school again. We had moved from North Carolina to New York...and, apparently, the whole section about her auditory processing disorder and ADD did not come with her school records when she transferred.

So, the school was clueless. It was time I clued them in...

As I was cluing the guidance counselor in on my daughter's issues, she revealed that she, too, had sensory processing issues. She said that showering was like pins and needles on her skin...it literally hurt.

Wow! I had never heard things from that side of the fence before!

Then, it hit me! It was like pulling teeth to get my daughter to take showers and baths...it was like swimming against the tide to get her to take her personal hygiene seriously, let alone do it at all. She hated (and still hates) brushing her hair and taking a bath or shower...and I had no clue why...until that day, as I had only really focused on learning about auditory processing disorders.

Sensory Processing Disorders

Sensory processing disorders (also known as sensory integration disorders), like any other disability, are not easy to understand if you don't have one. They're even more difficult to recognize, especially if you have no idea that they even exist. I like how the Sensory Processing Disorder Foundation describes them:

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. 
 
They go on to explain that essentially everything that we do requires a sensory response and that people with sensory processing disorders can experience issues with just one form of the senses or a combination of many.

For example, some people with sensory processing disorders hate wearing clothes. The sensory issues that can occur range from what they perceive as minor irritation to extreme pain. As the counselor at school had analogized, the water that was hitting her in the shower was like a bunch of pins and needles or knives on her skin.

Misdiagnoses

According to the Sensory Processing Disorder Foundation, many children with SPD are misdiagnosed, due to the lack of training and knowledge about these disorders in the medical industry. And, 1 out of 6 children experience sensory processing issues, according to the Sensory Processing Disorder Scientific Work Group.

I am grateful to Rita, our daughter's first speech therapist, for opening our eyes early in our daughter's life. Had she not known about SPD, we might still be struggling today to give our daughter the encouragement and understanding that she needs - and deserves - to become the most productive person that she can be, despite her difficulties.

Because Rita caught it early, we were able to alter our parenting techniques to help our daughter become a child who thrives throughout her life, rather than struggle. I'm not saying that she is successful all of a sudden and has absolutely no difficulties anymore. No, that's far from the truth.

But, with the knowledge and understanding that we now have, we can maintain our patience and understanding and encourage her through life, despite her difficulties. Our main goal as parents is to raise our children to become successful adults, however some children are not born with all of the "normal" abilities that others have. So, we have to work around the difficulties and teach our children how to thrive the best that they can, just the way they are. 

Keep fighting that fight, girl! Life is what you make of it, not what it dishes out to you.

Update 1-9-2012: Veronica is thriving at her current school this year, in 5th grade, with no prescription drugs. She's an extremely talented singer and aspires to also become a musician with her new guitar.