What is Sensory Processing Disorder, or SPD? When Michaela was first diagnosed with this disorder, it was called ‘Sensory Integration Disorder’. The name has since changed, but the condition remains the same. It is the inability to sort and organize sensory signals into appropriate responses (1). This is a very frustrating disorder and presents many challenges for anyone who has been diagnosed.
According to Ahn, Miller, Milberger, McIntosh, 2004 (Prevalence of Parents Perceptions of SPD 2004) a study of a parent’s perception of their kindergarten child, assessing the child’s criteria for sensory disorders; shows that a significant percentage of children present with the listed criteria and suggests the need for more complete studies regarding sensory processing disorders.
Having SPD affects every aspect of your life. Imagine looking for a can of coke on a white counter top. Your eyes see the can of coke but your brain doesn’t register that it is there on the counter top. Or, imagine touching a hot stove but your fingers never feel the heat of the burner. These are just two examples of experiences my daughter has had with SPD. Michaela loves competing in basketball tournaments. When she first began playing basketball, it would take her quite a bit of time for her to process that someone had passed the ball to her. You would be able to literally see that in her actions. She would stand there, ball in hands, with an expression almost as though she didn’t know what to do next. But, it wasn’t that. It was the fact that her brain needed time to process and send the message to her hands that she had a ball in her hands. It has taken her almost seven years of repeatedly practicing ‘receiving and shooting’ in order for her to be able to complete this task with minimal hesitation.
SPD doesn’t necessarily affect everyone in all of the sensory areas; it may be only one area that suffers. Michaela’s SPD involves sight, touch, smell, hearing, movement, and taste. She is highly sensitive to light, she doesn’t always process what she touches and does not care to be touched; especially on her back, she is able to smell and hear what others can’t, she is extremely sensitive to different tastes, and she has uncontrolled movements in her hands when she becomes stimulated; or excited..
Schooling for individuals with SPD can be extremely difficult and frustrating. When you consider the teacher to child ratio, there is not a lot of time available for teachers to find the teaching tool that best suits an individual child, leaving the child to fall behind in learning, thus creating more issues for both the child and the school. I first began to home school my daughter in 7th grade. We went through a very frustrating period of time, trying to find the different teaching methods that were the most beneficial for her specific needs. On top of that, not every method worked for each subject. We spent months individualizing her schooling needs until we found exactly what it was that she needed to actually learn and retain the material.
It’s difficult for others to understand this disorder. It may present symptoms similar to ADHD, or neurotic ‘ticks’. This can lead to social isolation and feelings of depression (1). In our experience, I have watched people move away from my daughter when her hands begin to ‘open and close’ uncontrollably; others have become offended when Michaela has pulled away from them when they place their hand on her shoulder or back.
The cause of SPD is still being researched. Some believe it is inherited, while others contend it could be environmental; no research shows clear evidence of what the exact cause is. Unfortunately, SPD is another under diagnosed disorder, leaving the child vulnerable to becoming a social outcast creating an altered self-image; having a difficult time being educated; and being labeled early in life as uncontrolled or disruptive (1).
The primary treatment for SPD is Occupational Therapy with emphasis on sensory integration. With SPD being a relatively new diagnosis from 1972 when A. Jean Ayers first published a book regarding this condition, the symptoms may vary, but essentially all of the symptoms involve difficulty processing the information that comes into the brain (2).
I believe one of the most difficult hurdles we had to overcome raising a child with SPD is learning to determine what actions and reactions were actually parts of the disease process, and what was normal child manipulation. As a parent, it is a normal response to want to defend your child when accused of creating havoc, especially in the school system. It was hard for me, sometimes, to remain objective. This was my child and I realized her capabilities and restrictions, and this was not always an easy task to convey to others. I will admit that as she has grown older, this process of analyzing her actions has become easier. In my daughter’s case, she realizes that she reacts and responds differently than her friends. She continuously questions why she does this, and it saddens me that I have no concrete answers for her.
What has been your most difficult experience with SPD? What mechanics have you found to be the most effective in your family?
Also see What Should be Included in a School Health Plan
1. About Sensory Processing Disorder
2. The Next Attention Deficit Disorder
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Having met Michaela I saw personally some of the struggles.. I do remember one touching moment when Micaela got close to me and rested her head on my shoulder.. I remember tearing up at that point.. and then she made many braids in my hair.. I enjoyed Michaela very much and have come to love her…Way to Go mom raising such a beautiful daughter even with the struggles…..As always…XOXOXOXOXOXO
Bonnie, most people don’t even notice Michaela’s symptoms of SPD unless they are around her for quite awhile. This is not a disorder that you tend to pick up on spending short amounts of time around the afflicted person. This can make it even more difficult when dealing with the school system at first because they are observing the child during a meeting and looking at you as a over protective parent. I can’t tell you the number of times that school personnel, and even family relatives, basically told me that they couldn’t see anything wrong at all. But, if you are around her for any length of time, you will begin to notice little things here and there that are recognizable symptoms.
The ‘hair’ was definitely the tactile aspect of it. I can remember the tiny braids she made from your hair. I’m sure she has never had that length of hair to work with before LOL.
This is a great article that touches upon what SPD is. My son has severe ADHD, Central Auditory Processing Disorder, and I suspect some SPD too, thought that hasn’t been diagnosed. It’s so hard with these types of conditions because so many people don’t understand and just think our kids are bad, aren’t trying, or that they simply don ‘t care. But they do! They just learn and experience things differently. I’m glad I found you through the Ultimate Blog Challenge!
Janis, I understand what you are saying and that is what makes it so difficult for parents. We normally want to protect our children and I have found in the past when trying to explain SPD to another parent they act as though I am making excuses for my child, when in fact I just want them to understand the condition. It amazes me that we don’t hear more about SPD in the media. Children with SPD are often misdiagnosed with ADHD and put on medication. Often the two conditions go hand in hand, but when SPD is missed in diagnosing, the child has a difficult road ahead of them. SPD does require a ‘different’ way of teaching, and a unique way of sharing.
If you are interested, I have written a follow-up article on treatment and prognosis 🙂
Such a touching and enlightening article, Mary. Thank you for sharing and educating all of us about this condition.
Blessings!
Unfortunately Martha, this happens to be one of the disorders that doesn’t get much attention in the media, so the understanding of it is not what it should be. For most of Michaela’s life, she has been looked at as a ‘problem’ child, whereas her actions have been a result of her disorder. In school, they immediately put her in ‘time out’ or sent her to the principal, when instead she needed to be taught and encouraged to react in a more productive way. I can’t hardly blame the teachers though. Unless you have training to specifically work with SPD in children, you don’t have the tools to be effective. It’s sort of like going out to work in the garden and you don’t own any garden tools 🙂
what a situation you’ve found yourself in and congratulations on speaking out about these complicated medical issues. the coping mechanism to daily life in your home should be shared with us all. keep up the good work mary 🙂
Tbaoo, it seems the food allergies and Celiac are topics that I can easily and readily talk about, but the SPD is something that has actually been more difficult for me to discuss. People hear about food allergies and Celiac and can at least understand where you are coming from. When I try to explain to other parents what SPD is, they just sort of look at me like I am just making excuses for my daughter. It is very trying at times. Michaela is a child that would do anything for anyone, and it breaks my heart to see parents look at her as though she is a troubled child, or better yet…just needs a good butt whooping…yes, I have had parents tell me that. Very sad that we, as adults, get into a mindset about ‘how’ things should be and can’t imagine anything else.