http://www.digitaljournal.com/article/301545

Author Chynna Laird Tells about Sensory Processing Disorder Special

Posted Dec 18, 2010 by Ernest Dempsey
Canadian author and student of psychology Chynna T. Laird tells about Sensory Processing Disorder (SPD) and her experience of it in her own family.
Chynna T. Laird is a mother of four and a freelance writer based in Edmonton, Canada. She is studying psychology with focus on early childhood development. After her daughter Jamie suffered from what appeared to be an extreme case of sensitivity, Chynna had to work hard in finding the answer to her child’s developmental problem that seemed to be a somewhat mysterious psychological issue not yet recognized as a disorder. Chynna ultimately found that Jamie was suffering from what has been termed ‘Sensory Processing Disorder’ (SPD), which is not included in the DSM. Based on her experience with Jamie’s problem, Chynna authored the book Not Just Spirited: A Mom's Sensational Journey with Sensory Processing (Loving Healing Press, 2009). Following is my e-interview with this wonderful mom and writer about SPD and her experience of it in her family.
Ernest: Hello Chynna and thank you for joining me! First of all, please tell a little about yourself, like you educational and professional background.
Chynna: Ernest, I’m so happy to join you and so appreciate your support. I’m a mom of three beautiful girls (Jaimie, almost eight; Jordy, six; and little Sophie, two) and a gorgeous boy, Xander (four). The five of us, and my partner, Steve, live in Edmonton, Alberta, Canada. Before having Jaimie, I worked as a Litigation Paralegal for almost 10 years; then began studying for my Psychology degree shortly after she was born. I’m also a freelance writer and author in my ‘spare time’. Above all else, I have a tremendous passion for helping special needs children and their families, especially those living with Sensory Processing Disorder (SPD), which is the focus of much of my writing work.
Ernest: We may start with the point in your story, as you tell it in your book, where you first suspect that Jamie’s case wasn’t that of some common developmental disorder. What were your unique observations in this matter?
Chynna: I knew in the hospital after having her that something wasn’t quite right. I can’t explain it — I just knew. She was very fussy, cried most of the day and night, and seemed so anxious. But because she was physically healthy, everyone — including the nurses and her doctor — dismissed it as ‘normal’ newborn stuff. But as she got older, her ‘symptoms’ worsened. She refused any sort of touch; she fought hygiene tasks like bathing, hair brushing, teeth brushing, changing her diaper, etc.; she gagged and threw up a lot; she avoided any sort of social interaction; she was fussy about toys, noise, lights, and so much more. And her reactions to things were so intense, bazaar, and, oftentimes, aggressive. The most upsetting and frightening for us was when she started hurting herself. She rammed her head into things, scratched and bit her skin, clawed at her eyes and ears, pulled her hair out, etc. Of course, we missed the ‘Why’s’ back then. For example, she pulled her hair out when we went out in the wind; or she scratched her skin when something touched her and it didn’t feel good. Her sensitivities were, and still are, so severe she just couldn’t deal with it. And she was trying to tell us in her own way that something was wrong… something was scary, and “Please help me!”
Ernest: So how did you first learn the problem haunting Jamie was SPD?
Chynna: Jaimie was about two and a half years when an occupational therapist (OT), Donna, first came to our house and recognized the signs of SPD. She was so wonderful in giving me information, books, and places to research. Unfortunately, it would be another 5 years before we met the right people to assess, evaluate, and diagnose Jaimie properly (I say ‘right people’ as just because a person has a professional designation, it doesn’t mean they are knowledgeable about nor experienced with sensory processing and/or SPD. That’s essential!). Donna wasn’t trained to do the assessments, etc, but tried desperately to get us connected with people she thought would. It took a long time but we got there! My initial thoughts when Donna ‘introduced’ us to SPD were mostly of relief: Finally we had a name for what was going on with Jaimie. It was real! Then I was angry that not one person, including our pediatrician, listened to us sooner. I was sad for Jaimie because she’d been trying and trying to tell us something was wrong but we didn’t understand. And I was fearful that the longer we were prevented from getting her the help she needed, the worse she’d get. It’s a real mix of emotions but I used them to keep moving forward.
Ernest: Tell us in some detail how SPD differs from AD/HD or other developmental disorders which commonly afflict children.
Chynna: Sure. SPD shares some symptoms with other developmental disorders such as Aspergers, Autism, or ADHD. This is called comorbidity. Essentially it means that there are SPD symptoms (e.g. low eye contact, clumsiness, social issues, inability to sit still, self stimulating — rocking, rubbing, arm flapping — odd behavior, odd/intense reactions to sensory stimulation, aggressiveness, etc.) shared among these other disorders, but that SPD is also its own disorder with its own assessment, diagnosis, and treatment. A great way to explain it is by using a quote I heard once from a psychologist specializing in SPD individuals. She said, “Most children with Autism have SPD or sensory related issues, but not every child with SPD lives with Autism.”
That’s why I mentioned earlier how crucial it is to find professionals who are trained in SPD and these other developmental disorders. Going through this journey with Jaimie, and now with Xander (who was diagnosed with SPD this past fall), I finally understand that these disorders are like little puzzles. There are smaller puzzles with their own separate pieces (or symptoms) that don’t always fit together with other ones — they are their own separate ‘puzzles’ (or disorder), like SPD, ADHD, PDD, etc. Other times, these smaller puzzles are actually pieces (or symptoms) that fit together as part of a larger puzzle, such as Autism or Aspergers. With Jaimie, she has SPD or sensory ‘piece’ most strongly and although we are still concerned with her ‘social’ piece, (and she’s currently being assessed for that) for the most part, SPD is her ‘puzzle’. Xander, on the other hand, has a sensory piece, a speech/language piece, and a social piece, and therefore needs more assessments to determine whether everything fits together or he has little puzzles like Jaimie. It’s confusing but makes sense after you’ve been dealing with it for awhile.
Ernest: I remember asking, does SPD also affect adults?
Chynna: Absolutely! I have two friends who lived with SPD their entire lives but didn’t know it until they’d grown and had children struggling with SPD. As children, my friends were always just labeled as ‘eccentric’ or different, or difficult, etc. But once in adulthood and, either on their own or going through a ‘sensational’ journey with their child, recognized certain things in themselves and got diagnosed. This happened to me too, actually. Once Jaimie was in Sensory Integration therapy, I recognized some of my own ‘sensory stuff’ and remembered, “Hey! I struggled with that too!” In fact, many of her exercises help me too! I don’t know what the exact figures are for its occurrence in adults but I know that if a child goes undiagnosed and untreated in childhood, it carries on into adulthood where the adult still has difficultly coping with sensory stimuli effectively. There is more information about this at the SPD Foundation website www.spdfoundation.net.
Ernest: Okay, it follows from your book that SPD is a serious problem thrusting in the way of one’s social life. What aspects of the child’s social life does it affect most seriously?
Chynna: Obviously, I can’t speak for all children as the symptoms are individual to each child. But with Jaimie, who is an avoider (someone who actively avoids any sort of sensory stimulation), she anticipates being over-stimulated every moment of the day. So she wouldn’t interact with other children or adults, avoid touch, avoid crowds, wouldn’t let people sit too close, no hugging, no sharing (which isn’t unusual for kids but she wouldn’t even touch things other people have in case it got smelly or wet or dirty, etc). It can be very lonely as the child never knows who they can feel comfortable with. She never knows how that person will make her body feel. I tell people to think about something that scared you so much that even just thinking about it makes you scared. That’s how bad it can be for Jaimie. And because all seven of her sensory systems are affected from Moderately to Severely, she has had negative responses to almost everything — and remembers those experiences. Plus, she can’t always explain why things bother her so she says nothing or melts down and other kids don’t understand what they’ve done or what to do to make her feel better. She’s only recently been having more positive experiences with things she was terrified of before (e.g. touching certain textures, allowing others to get close to her, trying new things, etc.)
On the other side of things, of course, is when a child is more of a seeker, like Xander. He touches everything, bumps into things and people on purpose (to ‘feel’ them), smells everything, hangs on things (and me!), talks loud and close (which is irritating on its own, right?). People may react to those things negatively too, which can cause a child to be shut off for being annoying and never knowing when to stop.
Ernest: Because it gets in the way of communicating with others, it might be posing strong barriers to learning, right?
Chynna: Absolutely! There are several elements about SPD that can interfere with learning. First of all, if a child has anxiety about communicating her needs because she herself doesn’t understand what’s wrong, like Jaimie, learning can be affected because she can’t ask for help or say she’s having difficulties with an assignment. These children can also have praxis issues, like Dyspraxia, which interferes with a person’s ability to start/stop a task, follow instructions, thinking about an idea and following through, etc. A child may need extra stimulation, such as fidgets (keeping hands busy) or a textured seat cushion to help focus or need extra vestibular/proprioception input during the day (Jaimie needs it every 60 to 90 minutes). He may have auditory issues (BIG for Jaimie!) where he can’t tune out anything to focus on the teacher or a task at hand (sound reduction headphones work great for Jaimie!). [As a sidenote: From what I understand, many children with auditory issues also have vestibular struggles as well. The sensory system in the inner ear controls things like balance, coordination, body awareness, etc, so when auditory is off, the vestibular system may also be off. Something teachers should watch for.] And throughout all of this, he may not have the words to tell teachers what his needs are, which in itself causes a barrier. Many of the kids, Jaimie for sure, have strong barrier issues where they can become defensive when they are crossed. For example, if people sit too close to Jaimie or lean over her, etc, she reacts with shoving or yelling a lot of the time. There are strategies to help in all of these areas but teachers need to understand them and allow the strategies to be used in the classroom.
Ernest: And it goes without saying that the parent’s, or caregiver’s, own family and social life would fall in difficulty.
Chynna: For sure. It can be very difficult on the entire family. Siblings are often the ‘punching bags’, emotionally and physically, for a ‘sensational’ child’s outbursts, Jaimie’s younger siblings are (especially Xander who is the sensory polar opposite to her!) Parents can become so consumed with the child’s needs (e.g. therapy appointments, sensory diet regulation, etc.) they forget about themselves individually and as a couple. Siblings can also be jealous of extra attention the affected child gets, be embarrassed by their behavior or even paranoid of how to act around their ‘sensational’ sibling because they never know if their presence will be welcomed or rejected. Jordy, Jaimie’s younger sister, has been tremendously impacted by her sister’s behavior. We never had people over or went out anywhere because we were never sure how Jaimie would react or how others would respond to her reactions and behavior. Things have gotten better through therapy because Jaimie has learned how to cope and we’ve learned how to make things better for everyone but it was very difficult in the early years.
Ernest: The DSM is yet to recognize SPD as a separate disorder. Why hasn’t it been in the DSM disorder listings so far?
Chynna: Ernest, this is a phenomenal question that I, and parents around the world, have asked over and over. The truth is that I’m not qualified to give you a solid answer for this because it has a lot to do with professional and political conflicts and issues beyond my level of experience. What I can tell you is that those who fight having it included are mostly professionals who don’t believe it is a separate disorder but part of other disorders, such as Autism —kind of like my puzzle analogy earlier. It’s really frustrating but it’s slowly getting better as more and more professionals are paying attention to the articles, interviews, books, and research SPD researchers and advocates are putting out there, realizing that it is real and that so many children and adults are living with it. You know, I had the pleasure of interviewing Dr. Lucy Jane Miller recently for my blog. (Dr. Miller is an OT who studied under Dr. A. Jean Ayres, who actually discovered SPD and began the pioneer studies and research. It is Dr. Miller who has carried on this vital research.) Dr. Miller opened my eyes to so much, not only about SPD but the research and why she and her team are doing what they do.
These researchers aren’t doing what they do for fame or fortune. They’re doing it for us, for the children and families around the world living with this complicated disorder. I’m tremendously grateful to Dr. Miller and her team, as well as to the SPD Advocates who are out there fighting for us. They’re doing this so other families don’t have to go through what mine did, as I described in my book; they’re doing this so caregivers have a much shorter route to getting the right help for their children; they’re doing this so professionals can not only understand SPD but also be trained in recognizing, assessing and diagnosing it; and they’re doing it so that families can have support and coverage for the thousands of dollars they currently pay out of pocket for critical sensory integration based OT they need to cope properly. Most importantly, they are doing it for these children and adults so they can finally be understood and respected.
Ernest: What category of disorders you think the SPD should be placed in DSM in future?
Chynna: As I said, I’m not qualified to give an ‘expert’ opinion on this but, as a parent, I can say I think it should be in the Neurological Disorder category. When I was pregnant with Jaimie, I had many, many ultrasounds. On every single one of them, Jaimie’s brain was ‘structurally perfect’ and yet she was born with (yes, I believe she was born with it because she displayed symptoms so early on) this disorder that interferes with how her brain and nervous system function. That means it’s more of an ‘electrical’ (e.g. neurotransmitters, neurons, etc.) problem rather than a ‘structural’ one. And it’s why doctors won’t find that ‘medical explanation’ for these issues and often mislabel it as a ‘behavioral’ issue. I hope, one day, to be a researcher so I can study children’s brains, like Jaimie’s so I can understand, help, and be more educated and, in turn, educate others. As a psychology major, I know that research spawns further research because it must be verified and/or falsified to continue. If SPD is in this category, this can happen because, hopefully, more people will want to understand what’s going on under the surface. I’d love to!
Ernest: So what are the best treatment options for SPD?
Chynna: This is individual to the child’s form of SPD but the number one treatment is occupational therapy with a therapist who has been educated and trained in sensory processing, SPD, and how the nervous system works. OTs can also help with eating issues (since many children struggle with eating issues due to poor motor and proprioception skills), praxis problems, organization, transition and so much more. From there, caregivers have a variety of holistic approaches they can follow. Integrated Listening Therapy (a form of therapy both Xander and Jaimie use) helps with vestibular and auditory issues. Music therapy, other forms of listening therapy, chiropractic, Reiki, Hippotherapy, and so many other options (see the SPD Foundation’s Website). I list several options in my book and will discuss so many others in my next book I’m working on about the sensory diet.
Ernest: And what are parents/families to do in case they have one or more SPD patients in the family or home?
Chynna: This is a timely question as we just found out recently that our son Xander also has a rather severe form of SPD (and we are concerned about our daughter, Sophie, as well.) Believe me, I understand how overwhelming it can be, especially when you have children that are on the opposite ends of the sensory line (Jaimie is almost exclusively an ‘avoider’ while Xander is almost exclusively a ‘seeker’, plus Jaimie still also deals with tremendous anxiety while Xander needs additional treatment for speech/language, behavioral, speech and eating (the mechanical side of eating) issues. They are both seeing a nutritionist as well to help me make sure we’re giving them all the nutrients they need (Jaimie still struggles with textural issues with eating). My advice is to do what can be done all together to meet the kids’ sensory needs (e.g. a great tip is getting out to the playground or swimming pool… such activities get kids working on all their sensory needs without even realizing it!) then do what needs to be done individually as you can. Never be afraid to ask your OT for guidance, additional help, or advice. They are very knowledgeable and will help you create the best possible Sensory Team!
And you know what else? When a second child is diagnosed, it can be very stressful and overwhelming but parents will already be past the ‘learning’ stages. Caregivers would only need to learn the ins and outs about the next child’s unique form of SPD — half the battle will already be under their belt!
Ernest: Finally, how’s Jamie doing now on the recovery front and what hopes you stock for her future?
Chynna: Thank you for asking, Ernest! Since she began her therapy, she is slowly learning to cope better in her environment and with the people in it. We have a solid Sensory Diet (a set of exercises/games prepared by the OT and the parents; it’s unique to the child’s interests, abilities, and sensory input needs) that I know how to change as her needs change as well as a topnotch Sensory Team to help with all the different areas of Jaimie’s form of SPD. She is currently undergoing assessments for her social issues, which have pretty much been steady throughout her life, but we’re hopeful we’ll be able to teach her great skills to cope in this area as well. As I said, she’s slowly getting out and trying new experiences: she gets dressed herself, has a shower, brushes her teeth on her own, and has even started eating lunch at school and having play dates!
Our experiences with Jaimie helped us learn how to help Xander more effectively and got him help a lot sooner than what we were able to do for Jaimie. They are both doing well in school (Xander is in preschool, Jaimie in Grade Two) and Jaimie is doing exceptionally well in reading and story telling. Her Dyspraxia interferes with how she’s able to do certain assignments and she still struggles with transition but I expect nothing but great things for both she and Xander in the future.
Ernest: Many thanks Chynna! I wish you and your family the best in future!
Chynna: Thanks so very much, Ernest!