That's when her behavior deteriorated at school and she refused to go. She didn't want to leave me, or baby Sophie, for one second. She got up every hour at night to make sure I was still there. And God forbid she woke up when I was in the shower or somewhere else in the house and she only saw Steve when she came downstairs! It was horrible. Once again, I wasn't able to enjoy the baby inside of me because the one outside of me needed me so much more. And even though I was terrified of what was to happen with our new baby, I worried more about Jaimie.
Trying to find more proactive and positive ways to distract myself, I decided to focus on what I could do. I couldn't control what was going on with the baby, nor had any control over what would happen to her, but I was able to help Jaimie prepare for Kindergarten. Now, I won't lie—if the decision about Jaimie's education had been entirely mine, I would've chosen to home school her. In my opinion, if what surrounded Jaimie upset her so much that it distracted her from learning, teaching her at home combined with enrolling her in a lot of extracurricular activities so she'd still have that social contact, gave her a fighting chance. Steve didn't agree with me.
He agreed with Jaimie's therapists who felt that for a girl like Jaimie, who feared the outside world so much, allowing her to stay at home even more often only encouraged her social fears. So I agreed, reluctantly, to give public school a chance—with a warning: “We'll try this until after Grade one,” I said. “If we find that her social anxieties are the same, or get worse, I'll educate her at home.”
Steve didn't agree but he didn't disagree either. “We have to do everything else that's available to help her before trying that route. I just don't think letting her stay home is the answer. Let's keep it a safe place but not her recluse.”
We researched several schools in our area before finally deciding on one which was perfect for several reasons. First, the school was right across the field from our home so no more cabs. Plus, Jaimie knew the school was close to home so I hoped that would reduce some anxiety and worrying. Second, there was a preschool room down the hall from the kindergarten room so Jordy would be in the school a few days a week too. Third, the school was well-connected with local community programs, such as PUF and Community Options, which helped special needs children integrate with their peers. The bonus above all of that was that Jaimie would have a top-notch Kindergarten teacher in her corner.
“Mrs. P.” as she told her students to call her, was supposed to have retired the year before Jaimie started. She kept agreeing to stay on specifically for children with high needs that tended to get lost in the education system shuffle.
“I have a soft spot in my heart for these kids,” Mrs. P. said during one of our lengthy telephone conversations. “If teachers don't fight for them now and give them the initial tools they need to forge ahead, what will happen to them later on?”
Many parents of special needs children sought out Mrs. P. because of her many decades of experience, her concrete solid connections to various assistance programs in the city as well as her gentle and encouraging approach to helping these children succeed. She was a dream come true for us. I'd talked to her several times over the months in early spring. She'd told me to contact her again closer to the end of the school year so we could make arrangements for Jaimie. By then, I'd be in a better position to give her an update on how Jaimie did at preschool so she'd know where to start with Jaimie in the fall.
It was a load off our minds, and at the best time too, since the next few months proved to be worrisome enough.
~~~
From early May to the beginning of June, I'd gone into false labor several times. I was in the emergency room on almost a weekly basis with pain and to make sure baby Sophie's heart wasn't being adversely affected by the stress my body was under. And, as mentioned earlier, it put Jaimie through a tremendous amount of worry. She rarely left my side. She even refused to sleep, fearing I wouldn't be there when she woke up.
Sophie wasn't due until the end of June. We just prayed I'd at least make it into June before going into full-fledged labor so she had the greatest chance for survival. On top of worrying about Jaimie, I also feared losing Sophie. How does one prepare oneself for the possibility of having to say goodbye to a little life they've felt move, seen on an ultrasound, and heard their heart beating? I was scared to bond with Sophie for that very reason. And, on top of all the worry and stress, I felt guilty.
The last time I went into the hospital, my OB/GYN decided to break my water because I wanted to leave the hospital (again!) and go home to my other children, especially Jaimie.
“You're five centimeters dilated,” she said. “I'm not helping you have this baby in the parking lot! You need to be here. Let's help her come out.”
So our baby Sophie was born on June 9th, 2008 with a neonatal emergency team ready to whisk her off to the NICU shortly afterwards. Jaimie waited in the waiting room with Steve and my best friend, Colleen. Just before they took Sophie to the NICU, Jaimie came in and smiled one of her rare genuine big, beautiful smiles.
We figured Jaimie took a deep shining to Sophie because she'd had struggles early in her life too. When we got to visit Sophie in the NICU a few hours later, Jaimie leaned into her bassinette and whispered, “It's okay, Sophie. I'll never be afraid to hug you. And you can hug me too whenever you want, okay? If your heart needs love to be healthy, I'll give it to you.”
My gorgeous little girl who never felt safe in her own world offered to make Sophie feel safe in hers. After three excruciatingly long days with all of us at home with Sophie still in the hospital, the doctors finally released her. It was found from an echocardiogram that Sophie's heart abnormality didn't affect how her heart functioned so her doctor simply needed to monitor it to ensure it never will. We still don't know what it was and aren't sure it won't ever turn into anything serious but the entire experience taught us a valuable life lesson: To worry only about what we can do something about and to leave the rest to God…or whomever watched out for us. It also taught us to live each day to the fullest and never take anything for granted.
With that insight close to my heart, I promised to do everything I could to get Jaimie into Kindergarten with the assistance she needed to achieve success.
I had the power to do that much.
~~~
In mid-August, after I'd fully recovered from having Sophie, I re-approached the situation with getting Jaimie into Kindergarten with a fresh, positive attitude. What astounded both Steve and I was that by that time, we still hadn't heard from Community Options.
“Just how long is this waiting list that Jaimie's on?” Steve kept asking me. I had no idea but I was more than annoyed. That wasn't our only problem. Initially, the school refused Jaimie's application for Kindergarten.
“Based on Jaimie's age, she should be going into Grade One,” the school secretary said. “We'll have to change her application.”
I was floored. “But we chose to keep Jaimie back,” I said. “She was barely able to handle the social aspect of preschool and you want me to have her skip Kindergarten and go into Grade One? That's not right.”
She didn't know what to say so she left a message for the principal to phone me back. Great, I thought. We'll have to do the pass-the-message-to-the-next-professional-on-the-list shuffle again until someone can answer our questions. Surprisingly, the principal called me back that same afternoon but his response wasn't what I'd hoped it would have been.
“We can't register Jaimie into kindergarten because she's too old,” he said sharply. “I talked to our guy at Alberta Education and it would be more beneficial to Jaimie in the long run if we registered her in Grade One, and then put her in the kindergarten class. We can get the funding for her for the services she requires that way.”
Ahhh, I thought. It all comes down to money. You can get more money if my daughter was in a higher grade. It doesn't matter that she can't handle it; only that you get your money.
I was so angry but too speechless to arg
ue with him. I even tried telling him what Jaimie's needs were but it didn't seem to matter. So I called in the big guns—Steve.
“That's the dumbest thing I've ever heard!” he said. “No, I'm sorry. I'm calling someone from Alberta Education in the building here, and then calling that guy back myself. There's no way my daughter is skipping Kindergarten and chance failing completely just to fit into some jerk's budget. I'll call you back later.”
One of the perks of Steve's position within a government agency was that he had access to other offices in the government. Essentially Steve called the head of Alberta Education in his building who told him, “Your daughter should be fine. Generally, parents decide when they enroll their children into Kindergarten. Obviously, you can't have them enrolling at age ten or something but at five and a half, you should be fine. Call me back if there are any more problems.”
With that information in our corner, Steve called the principal back who stuck with his original idea: that Jaimie was past the acceptable age of registration and had to be enrolled in Grade One.
“So, you're asking me to have my daughter skip Kindergarten, jump into Grade One when she's barely able to keep it together in preschool? My kid is a very bright girl but she cannot handle the social aspect of Grade One. You're setting her up for failure and I won't let you do that to her.”
“Mr. Lepp, your daughter would be in the Kindergarten class,” the principal told Steve. “But she'll be enrolled in Grade One in order to get the funding for whatever assistance she needs.”
It didn't make any sense to either of us.
Fine, we thought. If you want to enroll her in Grade One to get more money, whatever, as long as our daughter was in kindergarten.
Why did we need to fight so hard just to get our child into school? Mrs. P. wasn't happy about it either. Mrs. P. called me the next day. “Jaimie is registered in Kindergarten,” she said. “In this province, it's up to the parents to decide when their child will start school. I brought in someone over the head of who the principal talked to in order to clarify that fact to him. Don't worry. Jaimie is in Kindergarten and she'll be with me.”
I was so relieved. Finally, we had someone on our side—standing beside us, making sure Jaimie got the support she needed. Mrs. P. even helped us cut through all the red tape at Community Options. After a few phone calls on her part, I was told Jaimie would have the assistance she needed! I was speechless. Mrs. P. brought us further ahead and connected us to more help than we'd ever gotten either on our own or even through CASA.
Mrs. P. said I'd have to attend a meeting with her, the vice-principal, and representatives from the place giving assistance. She told me to bring as much information as I could—not only on SPD but also all of Jaimie's assessments, diagnosis, letters, reports…anything and everything I had that gave insight on Jaimie's situation. “Bring Jaimie too,” she said. “That way, she'll remember our faces when she starts next week.”
On the day of the meeting, a few days later, I stuffed copies of letters, reports, assessments, copies of Donna's therapy notes and her final report, letters from CASA (specifically the one the psychiatrist had written), and information on SPD into a big file folder. Heck, I even brought along my worn and ragged copy of The Out Of Sync Child and the children's picture book I wrote and extra sources!
As Jaimie and I walked across the field to the school, I tried easing Jaimie's mind about going to Kindergarten. “This is the way we'll come to school every day, Jaimie—except that we'll have Jordy, Xander, and Sophie with us too. And on Tuesdays and Thursdays, Jordy will be right here in the school with you.”
Jaimie didn't say a word the entire walk. But she reached up and grabbed my hand. I squeezed it as we opened the doors to the school. Mrs. P. was there waiting for us.
“Mrs. Lepp? I'm Kathy,” she said, sticking her hand out to me. I put my hand in hers but mine was ice-cold. She knew why too. “Oh my goodness, love. Don't worry. Everything will be fine.” She bent down to Jaimie and said, “Why don't you grab your Mommy's hand and come with me, Jaimie.”
Mrs. P. took us into the vice-principal's office where I met, and gave icy-handshakes to, the vice-principal and the representatives from the community assistance place. Even though I was nervous, it was different from every other meeting I'd had in the past. I wasn't asked millions of questions—they already seemed to understand everything. In fact, as soon as I said Jaimie had SPD, the head of assistance program said, “Ah…so we'll need to get her things like some sensory seats or one of those big eggs from IKEA. I'm assuming Jaimie can be both avoidant as well as seeking, correct?”
My mouth dropped and I nodded.
He waved his hand at me and smiled. “Mrs. Lepp I have a lot of experience with sensory sensitive children and children with SPD. Don't worry. We'll get what Jaimie needs. Why don't you give me some of Jaimie's case history so I can be sure to be in close tuned with those needs.”
I handed him my file and he took what he needed. “I see she hasn't been in actual therapy for awhile, right?”
“We had to stop her sessions with Donna because something about Donna bothered Jaimie so much that she wasn't able to concentrate on her therapy. Then we were taking play therapy through CASA but Jaimie wasn't getting what she needed from the program anymore. Now…it's just me.”
He nodded. “I know Donna well, actually. She's top notch. And I'm in close contact with the head psychiatrist and other therapists from there too. I can get any additional information I need from her. This is perfect.”
Jaimie wasn't able to sit still so Mrs. P. asked her if she wanted to go get a few books and bring them back. Jaimie looked at me with a wrinkled brow “It's okay, honey,” I said. “I'll be here when you get back. Go ahead!”
After Jaimie left the room, the assistance reps and I discussed more specific details of Jaimie's needs: her triggers, her reactions to things, her need for routine…everything. They actually understood everything I was talking about. They explained they'd have to do periodic assessments on Jaimie to be sure she continued getting the resources she needed and that the funding was still provided. “Nothing will be done without your permission and you can be there for the assessments, if you'd like to.” they said.
Jaimie bounded back into the room with an armful of books. Mrs. P. gave me a “thumbs up” sign. I eased. After a few more minutes of light conversation, so that Jaimie could read her books, we went home. And, for the first time since Jaimie was born, I felt an overwhelming sense of hope.
During that meeting, I was listened to and respected—which was both surprising and a relief. The funding manager had even heard of SPD and knew what Jaimie's needs were without my even having to clarify anything. I began to cry from the overwhelming feeling that finally… finally someone cared enough to listen and follow through. For the first time since Jaimie was born, I felt we were in the right place and in the right hands. Obviously, Steve and I had to continue advocating for our daughter so she didn't get forgotten about but we felt we were on the right path.
Mrs. P. is the sort of teacher who focused on a child's strengths and didn't let him or her use their special needs as excuses not to do things. She gave them options, made them feel good about their choices, and built up their confidence so they could feel good about independence. She and I set up bi-weekly meetings in order to keep a strong connection between school and home, and to maintain consistency. That's so important to Jaimie's success. And if Jaimie felt a connection between her safe place and her learning place, she'd feel good about going. That's what we wanted.
I was worried on Jaimie's first day because she broke down and was so frightened—it was like Fun Factory all over again. But Mrs. P. guided Jaimie into classroom to choose her activities. Jaimie still struggled with a high amount of anxiety so Mrs. P. always warned her and me several days in advance for sensory stimulating activities they did, walked Jaimie through everything step-by-step, and taught Jaimie how to “use her words.”
Mrs.
P. seemed to “get” why school may seem so stressful to Jaimie most days when it was no big deal for other children. And she shared the philosophy of Carol Stock Kranowitz of why children like Jaimie would find school more difficult than others do:
School pressures children to perform and conform to the norm. Most children will do what he or she can to meet those expectations where children with SPD will meltdown.
School environments have transitions that are fast-paced. Children are expected to move from math to reading to another activity with no break in between. Children like Jaimie struggle with these transitions because they need more time to adjust.
There are a lot of sensory stimuli at school. Other kids sitting close, flickering lights, echoing sounds, different smells—these can all overwhelm a child with SPD, who will overload and meltdown.
For other children with SPD, sitting for long periods of time with no way to release pent up energy can be excruciating. When I picked Jaimie up from Kindergarten, she couldn't get out of the building soon enough. She ran to the field between our townhouses and the school did somersaults, spun in circles, and sprinted around. In the winter, she needed to throw herself into the deep snow.
The way lessons are presented may not be suitable to a child with SPD. Jaimie, for example, needs to see things to get them and/or feel them if she's in that mood. In a classroom, lessons that are verbal only and with no visual aides were difficult for her.
Teachers, educational administrators, and other people often misunderstand children who display SPD symptoms. They seem to want to help but aren't always able to—or want to—accommodate their special learning needs.
Not Just Spirited Page 13