My 19 year old daughter is an awkward rapper, on her own terms. Her umbrella diagnosis is tuberous sclerosis complex, but one of the tangential diagnoses she carries is autism spectrum disorder. Without going back through her medical history, Id like to talk about her amazingness and how incredibly brave and fascinating her journey has been. The funny thing that’s happening now is she’s becoming aware. For so long, it was almost merciful that she was not, as the abundance of the awkward looks of combined sympathy and condescending confusion, flew right up over her head. Now, not so much, so in some ways it pains us, she and I , but in other ways, we all clap our hands.
Her autism is atypical which is an oxymoron in and of itself. She develops obsessions, narrow focused interests which have changed and become more and more complex and intriguing over the years. We talk about the past obsessions almost like old funny friends we’ve come to shake hands with and send on their way. Some were, in retrospect, absolutely hilarious, yet only after much time has passed, as these obsessions have owned her and at times myself. One of the first ones I remember is the wearing of her bathing suit. 24/7. And yeah, I’m not supermom because I didn’t try to force it off of her. I rolled with it. It was a sensory thing. She wanted to feel all tucked in. So she wore her bathing suit day after day, under her regular preschool clothes. Her teachers accommodated it, I dearly loved the special needs programs she was in at the local elementary school, they really “got” her, which has been the key to her metamorphosis over the years. The ones that “got her” and the ones that didn’t. But I digress. She wore the bathing suit until she developed a strange blotchy rash all over her body. I took her to the pediatrician and doc said no more bathing suit. Cold turkey on that one. Was not fun.
The next one was a spin on the bathing suit. It was not having her pants feel tight around her waist. The one blip I’ll share in regards to this one is being at Boston Children’s for an ultrasound by the pedicardiologist. I was preggo with number 2 and they were checking for various TSC related heart issues. My brother was in town and he came with me to help with Mary Ellen. When I came out of the appointment, and I asked him how it went entertaining her in the waiting room. He said, “Fine. Anytime she wouldn’t listen to me, I told her I’d make her button her pants if she didn’t.” It had worked. Case in point on this one.
I won’t bore you with a walk through the etiology of these obsessions so I’ll fast forward a bit. There was Thomas the tank engine, who she thought she was, and we had to refer to her as such, sponge bob, monster trucks, the family guy tv show, being heavy, being thin, webkinz, being a famous singer, and finally, thank God, onto learning Spanish and all things of Spain, teaching herself French and all things of France, and now, right wing politics (think karma, Jill)….
Thing is, I don’t know what it’s like to be autistic. Sometimes I get caught up in how her way of navigating life affects me, and it does affect me. She repeats a large repertoire of humorous vignettes and events on a daily basis. The library keeps expanding yet it can get tedious. So sometimes I float. I know the play she puts on for the day, and I know my part. Lately though she’s been metamorphosing and I’m forced out of my disengagement and have to really think. Wowzers. And I forget that she doesn’t always get my tone or my words and often misinterprets, horribly. This afternoon I was explaining to her why she is NOT a menace to her whole family after this direct quote from a text, “I don’t care what people say about me. I’m not afraid to love myself and political affiliations. I’m sorry that I may seem like a menace to the whole family, but I’m staying in this room until this apartment is vacant”….yeah, she needed some coaching after this text. I realize I need to explain things like having an opinion and being opinionated as well as not taking one’s self too seriously, yet also loving one’s self, despite any external perceived flaws. I explain these things to her and she cries. Then she tells me, “mom, that’s so beautiful”, and I realize how much she’s missed and misinterpreted due to her awkward rapper status. It grieves me. I wish I knew, but it’s never too late.
So at Mary Ellen’s last educational program, she made up this little gimmick with one of her other autism spectrum friends called “the awkward rapper” and somehow the humor in this is great to her and the irony and depth of meaning it carries, also not lost on her. There are many times I want to pull my hair out and run screaming into the street after a day of putting her back together after she’s had a mood swing or even a medicine crash. It’s exhausting, as I’m sure many of you know. Until I had support, I remember wanting to almost hurt myself it was so painful, and lash out at her and anyone else who came near because, of course, it wasn’t fair. Now to see her experience the injustice of life on some level, is excruciating. Yet, this is our life, hers and mine and her siblings, her father.
She touches so many with her radiant beams of pure love and joy that she casts on a daily basis when coming in contact with those open to receive. I have a friend that has said to me, “Mary Ellen is just a great big ball of love” and this is so true! My awkward rapper just turned 19 and I keep on affirming her own strength in overcoming what are atypical challenges and to not compare herself to others on a different path in life. I find it interesting that all the obsessions are not who she is but just painted on identities. While intermittently infuriating, if we all can see past the mask in these kids, and let them know it’s safe to give us glimpses of their true selves, all of humanity will be enriched and broadened by the tangled blessings that these autistic children represent. For Mary Ellen personally, I mostly want to convey so much hope and the measure of rewards that have been received by all who have risked getting past the identity to the person that she is beginning to believe she is.