Living With Sensory Processing Disorder - A Family Affair

I. A child's view on how SPD effects family relationships
Living and coping with a disorder can often consume a child's world. For children with Sensory Processing Disorder (SPD), this can be especially challenging as most children with SPD are seemingly "normal". Many people do not often realize that these normal-looking children could be plagued by such an emotionally, physically and socially taxing disorder. Emily Brout knows all too well how difficult it is to explain her disorder: "Sometimes it is really hard to explain what Sensory Processing Disorder (SPD) is to other people. It's very complicated and it's not even easy for me to understand! Many people don't know anything at all about SPD because there hasn't been a lot written about it or on T.V. So most people have no idea how SPD makes a person like me feel. In fact, there are many people who don't even think SPD is real! That makes me so mad! Why would anybody make this up?"
Having SPD makes family life and social time with friends tough on Emily. "SPD makes me feel like I'm being attacked by noises, smells, and lights every day. Smells can be really bad, and sometimes even make me throw up. It is very hard to sit in the cafeteria with my friends at school and try to hide the fact that I am gagging because of a smell. Noises are the worst for me. Quiet noises that repeat over and over make me really upset, and these noises are part of every day life. My sister and brother get mad at me because I yell at them for noises that they make. Sometimes, I get really sad and don't want to go anywhere. I also lose my temper and get really mad at people. I don't do this on purpose, but my friends and family don't always realize that. I just cannot help it. Every day I struggle to keep myself calm even though I feel scared, mad and upset on and off, all day."
Coping with a special need such as Sensory Processing Disorder can be equally frustrating to both the child and his or her family.
II. A parent's perspective on raising a child with SPD
Emily's mom, psychologist Dr. Jennifer Brout, can identify with trying to cope with raising a child who has a special need and maintaining her family dynamics. "A wise professor once told me 'Your primary goal is to not make things worse'. As I consulted psychologists and psychiatrists alike, I wondered if there were any clinicians who even understood what Sensory Processing Disorder (SPD) was!" said Brout. "My daughter received Occupational Therapy to remediate her symptoms, yet her personality and our family dynamics had already been shaped by the disorder's complications." Dealing with this frustration and lack of help from mental health professionals who had no real treatment for her daughter, Brout often wondered, "was there anyone out there who would understand that I was not simply giving in to my daughter's 'manipulations' because I was a browbeaten mother lacking any savvy?"
Everyday life posed so many difficulties and heartache for Brout, as a parent who had to watch her child struggle with SPD. "Although her other senses were affected, extreme over-reactivity to certain sounds caused my otherwise sociable, empathic sweet-natured little girl to be unpredictably moody and explosive. During toddler hood and early childhood she threw tantrums that lasted for prolonged periods of time. She was extremely clingy, and often appeared sad. Background noises that most people didn't notice set her off into rages." Not being able to ease a child's suffering could leave any parent feeling helpless. Brout remembers one of those moments with Emily, "when she was six years old she looked at me and said 'When I hear bad noises I feel like I'm turning into the Incredible Hulk'. Then she asked intently, 'Mommy, can you fix my brain?' This moment defined the extent to which my daughter was suffering, and how negatively her self-image had been impacted by SPD. What little girl should envision herself as a huge, green, out of control mutant?"
What can a parent do? How can a parent mediate Sensory Processing Disorder within family life?
For parents coping with their child's SPD, Brout offers this advice, "it is helpful to remind yourself that with Occupational Therapy, sensory integration treatment, and as he or she gets older, your child will be able to implement greater control over his or her behavioral reactions to his or her physiological responses. In the meantime, however, regulation (calming the child so that he or she is not over stimulated and agitated) is the first priority." She goes on to suggest that in order to make this shift, "you must allow yourself to dismiss much of what you have been told about parenting, even by mental health professionals, because it does not apply to SPD children. For now, think of your child as one whose body over-reacts to sensory stimuli, and who is deficient in calming down." When faced with an agitated child whose behavior is effecting family life, Brout suggests using the three R's: Regulate, Reason and Reassure
Regulate: "Help your over-responsive child calm down by identifying the source of the sensory stimuli, and shift the focus from any resulting conflict. As a child develops greater language and cognitive skills this process becomes easier. However, even younger children with limited language skills can be regulated. Each child is unique which is why it is essential to consult with a professional."
Reason: "Once your child is calm, review the incident with him focusing on his thought processes. If he cannot identify the stimuli that triggered his actions, try to do it for him by making suggestions. For younger children, you will have to go through this process with relative simplicity and brevity. With enough consistency your child will understand your message, and will also learn that when he or she is over-stimulated, calming down is the first step! Remember, this process is not an over-night cure!"
Reassure: Remind yourself that your child does not like feeling out of control. Reassure him that over time he will gain control, and that you will help him. Let him know that you expect him to try as hard as he can, but protect his self-esteem and self-image by framing the problem as though it were 'a work in progress'. Repairing damaged self-esteem and poor self-image is much more difficult than reshaping a child's misconstrued ideas about the causes and consequences of behavior. No child should see himself as a huge out of control green mutant being that repels others!"
In regard to family dynamics, Dr. Brout states, "the SPD child feels victimized by the overwhelming sensory stimuli generated by family members. However, siblings are also likely to feel victimized having often been the object of the over-responsive child's mood swings and/or aggression. Therefore, it is important to let siblings know that they are not responsible for these problems and that you are doing everything you can to get help for your over-responsive child and for the family. Behavior is not only about actions and consequences. It is about interpersonal relationships and that is especially true in regard to SPD as it affects family functioning."

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