A STORY OF STRUGGLE AND TIRELESS LOVE

"A STORY OF STRUGGLE AND TIRELESS LOVE"
by Glory Orta

My son is a 14 year old handsome boy.  He has high functioning autism and his special skill is drawing mostly Japanese cartoons (Pokemon, Hamtoro, etc.). After 14 years of struggling against a cold and apathetic public education system, and for new treatments to improve his quality of life, I find myself back at square one.  I realize my struggle and my search as many other parents is hardly over, but the love I feel for my son is what drives me to find and utilize each opportunity as it presents itself that gives him a fair chance at a "normal" adult life to the best of his abilities.  I want for my son the same as every parent wants for theirs.  Wanting my son to become independent, to lead a happy life, and to be a functional part of our society are not unrealistic selfish goals.

 How did you feel when your child was first diagnosed?

My son was born prematurely, in my seventh month of gestation.  He had no complications after birth.  He was born a healthy baby.  Then I took him to the Pediatrician and he was given a series of shots (chicken pox included) the same day.  After this, he ran 104 degree fever for the next 5 to 7 days. It was awful. What followed were several years of chronic ear infections which were treated with antibiotic after antibiotic with no results.  I asked the pediatrician to put tubes in his ears but he refused stating he believed tubes would be more harmful to my son.

When I moved to Jacksonville, Florida, I learned that my son was deaf and that his left eardrum was damaged.  Around 3 years of age, the ear infections subsided (he occasionally still gets them).  But by then, he had severe speech and language delays and could only say "Mom".  Often, he would drag me by the shirt in front of the refrigerator, point at it and say "ah, ah, ah".  That's how I knew he was hungry.  He couldn't say milk, or juice or hungry.  I remember crying and telling my mother, I wish he could tell me "I hate you" or something, anything that would express what he was thinking, what he wanted, if he was happy or sad, etc.

When my son was evaluated by the public school system in Jacksonville, Florida, my son was around four years old.  I was told he was retarded.  He couldn't talk, had temper tantrums, tripped on everything around him, could not hold a pencil correctly and had frequent staring spells.  Many times he seemed like he was ignoring me.  I would touch him, fan my hands in front of his face with no response.  I didn't seem to be able to get past his blank glossy glare.

I took him to a neurologist who also stated he was epileptic. I was devastated, I went through a period of extreme sadness to rage, and got severely depressed.  I don't recall a single night during the following 6 month period when I didn't cry myself asleep.

The public school placed him in a Mentally Educable Handicapped class (EMH) with children with severe retardation and Down Syndrome. Finally, toward the end of the second semester, his classroom teacher approached me and told me that she noticed some autistic-like behavior in my son.  She said she didn't think my son belonged in that group.  She handed me a check-off list with autistic behaviors and most of them my son was exhibiting.  This I submitted to the schools which began the process of re-testing him to get an appropriate diagnosis.

I got no support from the child's father who basically walked out of his life and seems to have forgotten he has a son.  Initially I struggled with my parents as this was difficult to accept, especially for my father.  But they have given us plenty of emotional support.

Later I got pregnant and the therapist recommended that I place him in a "charter" hospital where he would be thoroughly examined and diagnosed and an appropriate treatment and recommendations would be made.  Sure enough, he was there as an out-patient for 9 weeks and I finally knew what was wrong with my son. During that time, the psychiatrist recommended that I attend parenting classes every week in the afternoons which proved VERY HELPFUL. I learned why my son had tantrums, how to deal with him, I learned a rewarding system with positive reinforcement, and how to provide consistent discipline to aid his progress at home.  I was strongly encouraged to ask for the teacher's cooperation at school to use the same reinforcements at school as he had problems with transition and transferring skills from one environment to another.

While he was placed in different schools we encountered all kinds of obstacles. Principals who lied about closing their schools so we would request a transfer elsewhere.  A speech pathologist told me "you better get used to this because this is the best he will ever do.  He will never amount to anything." At the time, my son hardly spoke a few words.  When I requested a copy of this pathologist's log (as the classroom teacher told me she never picked my son up for speech and language), I saw check marks placed arbitrarily on her log, then made a copy of it and handed it to me.

At another school, I saw my son tied down to a chair while the teacher yelled at him in front of the teacher’s assistant and the other classmates. The school, of course, never did anything.  At the last school my son came home bruised almost every day.  I would come to school unannounced and saw that teacher physically restraining another student while she had quite a hard grip on his arms.  After my unexpected visits, the principal implemented a system where all the doors, except the main door that went through the main office were locked and everyone had walkie-talkies and I heard many times teachers paging the classmates and warning them:

"Mrs.____ is on her way there now."

What type of services do you receive?

After an eight-year due process, that led nowhere, I decided to pull him out of the public schools to private schools.  But the only good thing about this is the compassionate care of his current teacher.  The downfall, he is not getting any services at all and he seems to be stuck educationally-wise for the past three years, another dead end.  This forced me to look for alternatives and I found a homeschooling program which works for him.  It is with "School of Tomorrow." Their headquarters are in Texas. This is a Christian-based curriculum that gives him the opportunity to obtain a regular education diploma instead of a special education diploma. With this system my son goes at his own pace and he is able to learn.  It requires no teaching techniques (I'm just a single parent with no special skills). The books do it all.  I enrolled my daughter in this program also and she is doing wonderfully. Graduation takes place in Texas when they finish their high school requirements. This represents a great opportunity at a "normal" life for my son within his capabilities as there is no age limit to complete High School. This program is coupled with other activities such as YMCA (for socialization and sports for motor skills) to further enrich his experience.

What is the hardest part of being a member of the autism community?

I think is having to struggle in every aspect autism touches whether it’s socialization, economic, education, medical, diet, etc.  In my case, I ended up reorganizing my entire life, went through 2 divorces as they couldn't cope with the daily issues.  I also learned that having a bright red stove range was very interesting for my son as he put his chin and hands on it and as he watched his skin shrivel while it burned away, he never uttered a single sound.  It was like he felt nothing.  I ended up cooking, to this day, at 3:00 a.m. to keep this from happening again.  Dealing with his sensory issues has been particularly challenging as his sibling is very active and hyper.  He can't handle certain sounds and it just drives him nuts the same as the flushing of public restrooms.  The poor thing spends a great deal of his time covering his ears from these sounds that seem to hurt him.  His lack of sense of dangers has always been scary to me.  Especially when he was younger, he used to come up to any stranger (male or female) and hugged them without even knowing them!  Dealing with inappropriate behaviors like eating without control and vomiting on the table of public restaurants or when he had to urinate, he would pull down his pants in public parking lots and just go without any warning.

It is also hard to entrust your most precious thing, your child, to school teachers and care givers, and when you come back to them to find them tied down to chairs like animals, being yelled at, being dragged by the arms or legs in front of other peers, to find them with bruises on his arms from excessive use of force from the grip of an unskilled teacher, to see the left side of his face so swollen from the slap of a bus driver that could not understand his tantrum was due to another student's bite mark on his calf. It is hard losing your job over the stress of your child being abused, over the calls back and forth to/from school due to behavior issues and the teachers inability to appropriately handle the child because they are not certified to deal with this kind of child.  It is hard losing a husband that does not understand the issues of an autistic child, or the economical strains that helping this child entails, that doesn't support you when you're feeling down.  It is hard being a single parent, with two children one with autism and the other with ADHD, and trying to give them the best quality of life possible even when you can't.

But the hardest of all is keeping your chin up and a happy face when the sleepless nights come, when a stranger in a store is unkind to your child, when everything you do doesn't seem to work, when no one seems to care about this 14-year-old’s pain, when you have no support, when I see my child and wonder what will become of him a few years from now or when my child sees his sibling with her father and he asks for his and I have to answer the job keeps his father away. Just this week my son asked me why don't I have a husband like my brothers.  I told him that I had a choice, being a woman or being a mother. As I kissed him I said "I LOVE BEING YOUR MOTHER".

http://www.nationalautismassociation.org/article3.php