Not Just Spirited

by Chynna T. Laird

  (9) Eggs contain a nutrient called choline. To get a bit technical, choline is needed to create acetylcholine, which is good for memory. Jaimie doesn't like the texture of eggs but we add Omega-3 rich eggs to her muffins, pancakes, and baking treats.

  (10) Tempeh is a fermented soybean cake similar to tofu. Yes, it sounds gross and you'll definitely have to disguise it in other things but it is such an awesome source of protein and B12. The great thing about it is it absorbs the flavor of whatever you cook it with; so try adding it to stews, soups, or stir-fry.

  Aside from the fact that we were a household with both nut and fish allergies, the most challenging thing had been coaxing Jaimie into trying anything new. Her palate was so sensitive that she'd actually thrown up right at the table simply because something didn't feel right on her tongue. Her diet, for the longest time, consisted of plain pasta, green apples, and plain bagels. As time went on—much, much later in her therapy—we'd gotten her to try muffins (that I'd “brain-ified” with flax seed oil), homemade pasta sauce (which I'd shredded veggies into), chicken and, even pizza—all of which we'd tweaked one way or another. At that point, I considered any meal where Jaimie tried even just a lick of something new a huge success. But it wasn't just Jaimie's eating that needed more attention and changing. There were other problems we'd been ignoring.

  Even though SPD was Jaimie's disorder, the rest of us were greatly impacted by certain aspects of it. Most specifically was how isolated we'd all become.

  There were days when leaving the sanctity of our house was too much for Jaimie. When things were a real struggle for her, she wasn't able to handle a light breeze on her skin or the wind blowing her hair or even how bright the sun was. On days like that, I wouldn't even be able to get her to go out on our front lawn, never mind going out on a more exciting adventure.

  There was nothing wrong with staying inside once in a while but there seemed to be more days inside—in the safety and familiarity of our house—than those outside. And I understood her need to stay close to home when she didn't feel brave enough to venture out. But I worried about poor Jordhan.

  At two, Jordhan's verbal skills weren't off to a great start and she was painfully shy. How was she supposed to practice being around other people when she wasn't exposed to them as much as she should have been?

  Another thing was, and I feel horrible even thinking about it now, that Jordhan thought all kids were like Jaimie. She was scared to talk with, get close to, make noise around, or play with other children, and I knew something had to be done about that. It wasn't fair to keep her cooped up in our house all the time just because Jaimie wasn't able to cope with things on a certain day. And I understood how she felt—even I felt the need to be around other people.

  Plus with the new baby due in the fall, it would be a lot harder to get out and about. I wanted to get out and have fun with my girls while it was still easier to get around. But just as I'd found an appropriate playgroup for us, Jaimie had another setback.

  It got to the point where I couldn't even force her outside even to take the cab to see Brian. One morning, prior to one of our last sessions before the summer, I phoned to cancel our appointment because Jaimie refused to leave the house. He counseled me over the phone.

  “Perhaps we've been pushing her too far too fast,” he suggested. “We've been trying to prepare her for the baby, she'll be starting her pre-preschool class; she knows our sessions will be ending for a few months…we don't think of it but these are all very large transitions for Jaimie.”

  I didn't answer.

  “On days, such as today, where she may not be brave enough to venture any further than the front yard, that's just fine,” he continued. “We'll just give her a lot of praise so, maybe, she'll be brave enough to go a bit further the next day. You already know there'll be a step or two forward then two or more back in these early years. Just hang in there.”

  My chest tightened as he went on. I wasn't angry necessarily with him, but more at the situation itself. It happened every time: things would be going great and then, once Jaimie resisted the treatment or regressed, the therapist didn't know what to do. In fact, they started telling us to do things we'd already been trying as though they didn't know what happened and were giving up. It must have been so hard for Jaimie.

  Jaimie did her best but none of her counselors or therapists—except maybe Donna—ever tried seeing things through her eyes. I only imagined how difficult it must have been for her not to be able to express exactly what she wanted and/or needed in a way others could understand.

  Coupled with that was that those people she couldn't communicate with tried teaching her how to communicate using methods that she didn't feel comfortable using. In fact, even when Jaimie tried expressing herself, she was told it “wasn't the right way.” Then those people tried making Jaimie do things their way—their “right way”—without trying variations of their way to see what worked best. Finally, how she related to those people changed on a daily basis, depending on her own sensitivity levels. If she wasn't able to deal with a person's smell, for example, she wasn't able to concentrate on the task at hand, which caused frustration on both sides.

  How difficult it must be trying to reach a child like that and, my God, how hard it must be on the child. That child was my Jaimie and somehow I had to educate those other people so everyone could understand what she was going through. And it wasn't the everyday people or teachers or neighbors or friends and family that I had trouble making understand Jaimie's needs—it was those people trying to reach her.

  I didn't want to come across as a pushy, over-bearing mom. Jaimie wasn't a child you could just grab and make do things. She didn't learn by punishment or regular forms of hard-handed discipline. You couldn't yell at her or guilt her into doing things. The reason she broke down so much, and so severely, was because she was so smart. She knew how to do things, how to speak, what to say…it just didn't come for her as easily. It made her angry. And if those professionals got frustrated with her, she felt even worse about herself and she'd shut down.

  I saw it time and again. And I wished I could find someone who'd try understanding her more and having patience with her while still allowing her to be who she was underneath it all—a beautiful, smart little girl.

  ~~~

  Since Play Therapy wasn't working for Jaimie any longer, I needed to find other options. I bought book after book, stayed up night after night researching different sorts of therapies (and there are some whoppers out there!) and also reached out to the lovely parents in my SPD support groups.

  I never realized how many different directions we could go in. The focus was usually on helping the child involved cope with their sensory issues while giving the parents tips on how to help the coping process along. Here are a few of the more common approaches suggested to me:

  Home Visits: A therapist, usually an OT or a psychologist, comes into the home to give therapeutic sessions. With some children, who find more clinical environments more stressful, this form of therapy is perfect. It also has the advantage of having techniques learned in the child's natural environment so it may be easier for him to both learn the skills as well as to accept them into their routine. The disadvantage, at least in our case, is that the child isn't always able to separate therapy from his safe place (home) and this can cause him even more anxiety.

  Clinical Therapy Sessions: As opposed to the home visits, the advantage is that the child can go out for their therapy then be able to go back to their safe place to “let down.” Plus it gives the child practice with going out into the “real world” and having to cope with other people in other environments. If the sessions are worked into the child's routine, he or she may be more accepting to it. A disadvantage is that some children may find it hard to generalize what they've learned in the therapeutic session into their home environment.

  Group Therapy: This form of treatment uses the same techniques used in individual therapy sessions but integrated with draw
ing from other people for additional support. For younger children, it is set up almost like a preschool setting. This form of therapy works best with children who have no issues being with or playing with other children. For severe SPD, or children with autism, this form may be too much for them to handle at first. But it's important as it teaches the child how to get along with other people.

  Hospital Preschool Intervention: Here in Edmonton, an excellent program is called “1-2-3 Go!” and is conducted through the Glenrose Rehabilitation Hospital. To qualify for this program, the child must have, “complex needs due to neuromotor, neurodevelopmental and/or neurobehavioral disorders requiring intensive, specialized early intervention service or further diagnostic treatment.” Jaimie qualified for this program but we wanted to try a less intense and clinical setting before having to resort to it. As excellent a program as it is, the focus is on treating the child and the parents aren't allowed to be in the room during sessions. The parent watches from a two-way mirror while their child, along with a handful of other children, is interacting with psychologists, OT, speech therapists, or other professionals.

  For me, this proved so difficult, especially if Jaimie “lost it” and I wasn't allowed to go to her. But, in some more severe cases, it may be the only option.

  Play Therapy: This is one of the most raved about and non-intrusive ways to treat a child's behavioral difficulties. Essentially what happens is that the child engages in non-directive play while their therapist simply observes: how they interact with the toy/object; what they're saying during play; how long they're able to engage in play with the toy/object, etc. All the therapist does is throw in a supportive interjection every so often to let the child know someone is still there.

  The idea is to help the child use the toys as a way to deal with feelings they can't express in any other way. The hope is that once they can draw these feelings out through play, they'll eventually feel they can share their feelings with the therapist or family in a more productive way. Jaimie was enrolled in this form of treatment and it helped us so much.

  Physical Therapy: These therapists help to improve a person's physical ability. For children with SPD, they encourage activities that help to strengthen muscular control and motor coordination so the child can prepare his or her muscles for movement.

  Speech Therapy: This form of therapy helps children learn to strengthen their speech skills. Children are also helped with strengthening their oral-motor control which can help in other areas such as eating.

  Visual and Auditory Training: Being able to see is one thing; being able to determine what one sees is another. A lot of children with SPD have difficulty with fine-motor coordination, hand control and visual discrimination. All of these things are determined by how they see things. That's what visual therapy helps with. Hearing not only helps children communicate better but also incorporated into gross motor skills, balance, posture, and body awareness. Auditory therapy will help children in these areas and it will also help teach them how to discriminate and/or attend to different noises.

  Jaimie, similar to a lot of other children with SPD, has great difficulty with “tuning things out” and being able to focus on a task at hand. Children like these benefit greatly from these therapies as it can help both at home and in school.

  Nutritional Therapy: Conducted by a nutritionist and helps children and their families maintain optimum health through the combination of carbohydrates, fats, protein, vitamins, minerals, and water.

  Sensory Integration Therapy (Sensory Diet): As Carol Stock Kranowitz stated in her book, there are three questions parents should ask themselves while figuring out whether they need to seek a diagnosis of SPD: (1) Does their child's struggles get in their way?; (2) Does their child's struggles get in other people's way?; and (3) Should the parents listen when others, such as teachers, pediatricians, or friends and family, suggest to seek additional help?

  The Sensory Diet isn't another special food diet, although changing nutritional needs would be something considered. It's a combination of tactics and methods, individualized to the child, used to help teach a child with SPD learn how to relate to his or her environment in safer, more effective ways. A great example would be Jaimie's need to spin, run, and jump. Obviously, such things would interfere in a regular classroom but if we give her a safe time and place to do so, she's able to relieve some of her anxiety.

  Carol Stock Kranowitz suggests the following in helping parents create a successful Sensory Diet program specialized to their child's needs. First, set up specific times to perform the activities. Then try to supply the activity the child needs or wants. But, of course, you have to be realistic…Jaimie loves to bounce on the couches but that's neither safe nor something I want the other three children in our house to do. So, we found an inflatable trampoline we set up in the basement for her. Now she can jump no matter what it's like outside!

  Next, children need to be able to direct the sort of play they need/want. If they need stimulation, find safe, sensory-stimulating activities (such as running in a field, lifting heavy things, or jumping on a mini-trampoline. There are even aerobics out there for youngsters.

  Also try changing the routine and environment occasionally. Yes, change is very difficult for these children but they have to expect the unexpected once in a while if he or she expects to get along in the world around them.

  Most importantly, parents need to be in tune with their child's needs and be certain the home is a “sensory nutritious” place for their child. If not, find somewhere to take them. It's okay…really! And in some situations, especially for Jaimie, it is better that they find things outside of the house that provide the therapeutic aspect so they can come home to the safe place for their serenity.

  Some of those we'd tried already to that point; others we chose to wait until she was older. But since our main focus was finding a more holistic natural approach for Jaimie, I also checked into therapeutic approaches not usually discussed—especially not by those in the medical field. Here are a few of them:

  (a) Chiropractic: I would never have thought to use this approach with children but considering that the focus of chiropractics is to address abnormal movement of our nerves, muscles, and joints, it seems a logical choice. It helps with posture and teaches the child to be more aware of their movements in their environments.

  (b) Craniosacral Therapy (CST): This is something I'd never heard of until I joined a SPD parent support group. Basically someone assesses how well the child's craniosacral system works. That's a confusing word that just means they check to see the effectiveness of the membranes and fluid that helps to protect the brain and spine. All that's done is light touch massage on the bones and structures of the skull. It's supposed to help correct the adverse results (such as sensory, motor, and neurological dysfunction) stemming from imbalances during the development of the brain and spinal cord. Carol Stock Kranowitz recommends checking out Dr. John Upledger‘s website at www.upledger.com for more information. The few parents I'd spoken with on this therapy seemed pleased with the results.

  (c) Hippotherapy: This is another form of therapy I learned about through my SPD parent support group. It's supposed to help posture, movement, and sensory processing. Essentially, OTs and physical and speech therapists integrate movements of horses into regular therapy interventions. One mother in my group said it did wonders for her son's muscle tone, reaction to stimulation, and sensory-motor skills. Who knew?

  (d) Perceptual Motor Therapy: Donna used a form of this with Jaimie to help her with fine motor and visual discrimination. The idea is to get the child to participate in activities stimulating left/right brain integration so he, or she, learns to be more in tune with what's happening to the nervous system when they do things.

  The last forms of therapy mentioned may sound a little out there, but like other parents of SPD children, I'm even willing to delve into the little or unknown to help Jaimie learn to live her life without pain or fear.

  It's a
ll for the greater good.

  ~~~

  Just before the summer in 2006, close to when Jaimie's therapy ended for the summer, I registered Jaimie in a pre-preschool class called, “My First Preschool,” at our local YMCA. It was perfect for Jaimie.

  It was only an hour long with fifteen minutes of free play at the beginning, then a craft, followed by story time, and some singing and dancing to wrap up the hour. Those were all her favorite activities that we did at home so I thought she'd have a blast! Plus the class size was small (about 10 other children), Jordhan was allowed to join her, and I could stay with her too. But Jaimie just wasn't ready.

  She was confused about what to do in the free play. She needed structure and routine; so when we walked into the classroom, and she didn't know where to go or how to start, she broke down right away. She loved the rest of the class, so I knew if I could get her past the first 15 minutes, we'd be okay. Then her teacher made a fatal error one day by grabbing Jaimie by her arms and saying, (too sternly, in my opinion), “Jaimie, you must wash your hands like everyone else. Get over there.”

  I knew we had to teach Jaimie that, eventually, she'd need to follow the rules of the teacher at hand. Not all teachers would allow her just to use her anti-septic foam and wipes because she hated the feeling of the water and/or soap on her hands. And they wouldn't understand her aversion to such things either, no matter how much I tried explaining it to them. I also empathized with how irritating it must have been to have a child who wasn't willing to go along with the others and you didn't understand why. But, geez, ask me!

  I found the teacher's reaction disturbing, actually. I gave her information about SPD and a sheet of Jaimie's history, including a brief description of her triggers. I even emphasized that the teacher, and any of her helpers, should consider touch as a last resort. And not once did I intervene when the teacher tried guiding, teaching, or helping Jaimie. I couldn't believe it. Because of that one outburst, Jaimie refused to go into any more classes with that teacher and I had to pull the girls out. Boy, did I ever get flack for that decision!