Jaimie was intelligent, talented, creative, and blessed with such a big heart. She simply had to learn how to live in the same environment as the rest of us did—just in her own way.
As she learned more effective coping tools, the rest of us learned too. We learned new definitions of patience, understanding, love, and that there are many ways to look at and handle the same situation. We were also reminded that SPD wasn't entirely who Jaimie was. SPD was only a part of her and that was something that we tried to make others understand too.
Jaimie still has a severe aversion to touch but last year I received the best gift from Jaimie I'd ever, or had ever, received: I crouched down one evening so she could touch my leg with her head but she wrapped her tiny arms around my neck and hugged me—a real hug. I was in such shock it took me a few seconds to hug her back. Not only that but as I wrapped my arms around her tiny body, she whispered: “I love you, Mama.”
For the first time since she was born, I'd experienced the joy that other Mommies did when their children expressed love. I knew her hugs would be rare and far between but I took it as a sign of good things to come.
Maybe, one day I can get a piano so Jaimie and I can sit and play it together, the same way I did with my mother. The ability to love, to calm, and to touch through music is the one thing Mom gave me to pass on.
And for that, I am so grateful.
8
The Long and Winding Road of Therapy
Of course, Donna didn't leave us empty handed. Her detailed report helped us rip through some red tape and she'd also arranged for us to meet with the head psychiatrist of her organization.
“I'd really like for you to meet with Dr. MacKenzie-Keating,” said Donna over the phone after we'd ended the sessions. “She's a strong connection to the preschool programs at the Glenrose. She'd be doing this as a personal favor to me, Chynna, so you guys have to make sure to come.”
The Glenrose was a rehabilitation hospital in Edmonton. I'd heard of their preschool programs, which came highly recommended. I didn't feel right about putting Jaimie in such programs for a few reasons. First, they required Jaimie to go into a therapeutic setting three or four days a week, three hours each day. There'd have been several different kinds of therapists working with her and, finally, I wouldn't be allowed to go in with her.
Jaimie was barely able to stand an hour with Donna once a week and I had to be there. How was I supposed to feel good about sticking her in one of those programs at the Glenrose? I envisioned standing on the other side of a two-way mirror as someone tried interacting with Jaimie and I wasn't there to comfort her. I just couldn't do it. The whole thing just seemed so…sterile to me.
I'd heard wonderful success stories from other parents about those programs but I knew in my heart Jaimie needed something that moved slower, seemed warmer, and with people like Donna, with whom Jaimie felt genuineness.
Obviously, I couldn't refuse the option outright. We needed to do whatever was necessary and available to us to help Jaimie, even if it ripped my heart out. But I chose to use the Glenrose as a last resort option: if nothing else we tried worked, we'd have done it. Steve and I decided, in the end, to go to the meeting Donna had set up because we needed the recommendation from the psychiatrist to even have that option. I was nervous about everything we had to do.
The meeting with Dr. MacKenzie-Keating was done around a mild Triage Assessment in which she was participating. A Triage Assessment is when a group of professionals, such as psychiatrists, psychologists, occupational therapists, speech therapists, etc., come together to meet with and assess the needs of, a child. It's usually done with the parents or caregivers present and in a child-friendly environment. There were about four other sets of parents besides us with their children, a speech therapist, a physical therapist, and another occupational therapist aside from Donna.
The room was filled with activities aimed specifically for children with sensory challenges. The only reason I picked up on that was because many of the activities were things Donna had suggested or tried with Jaimie: finger-painting, sandboxes, mini-trampoline, air mattresses, weighted vests, yoga balls, even a coloring station with stickers. Jaimie ran around trying everything while Donna kept her company.
Each expert there looked at Jaimie through different eyes, searching for different things. So we knew each of their diagnoses and recommendations for treatments would also differ significantly from one another:
Psychiatrists: Usually the head of the diagnostic team, they specialize in the prevention, diagnosis, and treatment of mental illness. Their focus is what's wrong with your child and they're usually the ones to give the label (such as ADD, SID, etc.). Because they have a medical degree, they are also able to determine physical problems that can stem from the child's disorder. It also means they can prescribe, or suggest prescribing, any sort of medication which they think may help during treatment and therapy.
Psychologists: a psychologist was the person I figured we'd have seen most often as they specialize in research, counseling, and generally helping people cope with everyday problems. They'd help find the appropriate coping skills to help us and Jaimie live with SPD more effectively. They may even help us work on things like calming techniques and discipline. I thought that person would be the most insightful for us, in some ways, because the non-medicinal tools we'd learn from him or her would be more effective in the long run. This person would help us focus on the things around us, natural things, to help Jaimie.
Social Workers: These people have counseling training and connections to government programs. Maybe this person could direct us to government assistance, if required, and other community programs we qualified for.
Occupational Therapist (OT): From what I read, different OTs specialized in different areas. For example, Donna's areas of specialty were children with sensory sensitivities, including eating, toileting issues, and relating to the environment. But they can also help with speech, communication, and behavioral management. Their training is working on a close, one-to-one basis with a child. They're also, as we found out with Donna, the connection among the other players on the team. They'd help Jaimie slowly and gently learn coping mechanisms by exposing her to different types of sensory information and teaching her how to deal with that stimulation.
Vision and speech therapists, physical therapists, and nutritionists—all mentioned in an earlier chapter—were also available but never approached us. We figured that Jaimie most likely didn't need them. Jaimie's speech wasn't great but she at least tried communicating with us and physical therapists usually work with children who needed muscle tone strengthening, which Jaimie didn't need either. We kept an open mind for any and all options, just in case.
Each available therapist came up to us individually to talk about Jaimie. But it became obvious that she had no speech or physical problems so there wasn't much to discuss. As we waited for Dr. MacKenzie-Keating to come over to us, Steve and I watched Jaimie, trying out all the activities.
“Wow.” Steve said. “This is a perfect playground for her.”
I nodded, watching her bounce on the mini-trampoline. “I know. It's amazing. I wish our basement was bigger!”
Jaimie ran around trying everything but not sticking with one activity for too long. Donna finally got her settled down at the coloring station and gave her a huge pile of stickers. Jaimie was in heaven. Jordhan planted herself at the sandbox/water table. After about half-an hour, Dr. MacKenzie-Keating finally came over and introduced herself to us.
She sat on the extra toddler chair in front of us. After polite introductions and handshakes, she said, “I've read Jaimie's file and Donna has told me a lot about her.” She said, looking over at Jaimie and Donna. “It's good that Donna could be here for her today.”
I smiled. “Yeah. Donna is a familiar face. Jaimie liked her a lot.”
“But you ended the sessions with Donna, correct?” Dr. Keating said, leaning in closer to me. “Donna mentioned Jaimie had treme
ndous difficulty with coming down and preparing for the sessions.”
We discussed the steps Donna took before coming over and how terrible Jaimie's fits were during the week after her visits.
“Jaimie's reactions got too severe.” I said. “We were devastated because we hoped this would've helped—and it did for awhile—but something about the sessions or Donna upset Jaimie too much and she took it out on the rest of us.”
Dr. Keating then asked us a few questions about our family history with mental illness, or if anyone else in either of our families was autistic, or had sensory issues. We covered my pregnancy and Jaimie's birth. Then we briefly talked about what sorts of coping methods we'd used.
With every question we answered, I felt more and more like we were under a microscope. Many of the questions Dr. Keating asked us, Donna had already asked but the ones about our family histories, the type of relationship each of us shared with Jaimie, as well as what coping methods each of us used with her, were new and intimidating.
She must have sensed my discomfort. She touched my knee and said, “I'm just trying to get a feel for what you guys are going through so we know what direction to send you in.”
I was taking my psychology degree. I knew how the counseling routine went. She asked questions, we answered them, and then she repeated what we said with a tag on like, “Is that right?” I felt like saying, “Look, Dr., cut the crap and let's get to it. We know what we go through in our house. We know what Jaimie has and we've researched it fully. You've got a file on her an inch thick on your lap full of reports, assessment results, and diagnostic reports. Enough is enough. Tell us what to do for her!”
Instead, I clutched my hands together and took a deep breath. I answered her seemingly endless questions as completely as I could; told her the methods we'd tried and were trying, what worked and what didn't. Poor Steve just sat there, barely saying a word. I hoped at the very least we'd be able to help him learn how he could be a daddy to his daughter. I so wanted that for him.
Dr. Keating highly recommended the Glenrose programs—of course, since she headed a couple of them!—and told us trying to get Jaimie into some sort of playgroup with other children her age would be a great thing for her.
“Donna was right when she said you need to get her out more, even if she struggles.” the doctor said. “Jaimie is a bright girl who seems interested in her surroundings but struggles to interact with it because of her sensory issues. We need to get her out there practicing the skills Donna and you two have been teaching her or she'll never be comfortable. Donna will call you with a few playgroups you can try or see what you can find on your own. I highly recommend ones involving movement, music and crafting as those are her areas of strength.”
Finally, she made a recommendation to get Jaimie into a local community program called CASA (Child and Adolescent Services Association) for long-term assistance. Essentially, CASA provided the same sort of support and assistance we'd been receiving all along with the same sorts of professionals (psychiatrists, psychologists etc.) The difference was that CASA provided assistance to children, youth, and families until they were 18. That was what we were looking for.
The program Jaimie was in at the time, the one Donna was a part of, ended when Jaimie turned three and that wasn't too far away from the meeting with Dr. Keating. If we hadn't found a path to follow soon after then, we'd have been stuck on our own.
In the end, I promised to look into playgroups for Jaimie and we consented to have Jaimie put on a waiting list with the Glenrose as well as to have the recommendation put through to CASA. I found the entire process rather intimidating. It was almost as though they made all the decisions for us and we were just going along for the ride, giving our consent when necessary. I didn't like it.
I wasn't a control-freak—I knew when it was best to let others handle something. But I also knew Jaimie better than anyone and nobody seemed to recognize that the times Jaimie responded the best to treatment or therapy was when it worked within her comfort zones instead of forcing her to do what others thought was best.
Plus, from what I'd heard from other parents, as well as my own research, what really worried me about CASA, and the Glenrose programs, was that they were very supportive of medicinal therapies. That was something both Steve and I were against for a child as young as Jaimie was at the time. But we didn't say anything.
All we did at that point was wait for phone calls from either place when Jaimie's name came up on the arm's length waiting list. Until then, all we could do was conduct more research on our own, be strong about the sort of treatment we wanted for our daughter, and pray.
~~~
Jaimie's third birthday came and went. We still didn't have her in any sort of therapy nor did I find a suitable playgroup for her. But we weren't left completely on our own because we were still connected to the EEIP and their resources. Maria came for follow-up visits every few weeks to see how we were doing. Just before the time Jaimie had to be released from the program, Maria set up a meeting for me with the head coordinator of the EEIP, Joan MacDonald.
“I think you may find a meeting with Joan very useful,” Maria said. “She has a teenage daughter with SPD. Perhaps she can give you some insight, encouragement, or support that I can't give you on this subject.”
I knew why the idea for the meeting came about. I'd been procrastinating on getting Jaimie into a play program. A lot of the places, which Donna suggested, were for children with developmental delays. And even though Jaimie had a diagnosis of SPD, she had no speech delays, no physical impairments, no hearing problems, or other such disabilities. Her only struggle was her severe sensory issues and the anxiety that stemmed from those issues. Her seemingly normal functioning in the other developmental areas disqualified her from certain play programs. But when I'd tried out—and I don't like using this word—“normal” play programs, Jaimie wasn't able to participate with the “normal” children and I'd end up pulling her out. It was as if we were stuck in the middle between what was considered “disabled” and what was considered “functioning well.”
I needed insight from an expert—a person who'd been where I was. So, I agreed to meet with Joan, who came to my home with Maria the following week. Joan was like a breath of fresh air. Finally I had a person who sat with me and said, “I know what you mean.” and truly knew.
In the past, I'd found a few online support groups but Steve and I never knew anyone near us with a child like Jaimie or who understood what it was like. Therefore, I welcomed Joan with open arms.
Joan's daughter also had SPD and Joan went through hell on earth to get her daughter the proper treatment—just like our story. Like Jaimie, her daughter was able to function well on most other levels but her sensory issues prevented her from joining activities or participating socially the way she wanted to. As well, her daughter went through a lot of the same assessments Jaimie was going to have to and she did it at a much older age (Joan's daughter was in her early teens during most of her assessments.)
As Jaimie jumped around from one couch to the other, speaking rapidly, Joan smiled. “Wow, I cannot believe how much she's like my daughter was at this age. It's amazing.”
We talked about Jaimie's file, her progress, and our mutual respect for Donna.
“Donna is an amazing person and a fantastic occupational therapist,” Joan said. “I'm glad she was able to give you some direction. I'm just sorry she wasn't able to reach Jaimie the way she wanted to. I know she wished she could have done more.”
“She did a lot,” I said. “Even now.”
The main reason for Joan's visit was to help arm me with information for our Triage Assessment with CASA. I had no idea what was involved and was scared. Well, we had insight about what happened from the psychologist‘s view but I wanted to know what it was like from a person who'd gone through it—especially what it was like for the child.
“Well,” Joan started. “My daughter was a lot older than Jaimie when she went in fo
r an assessment. So, the experts interacted with her directly while I sat with her. For Jaimie, you'd most likely go into a room filled with toys and activities so Jaimie and Jordhan can play while you're free to talk with the psychologist. They'll probably have an OT there to help out with the girls too, if needed.”
She said there'd be a two-way mirror where another group of experts would observe the interview. Usually this group included another psychologist, psychiatrist, speech and/or physical therapist, physician and others, depending on the needs of the child. For Jaimie, there was to be the head psychiatrist, another OT and some sort of child behavioral expert. On top of all of that, the session would be taped for later review, evaluation and diagnosis.
“One thing you should also know about CASA is that they are strong supporters of medicinal treatment.” Joan added. “In fact, it's usually one of the first things they recommend in the more difficult cases. It may be recommended for Jaimie because of her severe reactions to things, her anxiety, and her inability to calm herself. But never be afraid to say what you do and don't want. Don't be bullied into anything.”
Steve and I already knew drug therapy would be presented as an option. It wasn't to say we'd never consider drugs if Jaimie needed them later on down the road. But we felt there had to be better options out there—more holistic options—for a three-year old child. And we stuck with that decision.
The visit with Joan proved comforting as well as insightful. Not only were we given advice and tips for handling the assessments, I was also given a glimpse into Jaimie's future through Joan's daughter. At the time we met, her daughter was 15 years old. She was taking anti-anxiety medication but she functioned well as long as she was given enough preparation for new situations or upcoming events and also given appropriate calm-down time after such events. She did great in school and had several friends. She even participated in a few social activities.
Not Just Spirited Page 8
