Not Just Spirited

by Chynna T. Laird

  School is very different from home. School is unpredictable where life at home is safe. The child will seem different in each of these environments because what's in those environments differs. But school can become a safer place when teachers and parents work together to focus on tactics and methods that work.

  There were days—and still are—where Jaimie was unable to handle the extreme sensory stimulation at school. And we had a few incidents where I had to go to the school and bring her back home because Mrs. P. wasn't able to bring her back down. But we always tried working with her at school first. When she didn't get enough sleep, or was stressed out even before leaving the house, the day ahead of her was still a challenge—for all of us.

  To this day, she shies away from playing with other children, and still depends on me for a lot of things, but she's trying her best. We're all working as a team—parents, family, friends, teachers, and community assistance—to help give Jaimie the support she needs. And we've had small hints that our efforts are making a difference.

  When I picked Jaimie up from school the other morning, she wasn't at the doorway itching to leave. When I peeked in the door, I saw her standing beside a little girl who was seated at the writing table. Just as I was about to call her over to leave, Jaimie bent down to the little girl, allowing her to touch her hat, coat, and ski pants. I watched in awe as Jaimie then allowed the little girl to touch her face and hands.

  “Good bye, Jaimie,” the little girl said. “I really like your hat and other winter stuff!”

  “Bye-bye, Rita,” Jaimie answered with a huge smile we rarely see. “I'll bring my Care Bear tomorrow.”

  Mrs. A., the Aide, approached me to explain the miraculous scene. “Jaimie and Rita have developed quite a strong bond. Rita is blind and since her first day, she and Jaimie seemed drawn to one another. Rita ‘sees’ by touch so we were worried at first how Jaimie would react. We always ask Jaimie whether it's okay with her to be touched. You should see… Rita puts her hands all over Jaimie's arms, face, hands, hair, and clothes—just like a few minutes ago—and Jaimie never minds. It has Kathy and me crying each time.”

  Jaimie teaches Rita different ways to ‘see’ things, and Rita teaches Jaimie that touch isn't always terrifying. Kids amaze me. God has certainly brought certain people in our lives for specific reasons…sometimes just in the nick of time.

  We finally have all of the support we'll need to make sure she'll continue making her mark in this world. From now on, Jaimie's voice will be heard and I'll do everything in my power to make it be heard.

  Jaimie will always have SPD but she learned—and continues to learn—how to cope with it. She showed us all that even with a broken wing, any of us can still fly if other people just take the time to listen and try to understand without judging.

  All your life, you were only waiting for this moment to be free.

  12

  Blackbird Fly: Endnotes for Parents

  When I was growing up, “Blackbird” (1968) by The Beatles was one of my mother's favorite songs. John Lennon always said people could take what they needed to from his lyrics and, for the people in my life. The words in that particular song have always been a source of comfort. When I became a Mom, it was the song I sang to Jaimie to help calm her down enough to focus on my words. To me, I always felt as if John was trying to say that we all have things about us that are different and once we accept those differences, we can help make other people accept them as well.

  One thing I've learned through all of our struggles with Jaimie was that we reach a level of understanding by being willing to put aside what we see or what we think we know. If Jaimie was taking lessons on how to interact with other people, then I had to help other people learn how to interact with her too. Otherwise there was no point in giving Jaimie her coping tools.

  There were just a few important things I thought parents should know. First, Jaimie's form of SPD is quite severe. I certainly don't want to generalize our case to all cases of SPD. Some children only deal with certain sensory struggles, some are only dealing with gross and/or fine motor skills and others, like Jaimie, struggle in all areas. The best thing to do is to watch, look and listen: Watch how a child interacts with his or her environment and the people in it; Look what they are trying to tell you and how they are trying to communicate; and Listen both to your child and to your gut.

  Donna Gravelle, the wonderful OT who first worked with Jaimie, told me to trust my gut and that, in her experience, when parents feel in their gut—their very soul—that there's a problem, there usually is. That's not to say there aren't children out there who are “just spirited” or whose emotions are right at the surface all of the time. But there's a very fine line between a child who is spirited and one who has more serious issues.

  A child who is spirited may run around at full kilt, is very active, and doesn't like to settle down. He or she may even be choosy about certain activities or events. But these things may not prevent them from living their lives and enjoying being a kid. Alternatively, a child whose choosiness or “spirited nature” affects his or her everyday life, how he or she interacts with the environment or the people in it, or impedes their enjoyment of life, may have a more serious issue that requires closer attention.

  The other point I wanted to help parents with is trying not to fear therapy. Allow me to explain. I won't lie—I was incredibly nervous about putting Jaimie into therapy. She wasn't able to function with us at the best of times; then, suddenly, different people showed up at our home—or we took her out to people—wanting to work closely with her, getting her trying the very things that terrified her. I hated seeing her screaming, struggling, and fighting with those people, and it took every ounce of strength not to run to her and intervene. But, as I realized later on, these activities were exactly what Jaimie needed.

  All of Jaimie's life, up to the point when Donna entered our lives, we helped her avoid any activities, people, places or other things that caused her distress. I didn't realize that I added to the problem. If Jaimie wasn't allowed to experience any of the sensory things around her, how was she ever going to learn how to function in her world? I wouldn't have been able to live with myself knowing that I contributed to her distress rather than helped her with it.

  Bearing that in mind helped me get through watching as she screamed, cried, and fought as people tried tuning her into the world around her. And what also helped me grin and bear it was conducting research on the various therapies and the people who'd worked with her, the tactics they'd most likely have tried, and why they needed to do it. It eased my mind to understand.

  Just as Donna explained to us during her first few visits (as I stood in the background, biting my nails and holding back tears), “Jaimie's brain doesn't understand how to process these stimulations. So we need to jolt her brain to the stimulation but do it in fun ways so she'll learn to relate the stimulation to fun instead of fear.”

  Steve and I wrote our feelings down and read them over every time we felt like pulling Jaimie out of therapy due to her reactions. We called it, “Our Oath to Jaimie's Advocacy.” It was our way of reminding ourselves, “Yes, we are doing the right thing… we hope…”

  Keeping these things in mind calmed our nerves during Jaimie's first assessment and kept us focused through the rest of our therapy journey:

  Take what you find helpful and put rest aside: This doesn't mean forget about what you're told—just to put it away in case you need it later. Parents get a lot of information, advice, and suggestions about what they should do. It can be intimidating and, at times, parents may feel pressured to do what they're told is best. After all, these are the experts, right? Yes and no.

  Yes, they are the experts in their fields but parents are the experts with their child and only they know what's best. Parents should never feel bullied or pressured to do anything they don't think will be good for their child nor will help them. And, as we found out, parents should always be sure to voice their opinions
and what they want for their child.

  For example, there were two things Steve and I wouldn't back down on with Jaimie: (a) we wanted to find an effective non-medicinal way to help her learn to cope with her SID; and (b) the therapist would do best with Jaimie by working within her routine and gradually expanding on it. As soon as Jaimie feels uncomfortable or scared, she introverts and we can't get her back out. This means starting back at square one (something we, and the first OT who worked with Jaimie, figured out the hard way.)

  Parents need to filter through all of that information to find what they think will work best, do the research, and then get everyone on the same page. In the end, that's what everyone involved wants: what's best for the child. And the final stamp on what's best is up to the parent.

  Ask a lot of questions: Parents should never be afraid to ask questions whether about what's involved with a specific treatment, something they've researched and want more information on, or even more information about the expert's credentials. A parent probably needs to deal with those experts for a long time so they may as well get any uncertainties out in the open. A true professional won't mind any questions and respect the desire to be as informed as possible.

  Consult with someone who's been there: When Jaimie was finally next on the infamous waiting list for the program we wanted to get her into, I met with the Head of the Edmonton Early Intervention program, Joan MacDonald. She was an invaluable source for me because she had a teenage daughter with SPD. As soon as she met Jaimie, she said her daughter was exactly like her as a toddler.

  Talking with someone who's been there serves several purposes. First, parents get the heads up about what the assessments will be like. It helps ease the mind a bit to have some insight ahead of time. Second, and what I found most helpful, is that a person who's been there can show how things can get better and give a look into what the future holds. Finally, it just feels good to talk with someone who's been there, and continues to be. It's wonderful to have supportive friends and family around offering words of encouragement and love, bless their hearts. But, truly, the only people who understand the frustration, the heartache, the worry are other parents of a child with SPD.

  The most important thing to keep in mind, which I have a tendency to forget myself sometimes, is that all of the experts are there to help us parent Jaimie most effectively and help her learn the skills she needs to enjoy her childhood to the fullest.

  Be strong, be patient, and never be afraid to address questions or concerns.

  ~~~

  Penny Lee Kelly wrote a phenomenal synopsis regarding her daughter, Katie. She too wanted to bring understanding for her daughter and awareness for SPD. It was her powerful words that inspired me to write about Jaimie:

  “There has been so much advice given in all the books I have read on SI Dysfunction. I think the most important advice was the following insights: to pay attention to your child (remember that your child's problem is a physical one and the indigestion of the brain causes her behavior – she can't help acting the way she is acting); know your child's strengths and weaknesses (get as much information as you can); anticipate responses (develop strategies to cope with negative emotions before they occur); empathize (understand the child's feelings and reflect them back); provide structure (establish routines and schedules); be consistent with discipline; and become your child's advocate.

  I think that last piece of advice is why I wrote this synopsis for Katie. I need to educate adults who need to know about Katie's abilities. SI Dysfunction is invisible and people tend to forget or disbelieve that a significant problem affects my child. My job as her parent is to inform you so you can help my child learn and develop to her fullest potential.”

  I want people to look at Jaimie and see a smiling, beautiful little girl. I want to bring about understanding to her and children like her. There are many folks out there who don't even believe SPD is an actual disorder. They erroneously believe all these children need is, perhaps, a stronger hand of discipline.

  Like Penny Lee, Steve and I struggled for several years before Jaimie's diagnosis for empathy and understanding. Even now, if Jaimie isn't able to hold it together well, we'll have people suggest, “Give her a good spanking. That's all she needs!” or “It's just a behavioral problem.” We don't get angry or defensive anymore because, honestly, people simply don't understand that Jaimie struggles every single day with things we can't even see.

  People don't understand that it may have been their perfume, breath, or house smells on their clothes that set Jaimie off. They don't understand that standing too close to her or touching her in any way drives her crazy. And they don't get that on top of those smells or the fear of being touched or the way their faces move when they talk or that one flickering light of in the distance, she's scared to lose it because then…then people will know something is wrong with her and she'll feel even worse.

  Jaimie is a very intelligent girl. In fact, she's developmentally ahead of most kids her age. She's creative, funny, loving, and warm. But her body won't let her feel safe enough to let too many people see those beautiful traits in her. For Jaimie, it's better to avoid the activities or people that make her insides go crazy—even when she sees such things are fun for others—than to risk being over-stimulated and not be able to calm herself down. It's terrifying for her and it's what she'd been trying to tell us all those years before she could talk.

  What I want most in the world for these children is understanding. It starts with parents and guardians. We need to create a strong support group, get our child's physicians on our side in order to access the community assistance and to arm ourselves with as much knowledge as we can. Knowledge is very powerful and it's also contagious. Maybe if we all tell our stories, if we all reach out together, it'll happen.

  On my most frustrating days, I simply look down on Jaimie's earnest little face and think, “My God. How strong and courageous she is just to get out of bed in the morning and face what her environment has in store for her. If she can do it, so can I!”

  Jaimie is six now. It was difficult for her to concentrate on her learning at first. And we had several days where her teachers and Aide weren't able to calm her, resulting in me having to come get her. But despite all of that, Mrs. P, the Aid and I worked together helping Jaimie face every challenge with the proper tools:

  We were sure never to make her feel singled out for anything. When we had to incorporate one of Jaimie's sensory tools into her school plan, such as her squeezable ball to help with paying attention and/or working through an anxious situation, it was made to be no big deal and just one of her learning supplies.

  The IKEA egg she was supplied with was utilized by all of her classmates whenever any of them needed a “calm time.” Mrs. P. made sure to explain that the egg was a “calming chair” not a “time-out chair,” which was kept in an entirely different part of the classroom. That way Jaimie never associated it with being bad.

  Mrs. P. had a few other children who'd had writing difficulties so she bought a big supply of pencil grippers of different colors and designs. This made Jaimie so happy since she had some fine motor skill struggles too.

  Jaimie's Aide came up with a wonderful book she made for Jaimie called, “Jaimie's Book” where Jaimie got to work through potentially stressful situations by writing and reading. The word “plan” worked really well with Jaimie. It seemed to calm her because she actually had to brainstorm about solutions to her problems. Then she and her Aide wrote a story about how Jaimie was faced with _____ (whatever the problem was) but Jaimie would be okay because she could _______ (the solutions Jaimie came up with.) It was brilliant and we do that here at home now too.

  Worked with Jaimie all year long on how to use her words instead of acting out or shutting down. Jaimie will still need help with this but the seed was planted.

  Allowed Jaimie to watch other kids doing activities that were uncomfortable before her so she could decide if she wanted to give it a try or, if
she wasn't able to handle the activity on that day, got her to come up with another way she could participate. For example, if they worked with wet clay, which Jaimie wasn't always able to handle, she chose to do the craft wearing gloves and they made sure to have a bucket of water and a cloth right beside the work table so that she could wash her hands.

  Near the end of the year, we had Jaimie attend school all day in order to prepare her for the Grade One setting. We were also able to meet with the teacher, which really helped Jaimie.

  These were just a few of the wonderful things they did. They also listened to me when I requested that Jaimie have more physical activity during her day because it calmed her and she didn't seem as klutzy later on. Mrs. P. took them outside when it was nice; let them run around and play in the gym when it was rainy or too cold; and gave Jaimie “special jobs” to do—like taking things to the principal or walking with her blind friend, Rita. The most important thing to help our SPD children in public school is to communicate with the teachers and other educators on a daily basis. They can't help our children in school if we don't share what will help from our perspective and we can't help our children at home if we don't know what bumps they encountered during their school day.

  Finally, Jaimie's sensitivity to certain textures is still rather high but she's at least becoming braver in trying certain foods. We now have a “one bite rule” in the house for everyone. We also have two options in line for when Jaimie's eating more of a variety of foods:

  We discovered the Feingold Program (www.feingold.org), which isn't a diet but what they call an “elimination and replacement” process. Basically we take everything out of our diets that have artificial flavors, coloring, or dyes. It's an awesome program because you aren't really giving up anything; you're simply making better choices. And with all of the research showing how additives in our foods affect even the healthiest individuals, we love the philosophy behind this program.