Which Mermaid Was That? Out of state friends visited some months after our daughter’s birth. I was in the throes of Disney ecstasy, believe it or not, after having seen the Little Mermaid with our son, who shared my joy. After all, what could be more reggae fun than Sebastian the crab and the hysterically evil Ursula, sea witch par excellence. You can hear my excitement still. As our friend was a passionate fan of Broadway musicals, I gushed “Richard, have you seen the Little Mermaid yet?” Not missing a beat, he responded, “No, where is she?” Oops, in the crib.
The Little Mermaid’s Trajectory: Of course, since that day, my husband and I often refer to our daughter as such. But what I wanted to share is that the trajectory of this little mermaid, least it get lost in my celebratory accounts of her current achievements, was pretty rugged for years and years. For her, for us, for her brother and for many who came into her world, or, perhaps, whirlwind is more apt a description.
Setting The Record Straight: The purpose of daily postings on parenting adult special needs is to provide somewhat of a mapping for others to utilize. My concern is that folks may be unable to see similarities between their challenging youngster and the young lady I am describing today, and therefore determine that much of this does not relate to their situation.
That would be unfortunate. Without wanting to besmirch our little mermaid’s reputation for manners, empathy and cooperation, she was hell on wheels for many years, much of it due to her developmental challenges, significant speech and language disorder, expressive language disorder, consequent and very significant anxiety and cognitive limitations. You know the drill. (And yes we did try medications, off and on, for years, and everything else).
Transitions: Melt downs were daily, often at any point that she was asked to do something that interrupted something else, i.e. transitions of any kind. Unraveling after school each day was the rule: either she didn’t get some item in the mail or I wasn’t free to take her shopping; she would refuse to go to bed at night or get up in the morning, or go to extra-curricular special needs activities such as Special Olympics swimming. To get her to bed, I climbed in each night with her until she was probably 13 or so.
Family gatherings were punctuated by some outburst, and clashes with her brother, often in front of his peers, were humiliating and heartbreaking. My favorite story was when the bus driver who drove the “little bus” up to our door each day, honking his horn while she fought all efforts to get her out the door, grumbled his irritation to my husband, who responded, “You try raising her.” After that this grumpy old man became my best friend. He got it.
What Changed: It is not like we didn’t try everything, too numerous to list. She did mature, acquire more language, entered individual psychotherapy in middle school to get additional help identifying and expressing feelings, which she became quite good at, and of course, always could dress herself and bath herself. But the issue around cooperation and transition never changed. Never. What changed was we sent her to boarding school and she received 24/7 social skills training with peers and moved in a group to all activities. The one-on-one with mom or dad was replaced with an “it takes a dorm” approach to moving our girl out to classes, to bed, to activities. And she responded. I knew she would from her 4 previous summers at sleep away camp. No longer was defiance and manipulation an option. No longer was it up to two exhausted parents, a few remarkable baby sitters and a frustrated brother, to civilize this child.
She Had The Goods: But our home environment and her academic setting as a wannabe, but not quit a peer, were not enough to sustain the good and offset the not so good. She needed a village. And we found one. Not all special needs children need that…but she did.
Blame The Parents: There are always those who say it is us. You don’t know how to set the right boundaries. You are not consistent. You are too indulgent. You give in. You, you, you. And what I learned is what my husband, in his brilliant succinct manner, uttered that day: “You try raising her.”
©Jill Edelman, M.S.W., L.C.S.W. 2011