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August 26, 2002
(*Some names have been changed to protect privacy.)
August 2002
We had gone for Jarod’s OT evaluation on July 30. Jennifer asked me about his medical history and tried to engage Jarod with some blocks. She sat him on her lap while we talked and she made notes. I had brought the same foods that I took to the clinic. After the initial history was done we went to a smaller room filled with toys and little high chair. She put Jarod in while he reached out for me. She tried to feed him the sweet potatoes first. Soon all of us were splattered with orange spots. Then Jennifer tried the fruit dices. She forced a tiny piece into Jarod’s cheek pocket. I was very uncomfortable watching this and Jarod kept reaching out to me. He was crying and slapping Jennifer’s hands away. Finally, after forcing him to eat three fruit dices she stopped and gave me her assessment. She said he was pushing the food to the front of his mouth and playing with it instead of chewing it. She gave me some instructions before she went to get her appointment book. I was to feed him all his meals and bottles in the high chair at home. Stretch his cheek pockets with my finger five times a day and before each meal. Put the food in alternating cheeks at each bite. She agreed with what Terry had said about making my own baby food and mixing it 25/75 with the jar food, gradually going up to all homemade. She wanted to see him every week. I left feeling tired and old. Jarod was exhausted and he was asleep before our car left the parking lot.
The morning of the speech evaluation was sad for me. I congratulated my brother and made a vow to get him a nice gift. The appointment was at 2:00 and we made it on time. Roan gave me some forms to sign and a fee schedule. The evaluation was going to cost $175.00. Thankfully, I had enough in our checking account to cover it. She asked Jaida to sit at a desk in the corner and the testing began. Jaida answered very well on the one word picture vocabulary portion. It was when Roan gave her two-part commands that the trouble started. She instructed Jaida to take a pencil and put it under her chair. Jaida put it behind her back on the seat of the chair. I was trying to pay attention and keep Jarod from destroying Roan’s beautiful living room. Jarod was not accustomed to being ignored. Roan wouldn’t look at him and he was upset. Fortunately, they were done in an hour. I thought I would have to take Jarod outside.
Roan gave me her opinion and she said Jaida needed speech therapy. She said that she would score the tests over the weekend I could come back on Monday for the results. I went to her house on my lunch break the following Monday. I could hear a small child in the background while I waited on her porch. She opened the door looking flushed. She asked me to sit in the parlor and she said she would be right back. I sat on a beautiful settee and soon she came back with her legal pad and some papers. She asked about Jaida’s medical history and other things. We talked for several minutes and then she gathered her papers and took a long deep breath. “Mrs. Bush,” she said cautiously, “I feel that Jaida definitely needs therapy.” I nodded in full agreement as I said that was exactly what I thought. Roan was very apologetic and she kept saying she had tried to help but she hadn’t done anything. I told her that she had finally given me a way to explain Jaida’s problem and I was grateful for her help. She said her initial recommendation was twice a week, that would possibly change after she finished scoring the tests. I heard the child again and Roan said it was her grandson. Her other daughter was keeping him busy while we talked. Roan promised to finish the scoring and get the report to me in a few days. I thanked her and headed back to work.
After I got the report, I called the preschool program and told them I wanted to meet with them to review and revise Jaida’s IEP. *Sherry, the director, tried to put me off by saying, “The current IEP doesn’t expire until October. Judging by her scores from May, she tested well within normal limits.” I guess she was counting on me not knowing my rights. I told her that Jaida had been evaluated by a private speech therapist. When she saw that I was not giving up easily, she put me off. She said she would have *Carrie, the teacher that visited Jaida at her school, call me to discuss it further. A day later, Carrie called me very puzzled as to why she was contacting me. I explained about the private evaluation and that I had called Sherry to review Jaida’s IEP.
Carrie said she would have to talk with Sherry to schedule a date and get back to me. I knew Sherry would be the one to decide all this. I was a little annoyed that she had tried to confuse me into thinking that I was not due an IEP review. In retrospect, I realize now that I should have sent my request in writing to create a proper paper trail. If it’s not documented, it never happened.
Jarod’s first official OT session was August 9, and I was very nervous. After what had happened at the evaluation I didn’t know how I would handle seeing him so upset. It was a repeat of the last visit. Jarod cried and screamed. Jennifer had suggested taking him to the room alone. My presence might make him more upset, she said in her usual matter of fact tone. She said I could walk down after they got settled and watch thru the two-way mirror. Of course, I was too jittery to sit in the lobby for more than five minutes. I pushed the empty stroller to the OT/PT room and went cautiously thru the office area. I saw them in the tactile section of the room. I quickly ducked behind the open door and watched thru the crack. Jennifer was trying to get Jarod to put his bare feet in a large wading pool filled with rice and hidden toys. He was resisting with all he had. She moved him to a balance beam that looked like a lower version of the gymnastic kind. She sat down and pulled/dragged him onto it. He was trying to get down and then it happened. He saw me thru the large crack and began to cry louder. I ducked back into the office and listened for the door to the small room they used to close.
When I was sure they were in for good, I went to peer thru the two-way mirror panel in the door. Jennifer was handing Jarod different sensory toys and he was giving them all back. One by one, he waited for her to take a vibrating chew toy, some rough legos and the rice bucket lid. When he finished, she put him in the highchair and secured the tray. She pulled out the food I had brought. Jarod realized what was about to happen and he tried to struggle free. Jennifer forced a spoonful of sweet potatoes into his cheek so hard he looked like a squirrel. He cried and she kept on undaunted. After what seemed like forever, she pushed open the door and invited me into her chamber.
When I took a seat on the mat she asked about how the homework from the feeding clinic was going. I told her Jarod was getting over a cold and we had been a little lax on the highchair rule. She barely hid her disgust, “So he’s had no structure,” she muttered with a sigh. She asked where he had sitting while he drank his bottle. I answered truthfully, “The sofa or in a chair beside me.” She let out another sigh. She decided to move on to his other sensory delays. “He needs lots of work with climbing and you should take him to a park. Let him get on the regular swings and the slide.” I must have been looking skeptical while she was talking and I was telling her that he did climb at home all the time. Besides, Jarod would be dwarfed by the normal sized playground equipment.
Finally she had had enough of me. “Do you think we know what we’re talking about and that this is going to work?” She waited expectantly for the answer she already knew. “I don’t know,” I said as I fought back tears. Jennifer continued, “Every time, I try to talk to you, you look at me like, ‘yeah, right’ and I just need to know if you plan to be serious about this.” I told her I was having a hard time with the thought of forcing Jarod to do something unpleasant when I brought him to OT. She scoffed and said, “You don’t have to do any of this. Nobody is making you do anything. If you don’t come it won’t hurt my feelings at all. I’ll be sad for him because I know he needs this. If you’re not gonna do this, we need to know. CRS (Children’s Rehab Services) is paying for this and it’s a lot of money. I’m only being realistic.” At that moment, I felt really low and I was even closer to tears. I think Jennifer sensed I was unsure of what to say and she got up and left the room to get something. She came back with a thick copy of a milestone assessment booklet and an OT therapy activity booklet.
She opened the assessment booklet and showed the age level for Jarod and a list of all the things he should be able to do. She talked quickly and licked her finger as she flipped pages. “This will give you an idea of what to look for in each developmental area,” she said. Then she showed me the activity book that had symptoms of sensory integration dysfunction and the warning signs. “He needs a lot proprioceptive and vestibular stimulation,” she said. I nodded obediently and took the books as she said I could take them home and look them over. “I normally don’t even show parents these,” she said. Then to signal we were done, she started cleaning up the room. I gathered up Jarod’s things and repacked his bag. We walked out of the room together and she called after us, “Bye Jarod, see you Monday.” Jarod, limp as a dishrag and exhausted from crying just looked at her solemnly. I took him home and I went back to work. I decided that I couldn’t let my feelings get in the way any longer. Maybe these people knew more about my child than I did. I couldn’t take their comments and remarks personally. I had to do what was best for Jarod. They could insult me all they wanted, as long as he would just EAT. Please, God, let him eat. I decided that I had to get with the program and try it at least. I made a vow to get some of the items I had seen Jennifer use and teach my mom to work with Jarod. I could give it my all and see what happened, right? I was beginning to accept that Jarod was not as normal as I had fooled myself into believing. The fog of denial was slowly lifting.
Until next week,
Kim, Jaida & Jarod
----------Talk To Me----------------------
Did you get what you expected out of your child's therapy sessions?
How did you handle seeing your child upset?
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