My name is Olga L. Guerra and I am a parent of an adult child who has cerebral palsy. I am a very involved parent and have been advocating for Araceli since she was diagnosed at the age of six months.
Araceli was born “normal,” but as she grew she was not meeting developmental milestones. Her pediatrician suggested we see a neurologist, so we did. Dr. Bohan diagnosed Araceli with microcephaly, but he explained that he was going to label her with CP so she could access more resources. This was Greek to me but I agreed. Little did I know that having the CP label was a good thing. As she grew, she was also diagnosed with mental retardation, speech impairment, an orthopedic impairment and a physical impairment.
As a first-time mom, it was very difficult for me to be told that the child I thought I was going to have, I was no longer going to have. I felt all the emotions that we all go through when there is a great sense of loss. But, I had to pick up the pieces and move forward because my daughter needed her mommy and, gosh darn it, she was going to have her mommy!
Thus my quest began to ensure that she would receive any and all services she needed to be successful. This also meant making sure she had devices and equipment that would assist her in being the best that she can be.
I did not think Araceli would ever walk but she had other ideas. A few years ago, she just got up and walked from one room to another. This, of course, comes because of therapy, a gait trainer, leg braces and endless doctor appointments. Araceli is non-verbal, but she does have lots of communication so I was able to get her a DynaVax MightyMo through the Specialized Telecommunications Assistance Program (STAP) in Texas. This is an augmentative communication device which allows Araceli to convey her desires. For example, when Araceli wants French fries, she can press the corresponding picture and it says, “French fries.”
She has a Tandem trike from Freedom Concepts thanks to The Heart of Variety organization. She has gone to Disney World courtesy of Make a Wish. I could go on and on but, bottom line, there are many resources, services and equipment that will help our children with challenges get that much closer to being “normal.” I tell parents all the time that all they have to do is ask. The worst thing that could happen is that the answer will be “no” and you are no worse off than when you started. What if the answer is “yes?”
I believe in allowing all children with disabilities to be the decision makers as to what they can or can‘t do. Granted, Araceli may not become a rocket scientist, but who I am I to put any limitations on her abilities?
Part of my job as her mother is to ensure that ALL doors will always be open for her. Araceli will be the only one who will decide if she can or can’t do anything.
