It was tremendously encouraging and I needed to hear all of that. I needed to see that everything we'd been going through was worth it. I needed to know that the assessments, the examinations, and the meetings would amount to something some day. I needed to hear that the coping tools and mechanisms we were learning would be helpful to Jaimie down the road. And, most of all, I wanted proof that all the crap we'd gone through was helping, even though we couldn't see it then.
Before leaving, Joan said, “Don't give up, Chynna. You've come so far and done so much. Things will be okay.” And she hugged me.
After that meeting, my strength recharged. The determination I'd had in the beginning when trying to get people to listen to us returned. And the best way I thought I could help Jaimie while waiting for phone calls was through “field research.”
In order to understand my daughter's world, and how the therapy was supposed to help her, I needed to live in her world her way. I needed to feel how things felt to her, smell how things smelled to her and see things through her eyes. So, shortly before starting at CASA, I did some “field research.” I wore the itchiest wool sweaters or other irritating fabrics right on my skin and tried concentrating on tasks at hand; I wore my shoes on the wrong feet and tried carrying on regular physical activities; I shined a bright lamp in my face while trying to do homework or writing; I spent a couple of days doing everything with my left hand instead of my right; I put on my winter clothes in the middle of the summer then tried doing my daily routine; I drank water with loads of salt in it or ate extremely spicy foods or eating next to kitchen window after they'd mowed the lawn or before the garbage truck emptied the garbage bin out in the parking lot (WOW! That was awful!).
These may have seemed like extreme things to do—and some of them were—but until I did those things I had no sense of what or how Jaimie felt. After I did my field research, I had much more patience with her reactions to things, people, and situations and was able to spot triggers before they had a chance to affect her adversely. That didn't mean I could change everything but I was at least able to warn her that such-and-such was going to happen which would feel/smell/look like this-or-that and we could do something to help her through it. It made me feel closer to Jaimie and it bonded us in a way we hadn't been able to if I hadn't done those things.
With my mental notes from my own personal research, and Joan's wisdom, I was ready for whatever came next. It gave me hope and I was more determined than ever to get Jaimie what she needed to live her life.
~~~
The next several months, while waiting for CASA to call us, proved to be the most stressful. Jaimie wasn't receiving any sort of therapy and she struggled more than ever. She needed to have the bars put back on her bed; her night frights intensified; she refused to leave the house; and her eating and toileting difficulties worsened. What made matters worse was that Steve and I were so frustrated with what was going on around us, we started taking it out on each other.
He called me during his lunch hour asking whether I'd called one place or heard back from another. “No, I haven't,” I said icily. “And, like I told you yesterday—and the last time you asked—there's nothing I can do. We're on a list. I can't exactly get us bumped up on the list. We just have to wait.”
“I just need to know we're on the track to something,” he said. “I feel helpless enough not being able to physically help her. The least I can do is help get the show on the go. I have to see something's getting done, or will be getting done. It's ridiculous.”
I understood, of course. There's nothing worse than being told you're “on the waiting list” with nothing more you can do than to wait. It is frustrating. But what was I supposed to do? Rush in the place like Rambo demanding to be heard? We needed to be patient, which was really hard for me.
We finally received our phone call that Jaimie was next on the list and our appointment was set up with instructions for our Triage Assessment. We were more than prepared.
For Jaimie, all we could do was tell her we were going to another school to play. For us, we read our instruction sheets, all of the material provided to us by EEIP and my journals I'd kept over the years. We were armed and as ready as we could be. Of course, no amount of preparation sets you up for the actual day.
On our Triage day, we waited for someone to collect us from the waiting room. Jaimie and Jordhan played with a few toys and Steve and I sat in hard metal chairs holding hands. Then a man came around the glass wall and introduced himself. “Steve and Chynna? I'm Brian. I'm the psychologist who'll be heading our interview.”
We all shook hands, said our pleasantries, talked about the lovely spring weather, and then sauntered down to the interview rooms. Jaimie wouldn't let me hold her hand but she clutched her beanie Tigger so hard her knuckles turned white. I ran my fingers down the length of her hair and she tilted her head into my palm.
At the end of the hallway, a small group of people were there, waiting for us. We were introduced to the head psychiatrist of CASA's preschool programs, a couple of OTs, a speech therapist, and a couple of psychology students. More handshakes, more pleasantries, and then the psychiatrist explained what would happen.
“Steve and Chynna, you will be going into this room of fun over here with your beautiful daughters and Brian,” she said. “The rest of us will be in this room here. We will be observing all you through a two-way mirror and the session will be recorded. Try to relax and take your time. We aren't here to judge. My only focus is Jaimie. I will be watching how she interacts with everyone and everything around her. Karen here will join you to assist with the girls, if necessary. At the end, I will join you to discuss our observations and what we'll be doing from here. Any questions before we begin?”
We both shook our heads. Jaimie refused to go into the room at first. But once she saw all the toys and books, she tiptoed through the doorway, gripping Tigger's neck in her fist.
“Wow,” said Brian. “Someone sure has a tight grip on Tigger!”
I smiled. “He's her best friend and confidante.”
Jaimie hid her face with Tigger and followed Jordhan to the toy shelf. The rest of us sat in the chairs on the opposite side of the room. Brian whipped out a pad of paper and our file.
“Okay,” he said. “Now I know you've answered many of these questions—probably a few times—but we need to start from the beginning in order to have everything in our file too. Please bear with me.”
He started with our family histories: our childhoods, our relationships with our parents and siblings (past and present), health histories, mental health histories, and our feelings toward our families. I fought tears the entire time. To be fair, though, I was more emotional than usual for two reasons: My mother had passed away the day before our meeting and I'd just found out that we were going to have another baby.
My mother and I weren't very close but her death still hurt. And I knew they'd be asking us questions about our family histories. I knew their interest in our families only had to do with any patterns of Jaimie's disorder or if our family had any interactions with her, which they didn't since they were all in other provinces. Steve and I had nothing to hide. But it was still rather difficult answering certain questions and it wasn't easy being the receivers of a question firing squad. It was much more intense than the question session with Dr. Keating.
Steve didn't, and never did have, a close relationship with his father and when asked about him he said, “We had no emotional relationship at all and we don't communicate now. I know the way he handled problems and feelings has a lot to do with how I'm dealing with things. We just weren't supposed to talk about stuff like that, you know. Guys just don't.”
But Steve was very close to his mother and I to my Uncle Craig, stepmother, and siblings. So we showed that, despite a few negative relationships, we did have positive, loving ones too. (Note: I found out later that they'd asked about such things to confirm that Jaimie's problems were more neurological and not mental or emotional.
The latter are easier to acknowledge, diagnose, and treat.)
From there we moved to my pregnancy and birth with Jaimie; then into the nitty-gritty about when we'd first noticed her behavior. I think the most difficult question for either of us to answer was, “How would you describe your relationship with Jaimie?”
I answered first. “Close,” I said. “She trusts me with everything. With me, she never has to worry that things won't be done wrong because I've learned what sets her off; what she needs to stay calm; how to get her to listen; or even what she'll eat. She still has fits with me but she'll at least let me get close enough to sing to her or do her deep-touch stuff to calm her. But, at the same time, it's also a heart-breaking relationship because I can't love her the way a Mommy is supposed to love their child. It hurts.”
Then Brian asked Steve the same question. Steve said, “Jaimie and I have no relationship at all. She won't let me touch her, talk to her, or even do anything for her. And if I do, she gets worse.”
“So you've been fathering your child from a distance then, Steve,” Brian said.
“Yeah, I guess you can say that,” Steve said. “With Jordy, I can hold her and tell her that I love her and stuff. It wasn't until we had her that I felt like a Dad. I want to help Jaimie; I just don't know how I can.”
I reached out and grabbed Steve's arm. “It's been so hard for him to watch from the sidelines. With Jordhan, he's a very hands-on Daddy. I'm so grateful that he's at least gotten to experience that with her. But I'd still love for him to find a way to experience some connection with Jaimie. And for her to find some way to connect with him. It's too hard this way.”
Brian nodded while he wrote. “That's exactly what we hope to do.”
The interview went on for over two and a half hours. Jaimie was at the end of her rope. Near the end, I had to find Jaimie a coloring book and crayons. She turned her back to all of us and rocked while she colored. I had to end the interview after that.
The psychiatrist came into the room right after I said we needed to go. Right off the bat, she assured us that, in her opinion, Jaimie wasn't autistic but that she definitely had severe sensory issues. She also felt Jaimie had other issues they needed to explore more before an official diagnosis could be made.
“Jaimie seems bright, intelligent, and very interested in her surroundings. I noted many times where she walked up to items or toys and stared at them but chose something else. She didn't make eye contact or interact with anyone but did keep her eye on Chynna the entire time. I also noted her extreme discomfort with transition and with people trying to interact with or touch her.”
It was such a relief to hear someone else saying they saw what we did without us having to prompt them. Jaimie was going to start something called Play Therapy with Brian the following week. What worked for us was there was no talk about drugs—at least not then—and they promised to work within Jaimie's comfort zones.
Of course, they still wouldn't give a solid diagnosis beyond her SPD but words like Obsessive-Compulsive Disorder (OCD) and high anxiety were tossed around. We had to do more questionnaires, more assessments, and Jaimie would have to meet more professionals. I didn't like it but at least things were finally moving forward.
I just hoped they kept going in that direction.
9
HELP!
“Play Therapy is based upon the fact that play is the child's natural medium of self-expression. It is an opportunity which is given to the child to ‘play out’ his feelings and problems just as, in certain types of adult therapy, an individual ‘talks out’ his difficulties.”
—Virginia Axline
Jaimie was just over three when she began her sessions with Brian. I prayed night and day that it ended up being our breakthrough therapy to reach into Jaimie's world. It was our last step before having to consent to more aggressive therapy through the Glenrose because everything else we'd tried until then had failed. And Steve was getting anxious.
Steve and I loved our children, and each other, very much. But when it came to Jaimie, we saw things completely differently. I felt, and what had usually worked with me, that the slow and steady approach was the best approach in dealing with Jaimie. I found if you went too quickly with her or didn't take the time to work something new into her existing routine, things backfired. Steve wasn't completely sold on my view.
He accepted the slow and steady view but thought we that needed to take a much stronger stand with her. “If we coddle her for too long, she'll never be brave enough to move forward,” he kept saying. “We need to take a stand now, while she's young, because it's only going to get harder the older she gets.”
I knew he had a point. But with all the failures we'd had up to that point, I didn't want to put her through any more assessments, reviews, new people or places. I just couldn't do it. Each time she'd fallen down, it took her even longer to get back up again and it hurt to go through it with her. So, we agreed that if play therapy didn't work, I'd agree to give consent to the preschool program at the Glenrose. And, at first, I thought it was going to go Steve's way.
Jaimie hated going to therapy at first. I had to prepare her for three days in advance before her therapy day. It was always a catch-22, preparing her for everything. We did it so she wouldn't worry as much but she did anyway. But if we didn't prepare her, the aftermath would be twice as bad. I learned from the experiences with Donna: always prepare Jaimie as much as humanly possible in advance of upcoming events.
Brian was very helpful by making Jaimie's appointments on the same days. But the entire process started on Friday. At naptime, I'd say something like, “We're going to the school to see Brian on Monday, Jaimie. Won't that be fun?”
“Tomorrow?” she asked. She didn't know the days of the week. But each day had a specific thing we routinely did so she'd remember.
“No,” I said. “Tomorrow we go to the drug store, the meat store and McDonald's for lunch, remember?”
Then there'd be much discussion about how Daddy would drive us to CASA, that we'd take the cab home, have a picnic snack while we waited for it, etc. But she needed to discuss the entire process several times over and over. Then her night frights would be awful the few nights before and the night of, as well as the night after, her appointment. I was always asked why we put ourselves through the agony of pre-warning her about events but, honestly, it was much worse if we didn't remind her or if, God forbid, we surprised her with something.
Obviously we couldn't prepare her for everything but when we couldn't, she'd completely shut down and became even more rigid with her routine. So, we just lived with the excess…excessiveness for a few days. It was better than the alternative. And the routine was even worse when people came to visit.
It was worse whenever we had visitors—even her beloved Grams—because people came onto her turf messing with her routine. Even if Jaimie was genuinely excited for the visit, like she was whenever Grams came up, it was still difficult for her to get through. We had to start at least a week before Grams came, explain that, “Grams comes on a plane and Daddy picks her up. Then she'll come visit us for a bit until bath time when Daddy will take her to her hotel.”
We'd have to go through the same process at the beginning of each day Grams was there because Jaimie had to prepare before Grams came over. Even though she loved her Grams, Jaimie couldn't deal with the extra person around. Then just as she got used to Grams’ presence, she'd have to say goodbye and get used to her not coming over. It was draining.
But even with the best preparation, Jaimie still struggled. For the first several therapy sessions, Jaimie absorbed herself in the play with her back turned to the rest of us and never responded. Brian said it didn't matter because she was working through things even if she wasn't talking to us. I didn't get it. How was this stupid therapy helping her if she was able to act the same way there that she did at home?
Sensing our frustration, Brian asked if he could tape the sessions so he could play it back for us n
ear the end to go over the strengths and weaknesses. “Sure, why not!” we said. By then we were used to being observed, taped and recorded. Boy, what an eye-opener that was.
We were able to see how, even though Jaimie didn't talk to us directly, she was attempting to include us in her play. In one scene, Jaimie played with kitchen stuff and pretend food. She made tea and said under her breath, “I think I'll have some tea. I've had enough coffee this morning.” Steve says that almost every morning he's at home. Then she shoved a tiny plastic cup at him.
“Thank you,” Steve said. “I hope it's Green Tea. That's my favorite.”
“Green Tea. Yeah.” Jaimie said, smiling.
I was floored. I must have missed that exchange while I played with Jordhan. That was the most verbal communication Jaimie and Steve ever had that didn't involve screaming, yelling, and crying…ever. I mean, she didn't look at him or talk to him anymore than that but it was such a wonderful thing to see.
I looked at Steve. “See? I told you this would work if we were patient. She included you in her playing!”
Steve smiled.
“Steve,” said Brian. “That was an excellent exchange. Did you see how her total stance changed when you showed interest in what she was doing without asking a question? That's exactly what you do in free play. Great job!”
It was a positive step in the right direction. A breakthrough. For the first time since she was born, Jaimie tried to find a way to reach out to Steve. She still didn't allow him to do anything for her and got extremely agitated even at the thought of him caring for her on his own, but she tried to let him in.
The Play Therapy route proved to be the most valuable tool we'd come across. Things at home were somewhat more peaceful. Jaimie's night terrors were reduced to one or two per week, her fits weren't lasting as long, her sensitivity to everything didn't seem quite as bad and, most importantly, she used play to communicate with us. All we had to do was sit near her when she'd be playing and she'd either hand us something to play with her or she'd talk to us through her toys. It was wonderful. But, sadly, after a few months Jaimie seemed to regress again.
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