Love the gift of who you are and love yourself

Kristi Sakai

My 8-year-old daughter, Kaede, is warm, friendly, caring, empathetic, has a wonderful sense of humor … and she has Asperger Syndrome. We’ve often heard, “She’s too social to have autism.” Her personality and delight in pleasing adults has sometimes overshadowed the black-and-white diagnostic criteria of autism spectrum disorder. Yet, even as she fluttered around like a little social butterfly she has faced challenges. For years she has had periods of excelling as she is highly focused on pleasing others, followed by an inability to manage in the school environment and deterioration of her behavior. She seems to be driven by high expectations of herself and the desire to please others – until she reaches her limit and hits overload. Yet throughout her struggles, Kaede continued to maintain her optimistic view, “Everyone is my friend,” she exclaimed cheerfully. She carried a seemingly unshakable sense of who she was, “I’m really smart!” and “I am great at drawing!” … until this year!

It has been painful to watch my daughter lose both her rose-colored glasses and her sense of self. A new Kaede emerged: wary, uncertain, anxious and depressed. And very, very sad. Initially it didn’t show up at school: she continued to do well academically and to generally be cooperative. Meanwhile at home there were daily morning meltdowns before school, which grew to include nightly meltdowns due to her anxiety over school the next day. She’d sleep fitfully, tossing and turning.

We gasped when she began saying, “I’m DUMB!” and “I’m fat! I hate myself.” We cringed as we watched the frequency of her self-injurious behavior increase; we held her hands gently away as she’d pound her fist against her forehead or bang her head against the floor in absolute angst. “I don’t want to go to school!” she’d cry for an hour or more at a time. We saw our daughter who had been so full of spontaneous laughter and joy become dispirited and mired in hopelessness.

At a loss as to what particular thing or event was the culprit of this tragic change in our daughter, we threw ourselves into the task of rooting it out. We looked carefully at her medication, but although adjustments have been ongoing, they haven’t made a significant difference overall. We redoubled our efforts at home by being sticklers about keeping to routine and structure to provide the extra reassurance of “sameness,” but it still didn’t seem to relieve much, if any, of her anxiety. We kept in close contact with the school staff, asking if they saw signs of about what was causing our daughter so much distress. They were often dumbfounded at my descriptions of her behavior. It wasn’t that they didn’t believe me, but they were not seeing the Kaede I was describing; she was holding up well at school.

Finally, we found some clues in an unexpected place. ABC News filmed a segment of Nightline on girls with autism featuring Kaede. Watching the footage of our daughter ineffectively approaching child after child in the gym during recess, only to be turned away, spoke for her in a way that she had been unable to do herself. It was painfully clear that our daughter was dwelling on the lonely social fringe at school. We were aware of this to some extent, but it was a heartbreaking revelation to actually see it.

The school staff compassionately tried new strategies to help Kaede with her social engagement, such as forming a small club rather than subjecting her to unstructured recess. Still, she continued to deteriorate, even spilling into her school day as she reached her tolerance saturation point.

After seeing a wonderful woman counselor, my daughter later made a tearful confession to me: She was being mercilessly teased. An increase of seizure medication has had a corresponding increase in her weight, and that hadn’t gone unnoticed by some of her peers, who zeroed in on this all-too common vulnerability, especially among girls. When Kaede could no longer hold herself together, she’d cry, and this too became a point of teasing. Her desire to socially please others had kept her from telling anyone about the bullying, out of fear the other kids would get into trouble and/or be angry with her.

It is an ironic injustice that in her increasing maturity, she is becoming most aware of her differences at a time when they are being so cruelly pointed out to her. In her lack of ability to fully understand her own emotional reactions, she has internalized her embarrassment and shame. This began a dark downward spiral in her self-esteem that is so profound that when others left off insulting her, she continues to bully herself more cruelly than anyone else ever could.

Kaede used to be proud of having Asperger Syndrome, of being unique, of having her own view of the world, but she currently does not value or embrace these qualities within herself. Her view has become distorted because the world has revealed to her that she is different – and different means “bad.”

As parents it is heartbreaking for us to see our children carry burdens too heavy for their slight shoulders, especially when we don’t know how to relieve their suffering. We hurt for them and fear what impact it will have on the direction of their lives. Throw Asperger Syndrome into the mix, and the issues are compounded and our worries increased. Solutions do not always come easy. This requires significant intervention and tremendous support in many forms, among others: participating together in activities to increase Kaede’s sense of mastery and self-esteem, working on the weight issue together (we love the YMCA!), working closely with the school staff to develop effective structure, supports and supervision, providing her with a counselor who she can confide in as she matures and faces new challenges. We also look to the women with Asperger Syndrome who continue to pave the way for girls like my daughter by helping the world understand what it is to be female and have autism as well as to be positive role models for her to look up to. I know it’s going to take a great deal effort to turn the tide, to sway things in favor of my daughter believing in herself once again, but I do choose to believe she can eventually emerge with new strength and insight about who she is and what she is able to accomplish. I believe this because I believe in her.

There is no instant fairy--tale ending to this story because it remains to be finished. But … Kaede, perhaps when you are grown you will read this. Though you will recognize the challenges you faced, I hope you will also see yourself as we see you now: strong, capable, talented and beautiful. Love the gift of who you are and love yourself.

Kristi Sakai a.k.a. Kaede’s Mama is the author of Finding Our Way: Practical Solutions for Creating a Supportive Home and Community for the Asperger Syndrome Family

Courtesy of APPC

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