December 02, 2013
When Aareck was born, he had some medical complications. He developed pulmonary hypertension, along with pneumonia. He was hospitalized in the NICU for ten days. For seven of those days, he was sedated and hypersensitive to touch, lights, and sounds. His face was covered from the lights and he was in a very quiet area so that his heart rate would not go above normal. But once he was released from the hospital, he was a very easygoing baby. He liked to be held and was very alert.
Initially, Aareck did not display any red flags for autism. He responded to his name, pointed to things, played peek-a boo, and imitated, so I never suspected autism. What I noticed was his speech and language delay; he was not really trying to say words. He was about 18 months old when I took him to Regional Center to get a full evaluation. He was diagnosed with global developmental delays. He was delayed in all areas: cognitive, fine motor, gross motor, language, social skills, and adaptability/self-help skills. He began to receive occupational therapy, speech therapy, and was in development program three days per week, where there was a speech and language therapist, occupational therapist, educational specialist, and a developmental psychologist who incorporated interventions and developed appropriate curriculum. There, Aareck was taught sign language and that was his first method of communication. Once he started signing and was more comfortable, he began to actually speak the words.
Once he turned 3, the nightmare began. He was transferred from Regional Center services to school district services, and since he was only diagnosed with global developmental delays, he only qualified for speech and language services and OT consultation. He attended a Head Start preschool, where the teachers began to notice his difficulty in participating in group activities, playing with others, and reluctance to nap. The speech therapist also noted his echolalia. It took a whole school year for the district to agree to a re-assessment. Aareck was 3 years and 11 months old when he was identified with autism.
I took him to his pediatrician, who wouldn’t confirm or deny the diagnosis, but referred me to a neurologist. An MRI was attempted, but Aareck wouldn’t cooperate. He wasn’t really hyperactive, but he also didn’t display aggressive behavior. Since he didn’t have those behaviors, the neurologist didn’t prescribe any medication, and I was basically redirected to the school district for services.
Once Aareck began kindergarten, he was placed in a “autism classroom” -- a special day class where most of the kids had autism. Once he began 1st grade, I insisted he be mainstreamed in a general education classroom. It wasn’t easy, but the school district finally agreed. He began to mainstream during read-aloud, then it was increased to read-aloud and math. He did pretty well. He was able to tolerate the transitions, had some “friends,” and even participated in class.
In 2nd grade, it was a whole other story. He began throwing tantrums when going to school. He would open the car door while it was moving, and would scream, kick, and hit. I knew something was going on. He began refusing to go to his mainstreaming class, and the school refused to provide him with a 1:1 aide.
I started reading more on autism, including the options and interventions that were available, and became more familiar with parents’ rights. At the same time, I was doing my second masters degree in school psychology, so I had a better understanding of how school districts navigate their system, and I became more aware of Aareck’s deficits. He was still very delayed in speech. He couldn’t produce a full sentence and his intelligibility was not clear. He had no friends, spent his time by himself, and didn’t know how to play with others or with other kids. He had many sensory issues as well. He walked in circles, jumped, tiptoed, hand-flapped, covered his ears for any loud noise, spaced out a lot, had no spatial awareness, and didn’t like certain clothing. He was also picky with his food, and would stim on videos, video games, and trains. Aareck spun coins, laughed for no reason, had echolalia, and would not even acknowledge other people. He had no imaginary play and despite his age, he would only do parallel play with other kids.
At this point, I hired an advocate to get him proper services at his school. During my research, I encountered TACA’s website and began to attend their law seminars, workshops, and presentations in Orange County. I was able to get a TACA scholarship to begin biomedical treatments. I took Aareck with a DAN (now MAPS) doctor in my area. I found out that he had a lot of yeast and was sensitive to wheat and other food items, so I put him on a gluten-free diet for about four years. We gave him the vitamin B shots for about two years sporadically, and he was treated for yeast, which made a huge difference. The day following each vitamin B shot, he was more talkative. After the yeast was treated, he was less constipated and didn’t crave sugary food as much. Some behaviors also began to diminish, including the echolalia, spinning things, walking in circles, and hand-flapping. Aareck was also becoming more aware.
Once he reached 3rd grade, I noticed that Aareck’s interactions were very different at school were very different than those at home. At home, he was more independent, more engaged, and more talkative than he was at school. I wasn’t pleased with Aareck continuing in a special day class for kids with autism. We were not fortunate with his services and he was not properly served at school. Throughout his elementary years, he went to four different schools. I requested that he repeat 3rd grade in a general education classroom with RSP support with his aide. The district agreed and thanks to that, he improved so much! He became more independent, more aware of his environment, and began to actually play with other kids. Over the last three years, some friends have come to his birthday party, and he has been invited to birthday parties, too. During 5th grade, he advocated to not have an aide anymore so we completely removed the aide. He is now able to function in a regular classroom and do his work.
Right now, Aareck is in 6th grade, which is still elementary level in our school district. He has RSP support, speech, OT, and psychological services to do social skills group. He also has an iPad for writing strategies. Academically, he is doing well (average) in math. However, Language Arts is still difficult for him. He is considered below average because he struggles in putting his thoughts on paper and organizing it, plus reading comprehension is still a struggle for him. Socially, he has been able to make some friends, he says hi to others, and other kids acknowledge him and seek him out. He participates in most of the social activities in the classroom.
I do not consider Aareck to be “recovered” from autism, but I do see that he has been able to cope with some of the deficits of autism. As he continues to grow, I have discovered there are still areas that will challenge him, so he will have to learn how to cope. Since he does not do well in “therapeutic settings,” and because I want him to be as close as possible to a “typical” kid, I have enrolled him extracurricular activities such as soccer, basketball, baseball, swimming, gymnastics, karate, Capoeira, and Polynesian dance. Currently, he does karate, jiu-jitsu, swimming, plays the clarinet and does Polynesian dance. These activities have helped him a lot in different areas. He has been able to do presentations, competitions, and public performances.
Aareck has also previously participated in social skills group and currently we are doing RDI. I think so far RDI is the one service that has helped him and me the most, because it really addresses his individual needs. Overall, he has grown so much and made such a great progress. I believe it has been a combination of interventions that has helped him overcome some of the challenges that come with autism.