Monday, January 10, 2011
Reflecting back on my first writing, I thought it would be good to start with some history on "The Face". That gorgeous, double dimpled girl is Alyssa. Alyssa is now 7 years old. She was diagnosed with Autism Spectrum Disorder, ASD, when she was approximately 4. Prior to her diagnosis, Alyssa was described as having “global and significant developmental delays”. One doctor diagnosed her with “Alyssa Syndrome”. Doctors were perplexed by Alyssa. We were told everything from, “she is a mystery” to receiving guesses, which would later be proved wrong during medical testing.
All in all, I really liked “Alyssa Syndrome”. It made her so unique. It kept her from having a devastating label. It made it easier for me to cope. If she had delays, it was fine, as long as, she wasn’t labeled wholly by a word like “autistic”. I believe my daughter has autism, but she is so much more than that. I would challenge people in our society to look at this disability differently. First and foremost, Autism is just one little part of who she is. Our society quickly says, “I know someone who is Autistic”. Does this mean, the person has no qualities, other than, the description under the definition of Autism? Enough said, Alyssa is a beautiful, funny, interesting, inquisitive, curious, loving, friendly person who also has Autism. Fair enough?
Alyssa has the best spirit. I love it when she will come up to me and put my hand on her belly, so I can tickle her. If you look at her as a person, without so much of the label, it’s very interesting to see how much she is EXACTLY like other children her age. This is how she began to shape, and transform, my thinking from her having a disability, to her having abilities. I feel I am very lucky to have had this transformation in thinking. It’s so easy to be impacted so deeply by the label, it stops everything you could do, or be, from happening. The label can be suffocating. It hurts.
The diagnosis came about when a Psychiatrist was invited to the school to assist them with Alyssa's behavior issues. Alyssa had everyone wrapped around her little fingers. She would scream and everyone would jump. This was a very natural reaction, I believe. We did the same thing at home; scream, jump; scream, jump. The more we all responded, the more she screamed (and the more I thought I was losing my mind). The Psychiatrist simply guided us through what was happening and gave us all techniques to put in play, so she would have the opportunity to change this behavior pattern. And, it worked. Whew!! The Psychiatrist then met with my husband and I, to have further discussion. This is when he offered to tell us "his diagnosis" of Alyssa. I confused what he was talking about. I thought he was giving me his evaluation, a continuation of information and how we could work with our daughter at home. WRONG!! He really meant “diagnosis”. As he unfolded the diagnosis to me, I was in shock. I was cool with her having Alyssa Syndrome… I didn’t want this. “What do you mean? Why are you telling me this?”, I was saying to myself. He asked if we were okay. We said, “yes” and went on our way. I remember not knowing if I was going to make it all the way to the parking lot. My feet were one in front of the other, but my legs were turning into spaghetti and my heart began to ache in such a way, I felt like I couldn’t even breathe. We got to our cars, I started driving, and called Sue. As I sobbed, the most of what I remember is Sue asking me, what was upsetting me the most. The answer, it was permanent! Sue knows how much I love my little girl. Sue re-directed me by reminding me, it didn’t matter what the diagnosis was, Alyssa was still my angel. She was right!
Yes, I still had to cry for 5 days, before I allowed myself to pull it together. Then, it was time to start making a difference. I needed to figure out how to help Alyssa. I am not saying to you or anyone, they shouldn’t grieve, but moving forward was very important! Bring on the literature! HA!! There is so much out there. Where to start? The internet, of course!!
That's it for now. I have other responsibilities. Please continue to follow and know, I am incredibly inspired to share this journey. If Alyssa can make the difference for one person, score - that's one in a row!! Have a great day!