Beth, 4.5 years old
For the end-of-school year presentation, my daughter Beth, just over 4 years old, and her classmates file into a Quaker church meeting room. The Quaker church, built in the 1800’s, is attached to the best preschool I could find…very low student to teacher ratio, a philosophy of inclusion (Beth has autism and her classmates are “neurotypical”), focus on friendship, and, most importantly, the school was accepting of the full-time assistant that would accompany my daughter to help her function and cope. I am nervous about the end-of-school presentation, even sweating, but I try to look as happy and carefree as the other parents seem to be. The presentation starts, and the assistant is giving Beth edible rewards to make her stay in line with the other children. Beth could perform very little of the program, because she is focused on on everything else in the room except what she should be focused on and because the integration of body, mind, and surroundings required to do these little songs and dances is way above her developmental level. So instead of singing and dancing, Beth is rocking back and forth, repetitively licking the edible reward off her hands, and she is very much in her own world.
Holding back a flood of tears, I think back over the past year. We had therapists at our house for 25 hours a week, but my child never took well to the therapy or the therapists, and her sleep and bowel issues seemed to take up most of the therapy time. It had been a disappointing and heartbreaking year. In a move of desperation and frustration, my husband and I recently decided it was time for a major shift in strategy. It was time to get off the therapy band wagon and go it alone. We were going from six therapists coming to the house down to just mom and child again. After the presentation, Beth and I say our final goodbye to her assistant, a very dedicated and talented therapist. I cry the entire car ride home, and as I look at my sweet child’s reflection in my review mirror I feel many things about our new beginning…relief, fear, hope, and stress.
Flash forward 4 months to today. I guide Beth into a group music class she has been taking since she was 9 months old. We have had to quit many other types of classes over the past 4 years, but, thankfully, Beth’s love of music helps her overcome her sensory and behavior issues so that she can participate in this class. The music teacher begins by singing the hello song. When it is my daughter’s turn, the teacher sings, “If your name is Beth, stand up!” and Beth stands up. The class continues with sitting circle time, where the children imitate the teacher with hand movements and simple percussion instruments. Beth is doing well with imitation and she is clearly having a great time, smiling and laughing with the other kids. Next, the class gets up to move in a circle while following instructions called out by the music teacher, like walk, run, and skip. The teacher calls out “skate!” and as the music teacher and the other children do the skate move in a circle, Beth walks with them. As she is walking, I see Beth’s gaze move down to focus on another child’s feet, she then looks down to her own feet, and then Beth perfectly imitates the other child by sliding her feet as if she is skating. My mouth drops open. There it is, the Holy Grail of imitation…imitating another child in a natural play setting without prompting. I am so happy I tear up. The transition to going it alone has been pure hell at times (more on that later), but days like this remind me that we are on the right track.
Thankfully my family is not going it alone completely. My husband and I use all that we have learned from Beth’s past therapists every day as we help Beth with her motor skills, speech, and academics. Also, our family gets monthly guidance from a Floortime therapist (a specialist who teaches parents how to move their special needs child up the developmental ladder by using play therapy) and Beth has weekly speech and music therapy sessions. But the 24+ hours a week that Beth spent with other therapists and in preschool is now being spent with me, and we are making up for precious lost time. Our child-parent bond is being restored after being weakened by separation during therapy time, her therapy-induced stress, and my grief watching from the sidelines as she struggled. We are at the beginning of a long road ahead, and only time will tell if we made the right decision to go it alone.