Up until now, I haven’t mentioned Beany much. I wanted to keep this blog focused more on how autism plays out in our family journey and I wasn’t entirely sure where Beany fit in….until now. We’ve recognized rigid behavior in Beany for quite some time. Over the last 6 months or so, our concerns grew to the point where we could no longer dismiss her outbursts as “head strong” or “willful”. So, almost a year to the date of Blue Boy’s assessment, we had Beany evaluated. Same clinic, same doctor. Deja Vu. We were much less afraid this time but also much less sure of the likely outcome. We expected the doctor to identify characteristics of the broader autistic phenotype, but not enough of them to result in a clinical diagnosis of autism. We figured this was our segue to services that could help with her rigidity, anxiety, and difficulty regulating her emotions.
She was a trooper during the assessments – one for autism and one to look at her language/cognitive abilities along with other measures of early learning. She tried SO hard and you could visibly see her confidence shaken when she couldn’t answer a question. The way these tests work is to keep asking questions until a certain number in a row are wrong. As such, she had to “fail” and this was very, very hard on her. At some points she just gave up answering out of fear of getting it wrong. It broke my heart to watch her struggle. After all the assessments were done we still did not know what the results would show.
Two weeks later we got the news and felt gut-punched. Beany would be one of the first kids diagnosed with an Autism Spectrum Disorder under the new DSM-5 criteria. Our meeting was on a Friday, the new criteria went public the following Monday. We left the office that day in shock and disbelief. We had been here before, but this felt so different because we really weren’t expecting it this time. The assessments confirmed what we did already know about Beany…she is quite smart; her language abilities are equivalent to a 4 – 4.5 year old. She is likely gifted in some areas while experiencing developmental delays in other areas….she is twice exceptional.
Mommy looked at me over dinner the other night and lamented “Well, you sure hitched onto the wrong wagon”. I have never thought that for one second. I told her that I had hitched onto a wagon that was never easy but always worth the extra effort. Before Blue Boy and Beany were born I actively wished for “average” kids, I didn’t want outliers. I figured the most comfortable (safest? easiest?) place for them would be right smack in the middle of the bell curve. Oh, how boring that would have been. In retrospect, I am truly happy that wish did not come true – I have two very special, very exceptional kids that I couldn’t love more. Life is not going to be easy for any of us but I bet it will be quite a ride! Welcome to the header pic, Beany!