I went through the questionnaire three times. The first time, I answered each question with instinct, putting down the first answer that came to my head. Then I went back through each question and thought about the answers for quite some time, trying to come up with as many examples as I could for the behavior in question and asking myself if that was the truest possible picture of my daughter. Then Steve and I went through the answers together, concluding that the responses were accurate. And then we cried.
We have always known that the possibility of Ainsley being somewhere on the autism spectrum was not only possible but highly likely. It has been easier to keep hoping she has an exuberant personality than face the reality that she is adept at masking hyperactivity as a joyful outlook on life. It has become clearer over the last few months that she is plagued by tremendous anxiety and behaviors she cannot control. She needs help.
Over the next couple of weeks we will be seeking no less than two additional opinions about her condition. I am not eager to medicate her at this time, because she will not be entering kindergarten until next year. If I can provide her with appropriate play therapy to introduce her to coping skills, then maybe we can delay medication until it is necessary to get her though the long school day. With Ian, there really was no other option but to treat his ADHD with medication early. There were so many co-morbidities that could not be addressed with ADHD in the way. Ainsley does not have those factors to contend with, thank goodness.
Friends have been asking lately how I manage to deal with all of this. I suppose part of me stays numb all the time - the part that has to make difficult decisions and keep it together so our life can move along as smoothly as possible. The blinders are up all the time, sheltering that part of my brain from any emotion that can interfere with rational thought processes.
Another part of me feels just enough stress to keep me constantly alert to changes in the kids' behavior. It's that part of my gut that can be fooled into believing things are o.k. by just the right amount of chocolate or a second glass of wine. I have to worry a little so I'll watch Ian and Ainsley closely. Tiny changes are often cause for celebration. Every little thing that causes us to rejoice keeps us optimistic about the future. Some alterations are cause for concern; I have to be on guard for those as well, but not so much that I dwell on what might be rather than what is.
The part of me that aches terribly right now is my heart, and I don't think it is because the Crestor I take each morning is ineffective. Another dream has died for me - the dream I have had for so long that at least one of my children would experience a normal life. A life without the complications of autism. A life without medication. A life without therapy. My daughter will have insecurities that her peers do not have. She will face additional physical and social challenges they do not face. Her reality will be skewed by neurological abnormality. Yet, to her credit, the strength of her personality will be the force that keeps her moving forward. She will have an older brother who understands her better than anyone else. And she will have parents who love her so deeply they will fight for whatever it takes to make her whole.
I don't know how I do this every day. Right now, I am not doing it very well, but this too shall pass. The hardest part for me has always been getting through the initial acceptance of a diagnosis. I'll be pissed as hell for a while. That's just the way I am. But eventually, Ainsley's unending joy and beautiful smile are going to heal my soul so that I can help her. It's the symbiosis that makes our family work. I guess that's the answer to the question.
1 comment:
It sounds like you have your hands full there - but you seem to be dealing remarkably well. I teach kids on the autism spectrum, but I can't imagine what parents go through, it's a whole different world. Good luck with both of your children, but I think you will all do fine. :)
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