One morning, I took her and Jordhan to the park by our house. We were there for about twenty minutes when the children from a local daycare flooded the park. A little girl came over to introduce herself to Jaimie, who was digging a hole in the sand. After a few minutes of the little girl trying to get Jaimie talking, Jaimie screamed and ran off into the field. That wasn't the first time she'd done something like that but I was so hoping it wouldn't happen again for a long time.
The poor little girl looked at me with tears in her eyes. “I'm sorry.” she said.
I touched her cheek and said: “Don't worry. You didn't do anything wrong. Jaimie just isn't used to other kids. Thank you for trying.”
Then I grabbed Jordhan, carrying her like a football and speed-walked after Jaimie. (Not an easy task at six months pregnant!) She never ran too far away. Only far enough to get away from what scared her but still close enough that I could still see her. That didn't mean she'd make it easy for me to get her home, though.
“C'mon Jaimie, honey,” I said. “I know something upset you at the park. Why don't we go home and talk about it.”
She sat in the grass, hugging herself. “No.”
I knelt beside her with Jordhan hugging my side. “Can you tell me what happened? Or what we need to do to make you feel better.”
She flew herself backward into the tall grass. “No.”
I could have cried. What was I supposed to do?—sit in the dry, itchy grass for hours until she felt like talking to me. Then Jordhan had a suggestion: “Spin.”
Jaimie stared at the clouds. I watched Jordhan from the corner of my eye as she got up, spread her arms out, and twirled around. Jaimie didn't move for at first. Then she got up and spun with Jordhan. What a smart girl Jordhan was—not quite two, but knowing what things made Jaimie feel better enough to talk.
The girls spun for a while. It didn't even matter that mosquitoes were snacking on us; only that Jaimie calmed down. Both girls crumbled into heaps on the grass as they laughed. Things almost seemed normal.
“I need to go down the twisty yellow slide, Mama. That girl stopped me.” Jaimie said out of nowhere.
Jaimie had a routine at the park: swings, hole digging, go down all the slides once, and then go home for snack. The girl interrupted her.
“Go. Then we'll go home for snack,” I said. Jordhan and I watched Jaimie run to the slide. When she came back, it was like nothing happened. She felt better. This was wrong and so unfair. There was no way Jaimie's obsessiveness with her routine, or her reaction to having it interrupted, had anything to do with her SPD. And when I talked to Steve about what had happened later on, he was livid. And he let Brian know.
“Okay, we've been coming here for several months now and what we've learned has really helped us at home, especially with me and Jaimie,” he said. “But we've got to get moving here. Jaimie is getting worse again, she's turning four soon and we can't put her into a class with other kids when she's like this. We need some direction; a plan. I don't want my daughter to get further behind than she already is.”
Steve is a man who never talked much unless you asked him something, or if he was really angry. And when it came to his kids, don't mess with him. It was great to have him be the one handling the reins for a change. And Brian seemed to listen to Steve better than he did to me.
We were set up for a meeting with the head psychiatrist for a review of Jaimie's file and to see what further options we had. Like Steve said, Brian had given us so many important tools to work with Jaimie and play therapy was such a blessing. But it simply wasn't enough. Jaimie needed more because even though she was better on some levels (coping), she was the same or worse on others (sensory, tantrums, social interaction, etc.) And Brian wasn't able to give us any further options or direction. We needed a higher source.
I was so nervous about that meeting for several reasons, but mainly because: (a) I knew Jaimie would leave there with even more labels that she already had, and (b) I had a feeling that drug therapy would be given as an option. But we wanted to talk to the “Head Cheese” because she was who'd be able to get us through the red tape we faced. We'd patiently put our time in for months to be able to meet with the psychiatrist. Jaimie needed her help.
The meeting was conducted in the doctor's office—a room very similar to the therapy rooms only a bit neater and more organized. One side of the office was tailored to the younger patients: mini kitchen set, table and chairs, toys, stuffed animals, and puppets. The other side was more office-like with her desk, meeting chairs, and shelves stuffed full of therapy books. The lollipop tree on the corner of her desk—basically a Styrofoam tree with suckers sticking out of it—was a reminder of the Dr.'s softer side (and believe me, we needed that reminder several times throughout our interview.)
We filed into the small room and were ushered into seats beside the psychiatrist‘s desk.
“I hope you don't mind,” she said over her glasses. “We have an intern with us today.”
It didn't make any difference at that point. We were all getting used to telling our story to different faces, or groups, at a time. She'd obviously reviewed Jaimie's file, which grew to over two inches at that point, before our arrival because we barely had to give her any information on our history.
“What are your primary concerns with little Jaimie?” she said.
I looked back at Steve who seemed as confused by the question as I was. Surely if she'd read the file, or had been briefed by Brian on a monthly basis, she'd already known what our primary concerns were.
I spoke first. “Well…uhm…mainly we're most concerned with all of the things concerning everyday living like her bathroom issues, her eating problems, her social issues, and her sleeping problems. We're used to her sensory stuff and her fits. Those seem to change from day to day based on the other things. We figure if we can help her with those other areas, her fits and stuff may go down. Hopefully. That's why we're here—to see what we can do.”
Steve nodded. “We just want to get going in a solid direction because things are starting to stand still again. We're tired of putting her in things that don't work.”
Actually, at that time, Jaimie's toileting issues were the highest concern. Yes, she restricted her foods because of textures but the girl held her poop for several days at a time. We tried putting her on the potty or toilet but you can't make a kid poop if they don't want to! It was so bad at times that if we'd gotten to three or four days in a row—worse than when she'd been a bit younger—without her pooping, we had to give her a suppository and, believe me, it took several hours to days before she got over that. Her doctor ended up putting her on laculose (an orange-colored sugary syrup) that softened the stools enough where the person can't hold it in. Because the dose her pediatrician put her on wasn't working; the psychiatrist increased the dose and its amount.
She also gave us another questionnaire based on anxiety. Essentially, we learned from the two-hour meeting was that on top of her SPD, Jaimie had General Anxiety, Separation Anxiety, severe Social Anxiety, and Obsessive Compulsive Disorder. The Doctor said that Jaimie's anxiety most likely stemmed from her SPD issues and her inability to cope with it effectively. Then she reached into her desk and pulled out a yellow pamphlet on anti-anxiety/anti-depression medication—SSRIs.
“I know you don't want to treat Jaimie with medication,” she said. “But I wouldn't rule it out completely. If Jaimie is dealing with all of this anxiety on top of her sensory issues, it's no wonder none of her prior treatment is effective. The medication may help calm her enough to be able to concentrate on her treatment.”
She then turned to her intern to explain why she said what she did and to discuss the medication. Steve's jaw clenched so tightly I thought it would pop out.
“Excuse me,” he said. “I don't mean to interrupt but what the hell are we supposed to do with all of this?”
The doctor frowned. “What do you mean, Steve?”
“I mean you give us all of these labels
and tell us to put her on drugs.” he said. “That's not a solution to me. A three-year old kid doesn't need drugs. I can go to our next-door neighbor and buy drugs. We came here for some guidance…a solution.”
“We made it quite clear we won't consider drugs for Jaimie.” I said. “At least not at this age. Surely there's got to be a more holistic way to treat her at this stage.”
The psychiatrist leaned forward. “Yes, there's diet, the play you do with Brian, there are some preschool programs at the Glenrose that I head. There are other approaches but all we're saying is don't rule out medication. If it's something she needs later on, be open-minded to the idea. Okay?”
We gave consent to have a community outreach program contact us. We were frustrated. It was the same thing as always: consent, waiting list, patience, failure. Maybe we weren't pushing hard enough; maybe we weren't making ourselves clear enough; maybe Jaimie needed to have an all-out throw-down meltdown for anyone to totally understand. We stuck it out with CASA for about six more months, and then tapered off our therapy. We didn't want to cut ourselves completely off from CASA because they were an awesome connection to other programs. But it just wasn't helping. In fact, it was only making things worse.
~~~
We had one more meeting with Jaimie's therapy team when her fits worsened again. The second meeting was much more relaxed and so was the doctor—perhaps, because there was no intern observing her. Either way, our concerns were still the same and we still refused any medicinal treatment. That time, she gave us a few more options.
“First of all, let's help poor Jaimie with her elimination difficulties,” she said. “I understand her fussiness with eating and that most likely isn't helping this situation. I'm going to give you a few recipes for treats—or what she'll think are treats—that are actually extremely high in fiber. That will be a start.”
She then gave us a few pointers in helping introduce foods into her diet while still respecting her high textural sensitivities. “Why don't we have an additional place mat for her or bowl at the table so that she can put the foods in her mouth, give them a try, then have the option of spitting it out if it feels too much for her. At the very least, she can taste these foods and may even surprise herself by liking them when she isn't too sensitive.”
I didn't mind the idea but Steve didn't want Jaimie getting into the habit of being able to spit out her food. With Jaimie, we'd always had to be careful what we introduce because she worked things into her routine and once there, it's even more difficult to change it. But it was an option.
“Now, we have to find a way to help Jaimie cope with her anxiety so she'll let herself sleep. You've said that her sensory symptoms are much worse when she's tired, correct?”
We nodded.
“What we need to do is introduce some quieter activities before bath and bedtime, which you two have done a wonderful job at maintaining for her. Let's start reading more books, or doing some quiet time listening to music, or even getting her to be in her tent before bath. No wrestling, Dad, okay? No running around, no crazy activities.”
Steve repressed a laugh after she winked at him. “Now, Chynna, let's try and talk to Jaimie and work more on getting her to use her words. And we have to use the advice Brian is giving you about helping her associate words with her feelings. She has extremely strong verbal skills. Let's use that to teach her to connect to herself and to us.”
Her greatest concern seemed to be with getting Jaimie into preschool. “We need to find some sort of program to get Jaimie into. If you want, I can put to get her into one of the Glenrose programs but she may not qualify for most of them anymore, mostly due to her age. Keep in contact with Brian about options. I'll bet that many people guess Jaimie's age incorrectly because of her height. And when they find out her real age, their expectations are higher, because they don't understand her special needs. The way I see it, if we don't get her into a program soon, she'll never feel comfortable enough to be around other children.”
Actually, she knew Jaimie would technically be supposed to start kindergarten in the fall, but didn't even feel she'd be able to handle preschool. Even Jaimie's pediatrician told us that if we weren't more aggressive in getting Jaimie help, she'd never be at the same social level as her peers. He also told us not to turn our backs on Jaimie's psychiatrist as she was an invaluable resource. We knew that. And we were trying to take advantage of that resource.
After that meeting, a letter on our behalf to a place called Community Options where Jaimie was supposed to obtain assistance with school as well as to receive some sort of assistance at home. We got our copy of their letter, which she warned us would be an absolute worst case scenario in order to get Jaimie help, then we waited. And waited. And waited.
In fact, Jaimie went through an entire preschool year without ever hearing back from any of Jaimie's therapists or Community Options. And when I called them for myself to find out what was going on, we were told that Jaimie was on a waiting list. Again.
I was told that because Jaimie didn't have any other disabilities or difficulties, she may not qualify for assistance in school or anywhere else. Jaimie had strong verbal skills, was eager to learn new things, and had average fine and gross motor skills. All that was really “wrong” with her was her SPD and the anxieties that she's also been diagnosed with.
Apparently, Jaimie wasn't considered disabled enough for assistance even though we struggled most of the time just to get her dressed or go to the bathroom or even get her to eat or dressed. Jaimie didn't even have the skills to function normally with kids her own age or cope with normal sensory stimulation the way other people could but nobody felt she had enough of a problem to need assistance. Or that we needed help to be proper parents to her!
I realized that if we wanted to get anywhere in helping Jaimie, we'd have to be more aggressive, more assertive, and even greater advocates. Not only did we have to inform people what SPD was and how to help Jaimie function in their world, we also had to fight just to get her into the same programs as her peers.
Jaimie fought on her own far too long. That was it. I decided to use every resource and talent I had to do what we needed to do. I was going to be the voice Jaimie didn't have and people were going to listen.
No matter what!
10
Babies, Brain Food, Jenna, and Fun Factory: Our Holistic Approach
After the last meeting with the psychiatrist, I started researching nutritional options. Honestly, because Jaimie ate so little as it was, I was a bit nervous messing with her eating. But we'd committed to more holistic, natural therapies for Jaimie so I knew something needed to be done. One thing to change was creating a “brain-friendly” diet for Jaimie.
Because SPD is a neurological disorder, it was important to make sure Jaimie got a lot of healthy brain food, including “good” fats such as Omega-3. Of course, all children needed healthy brain foods but, as I found out, it's essential for children with SPD for three important reasons:
(1) The brain is 60% fat. If we don't give the brain healthy fats, it'll get it anyway it can and that's when we turn to the naughty saturated fats. Children with neurological disorders, such as Autism and SPD, are susceptible to becoming junk-food junkies because their brains crave fat but they don't choose the best ones;
(2) Many children with SPD have a tendency to avoid many foods due to their sensitive senses regarding smell and texture. This can lead to missing the crucial vitamins, minerals, and fats, which their tiny brains need to cope with their symptoms. Learning how to sneak those brain foods into their fussy diets is a bonus; and
(3) Nutritionists who specialize in SPD and sensory sensitive children have discussed how making simple but important changes to the diet can dramatically reduce sensory symptoms.
Bearing all these in mind, the following were the most important foods that I was told to include into Jaimie's overall sensory integration diet:
(1) Oily fish such as wild salmon, mackerel, and tuna are all
packed with DHA (docosahexanoic acid—try to say that five times!), which is one of the best forms of Omega-3.
(2) Nuts, especially almonds, are a great source of fats, vitamins (B and E), and minerals (magnesium) and, apparently, excellent for the brain's grey matter. In layman's terms, grey matter is an essential component of the central nervous system, which helps in the routing of sensory and motor messages throughout the body. The main target of SPD is the nervous system, particularly the autonomic system. So get those children nutty about nuts (if there's no allergy, of course.)
(3) Berries like blueberries and strawberries contain antioxidants and help with coordination, memory, and cognition. Sneak these luscious berries in a smoothie with some flax seed oil for a tasty brain-powered snack!
(4) Veggies containing antioxidants like the vitamins C and E, such as bell peppers and broccoli. Yes, even children without sensory sensitivities protest broccoli but try it with cheese or healthy dips!
(5) Yogurt contains tyrosine, which is known to give you a little pick up and increase mental awareness. Try Greek yogurt to avoid the extra sugar found in the flavored sorts. You can always add a child's favorite fruit for some extra flavor.
(6) Beans are an excellent source of B vitamins and fiber. Mashed up, they can be a great addition to sauces, dips, and soups.
(7) Flax seeds and oil are a fantastic source of Omega-3. The seeds would need some getting-used-to but the oil can be mixed in with muffins, cookies, smoothies, and other treats.
(8) “Smart” oils like walnut, flax seed, olive, and avocado are all excellent sources of Omega-3. Cook with them; make salad dressings or dips with them. They all have a stronger taste, however, and a child with a more sensitive palate may need to get used to them.
Not Just Spirited Page 10