Autism Hasn’t Beaten Us…
As you all know my Little Poptart ~ Kalya was diagnosed with Autism. It was on Nov 17, 2007. It still amazes me that I remember that date so exact yet I can’t remember what the hell I did last week. Anyway… we, like so many others in New Jersey, were referred by her amazing pediatrician Dr. Mabagos to Early Intervention. At that time Kayla was only saying DaDa and Dr. J (as Kayla calls him) was concerned. We gave it one extra month to see if she would come around, because naturally I blamed her “not speaking thing” on myself.
Finally, we called Early Intervention and they came out to do an initial evaluation. I still remember trying so hard not to defend her abilities, or cry as they sat there with her on the floor getting her to do different tasks. ”They are so mean, they aren’t giving her long enough to try, they give her the toy and then they rip it away.,” I said to my husband. He tried to console me, as he told me they aren’t being mean, they are trying to do their job. When it was all done they did recommend us for speech and occupational therapy services through them and that we should also contact Children’s Specialized Hospital for an Autism Evaluation. She was showing some autistic tendencies, such as lining up things, lack of attention, and no eye contact.
(insert mouth drop followed by bad mouthing them after they left)
I waited a day to calm down and then I called. I did a phone screening with a woman from Children’s Specialized. I advised her everything Early Intervention had said, while also defending my daughter’s tendencies. She finally set us up with a prescreening evaluation at the hospital. Kayla sat with another woman who did the same kind of testing Early Intervention did with giving simple commands with toys to see if she would follow the directions, or show any interest in them. She almost passed us through as a “normal” 2 year old, but out of no where I spoke up regarding some of her behaviors.
Behaviors now that I can’t even really remember. Most of the early days are plagued with feelings of utter disappointment in myself that I wasn’t a good enough mother, not doing enough for her, not affectionate enough, didn’t play enough with her, etc. I had no idea what I was doing. This was my first child, and I felt very much alone, angry and exhausted. We now realize I should have been seen for post partum depression.
We live and learn.
Because of my concerns, the Children’s Specialized hospital counselor decided to send us on for the official team evaluation. There we met with several therapists that studied Kayla for hours, asked us a gazillion questions, and then came back in to meet with us. With a mild upbeat manner, the team coordinator advised us…
“We are going to go ahead and diagnois her with Autism Spectrum Disorder.”
I thought my heart was going to jump out of my chest or that I was having a heart attack. The tears were right there, along with a massive lump in my throat. I wasn’t going to be able to hold back anymore, and at the moment I opened my mouth to ask my first question the tears began falling. At that time all I knew of Autism, as with so many other parents, is of the child sitting in the corner banging their head against a wall. The therapist advised that those are the most extreme cases. I was very lucky, they said Kayla is very low spectrum and they were going to set us up with occupational therapy and speech. I took the rest of that day to process, and cry. Then I was on the phone the very next day making appointments. I, to everyones surprise, had her in the very next week. We were blessed with Ms. Elke and Ms. Patty at Children’s Specialized in Toms River, who not only helped teach Kayla, but also was there for me as well. They listened to me, they talked to me and they taught me what I needed to know so that I could carry over the therapy at home, which would make a great impact on beating this. In addition the sessions at Children’s Specialized, she still had the Early Intervention coming into the house until she turned 3 and was then transferred to a special preschool program at our public school. There we were blessed with Mrs. Kasper who was the sweetest thing ever. Her and Kayla made such a connection and she was able to teach her so much. Kayla says she wants to be a teacher like Mrs. Kasper when she grows up.
I see now why the team coordinator at Children’s Specialized was not sad by giving us the diagnosis. Because of that diagnosis we were able to get all the right kind of help and so much of it. Kayla has come so very far from where she was. She is always laughing, playing, singing, dancing, smiling, and, I am pleased to say is now more than making up for her delayed speech in the past. She is a total social butterfly who is currently transitioning into kindergarden, is reading at a 3rd grade level and loves helping me cook and keep daddy and our four cats in line.
Thank you so very much to all of Kayla’s teachers and therapists as well as to ALL of the men and women who are out there making it their life mission to help in changing the lives of our children and ourselves so that Autism won’t beat us.
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