When we got Robyn off of the top of the refrigerator in 1989, we knew then we had to seek help. She was our little escape artist. Howdy! I would like to share my condensed story because on April 28, 2009, our baby Robyn will be age 21. WOW! We have raised her and she has made it to young adult.
I can start out by saying "A SENSE OF HUMOR is much needed and I believe it is a gift from God. The first special needs project we were tasked is the appearance of Robyn at birth. Robyn appears to be white in skin color with blonde coarse hair ... Yes, she is An Albino. We are her dark-complexion African American parents who strive to keep her from sunburn. We worried that when Robyn got older, we would have to explain that she is not adopted but rather our natural child. However, THE CHALLENGE arrived when Robyn, at age 2 years, stopped babbling 'mama' and 'dada' and appeared to be deaf. The worry about what explanation we would give Robyn about being light in skin color and different from us went out the window! THE CHALLENGE became communication , comprehension, and appropriate behavior (social) – It is Special Needs in an extraordinary way.
We found that the program Early Childhood Intervention is an excellent start when parents become baffled about what is age-appropriate or what is a little unusual for their child. I would say the best description for living with Robyn is like playing the game of charades 24/7 because she is nonverbal. We had to develop methods for eating and potty training that were far beyond earning a PhD or any type of degree would warrant. We have an older daughter who is seven-years older and was diagnosed with Attention Deficit Disorder and she was for a while emotionally disturbed. She was embarrassed about her sister's inabilities to talk, play, communicate, or socialize. The funny thing about our oldest daughter is she put in an order for her baby sister, per say. One day, my oldest daughter asked me "Mom, can I have a sister?" - My response was that "We would have to ask daddy.” But my oldest daughter's next words were, "Mama, can she be white?" I laughingly told her, "Now, we really have to ask Dad about that because Mom and Dad cannot have a white child." The next Spring when Robyn was born it was a reflection of the fact that God has a good sense of humor.
I share my story because I had to shed a lot of blood, sweat, and tears to get a day care program for Robyn. We started out in the military child care and thought it was a secure environment for me to continue to work, but Robyn's behavior caused me to receive what was felt as a hassle from the day care everyday because they did not know what to do with her or for her. When Robyn's diagnosis was made official at age 3, every professional kept telling us that we needed to go on as normal – if I am a working parent then I was to continue working. This was not possible with autism being so new. Twenty years ago, the Mental Health and Mental Retardation agencies did not have the knowledge of what to do and only offered one hour of Nurse Respite rather than the 8 hours of day care which is what we needed to allow me to be "normal" and go to work. After the 20th phone call within 2 weeks from the day care about Robyn’s behavior and the fear she would hurt some one or herself, my husband and I discussed that it is okay for me to resign and become an at-home mom.
Of course, financially, I really needed to work, but the stress and strain as well as the progressiveness of the Autism became more dominant in our lives. Before I resigned, we planned for two months of my paycheck to not be used so that it would not become undue financial hardship. We did not incur too much debt at that time so we were able to bank my little paycheck. I then gave my two-week notice to my boss of six years. They gave me a great farewell party and had been my support system from the beginning of the Albinism to the onset of the Autism. I then began my crusade for day care for children with special needs. I was still able to make some financial contribution to our household because I became an American Red Cross Caseworker. It was a part-time job on the phone at home relaying messages to our service members overseas regarding family issues. This job also coordinated their emergency leave and need. I enjoyed baking cookies for my oldest daughter when she came home from school so there was a disappointment for resigning from my job but the blessing in disguise was I was there for my children.
Public schools became involved and integrated parents with their special needs children, but my Robyn was a bird of a different feather. It took education and the moving away from the myth that Autism develops from children whose moms are "cold" or considered "the refrigerator mom". Finally, more research developed and Autism is seen as biological/neurological and not psychological as it alluded to in the past. Two weeks after I resigned, Early Childhood Prevention arranged for half-day head start for Robyn. I found employment with a State Agency and resumed my occupation. It was a brief stay-at-home mom adventure, but it was worth it because there was a great need for services in the area of care for children like Robyn. Robyn will graduate from High School in 2010 at age 21. We have already noticed that it seems that now that the school systems and State agencies have become more aware of Autism the younger generation of them has a better chance, but there are not enough programs for when they become adults.
My husband and I did not follow the doctor's advice 20 years ago when he recommended "You might as well put her in an institution and get on with your life. 99% of parents waste their lives trying to raise this type of child and then when the child turns 10, they end up having to do it then." I merely told the doctor at that time, "You know the 1% that is left? We are banking on that." My story is that we are still standing! So now we have to pave another way to ensure the very special vulnerable citizens whom we love and are responsible for will receive the opportunity to express themselves whether it is verbal or nonverbal to live without incident or abuse. Yes, we can prove them wrong. Autism is okay because their contribution is to our social, spiritual, and mental consciousness. In order for us to make a great nation, the attitudes about special needs citizens must be adjusted; this must become true for all to communicate and to accept our diversity.