Sunday, October 10, 2010

Ayden Camila-Special Need: AIDS by Adriana Sierra

a. How does it feel to be the parent of your child?
Hello my name is Adriana Sierra, my husband Benjamin and I have been married for 12 years.  Shortly after we wed, my husband and I learned that we would never be able to conceive children of our own.  The news was devastating.  After several weeping months, I build enough courage to begin looking into the other options we had.  I contacted several adoption agencies in hopes of being granted the opportunity to become a mother.  One day as I was visiting in the Olive Crest Adoption agency, I came across a flyer from the Children With AIDS Project.  The CWA is an agency whose mission is to place any of the 134,000 children living with HIV and AIDS into foster or adoptive homes.  At that very moment, I felt like adopting a child with AIDS was my calling.  My husband and I began to emotionally, psychologically and financially prepare ourselves for the challenge that would come from having a child who’s infected with AIDS.  After two lengthy and rigorous years the adoption was finally completed.  On September 15, 2000, Benjamin and I became the parents of five month old Ayden Camila.  
No words can explain how rewarding it feels to be a parent.  Ayden is the most wonderful daughter one could have ever asked for.  Hearing Ayden laugh and seeing her smile reminds me everyday that I made the right choice in adopting her.  Shortly after Ayden came into our lives, I decided to quit my job as an elementary school teacher to devote myself entirely to raising my daughter.  In the beginning, things were overwhelming, between the dozens of doctor appointments, countless therapy sessions radical changes had to be made to accommodate to Ayden’s needs.  Being a parent of a child with special needs is challenging and most often you feel helpless.  Knowing that there is nothing in your power that you can do to help your child medically is devastating.  When I adopted Ayden, I decided that I was not going to be a weeping lamenting parent, instead I have metaphorically become my daughters backbone.  Through the years I have been actively participating in my daughter’s education.  Currently, I am the president of her school’s PTA and I am no stranger to my daughter’s elementary classroom, since I volunteer quite frequently.    

b. How is your child developmentally the same or different from other children at the various ages?
Now that Ayden is ten years old; she stands 54 inches tall and weighs 68lbs.  Looking at her exterior Ayden looks like an average fifth grader but unbeknownst too many, she is anything but average.  As a toddler, Ayden was diagnosed with an expressive language impairment.  As a result, Ayden has had to receive speech therapy.  In school, Ayden receives speech services by certified personnel everyday for an hour.  Ayden has had to miss many days of school because of frequent doctor appointments, illnesses (fevers, soars, flu like symptoms and common colds) due to her frequent absences; Ayden has fallen behind in her studies and requires extra academic assistance.  So thus, in comparison to her classmates, Ayden is different and requires specialized attention.  

c.c. What professionals/agencies do you deal with?  What services are available to you and your child?

Our family has become part of the Children Affected by AIDS Foundation.  This nonprofit organization provides several services to children and families that are being affected by AIDS.  Some services include: basic needs, like providing clothing, housing, medical co-pays, medications and emergency childcare.  CAAF also provides psychosocial support, social and recreational support and camp network grants.  With the help of this organization, our family regularly receives therapy and we are apart of several support groups that help plan interactive activities and field trips for children such as Ayden.  Some activities include: making picnics, horseback riding, swimming, kayaking and fishing.  This organization has helped alleviate some of the financial burden my husband and I have encountered, since they provide us with school supplies, medical co-pays and several medications.  We have also been closely working with the Children’s AIDS Fund organization, they have been kind enough to provide us educational resources.  This organization has arranged for Ayden to receive additional academic support through one on one tutoring services she receives three times a week. 
d. How did you find out about the above services?
Through conversations with my doctors and health care providers I learned that there are several organizations that provide different types of aid and support to people and families who are suffering with the disease.  I decided to conduct a thorough web search and found CAAF & CAF, after coming across the organization’s web pages, I immediately contacted them.  I arranged for several meetings with the personnel from both organizations and when I felt comfortable, I introduced them to Ayden. 
e. What financial burden, if any, are you experiencing?
Ayden is currently undergoing HAART treatment.  HAART (highly active antiretroviral therapy) HAART is defined as treatment with at least three active anti-retroviral medications (ARV’s), typically two nucleoside or nucleotide reverse transcriptase inhibitors (NRTI’s) plus a non-nucleoside reverse transcriptase inhibitor (NNRTI) or a protease inhibitor (PI) or another NRTI called abacavir (Ziagen).  This treatment is most often referred as “the triple therapy.”  The average annual price for HAART is between $10,000-$15,000.  So needless to say, that it is very costly and we rely heavily on the assistance we receive from CAAF because otherwise we would not be able to afford the cost of this therapy.     
f. What other information do you want to share?
I just want to express how important it is to teach and practice tolerance within the school community.  I also want to invite parents and the entire school community to become educated on this disease.  There are several non-profit organizations (like the ones mentioned above) that can provide you will good resourceful information on the transmission, the symptoms and answer other questions you may have.  Lastly, I want to share that no transmission of HIV within a school or childcare setting has been reported (kidshealth.org). Please remember that Ayden by no fault of her own contracted this terminal disease and she like any other child deserves a high quality education.

What is AIDS?
AIDS stands for acquired immunodeficiency syndrome, a disease that makes it difficult for the body to fight off infectious diseases. The human immunodeficiency virus known as HIV causes AIDS by infecting and damaging part of the body's defenses against infection its lymphocytes, which are a type of white blood cell in the body's immune (infection-fighting) system that is supposed to fight off invading germs.

Talking With Kids About HIV and AIDS
Talking about HIV and AIDS means talking about sexual behaviors  and it's not always easy for parents to talk about sexual feelings and behavior with their kids. Similarly, it's not always easy for teens to open up or to believe that issues like HIV and AIDS can affect them.  Doctors and counselors suggest that parents become knowledgeable and comfortable discussing sex and other difficult issues early on, even before the teen years. After all, the issues involved understanding the body and sexuality, adopting healthy behaviors, respecting others, and dealing with feelings  are topics that have meaning at all ages (though how parents talk with their kids will vary according to a child's age and ability to understand). Open communication and good listening skills are vital.  Schools can help. Every state requires schools to provide age-appropriate information about HIV/AIDS that has been designed to educate kids about the disease. Studies show that such education makes a tremendous difference in stopping risk-taking behavior by young people.  Parents who are well informed about how to prevent HIV and who talk with their kids regularly about healthy behaviors, feelings, and sexuality play an important part in HIV/AIDS prevention.  Kidshealth.org
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