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Before
My third child was born February 26, 2003 with no complications. He was a beautiful baby boy who was quiet, calm and slept through the night almost immediately. Hasib was content for hours with baby mobiles, television shows, and favorite toys. As he approached his first year of life, all physical milestones were met and as long as he has his milk and blanket, Hasib seemed happy. Busy with two other demanding children, I failed to notice the lack of emerging language, eye contact, and shared enjoyment.
My Mom used to come visit every couple of months. She would make comments that he didn’t seem to remember her of care that myself and the other children were around. Then other people asked if he was talking yet and wondered aloud about his strange behavior. I made all kinds of excuses for my little angel, my easy baby who needed so little and seemed so contend. But in the back of my mind, I was worried and thought he might be deaf.
Hasib began receiving early intervention services from a local agency at 26 months of age. He had speech therapy and occupational therapy because he had more than 25% delays in language and motor skills. He still did not call me “mama” or say “bye” to people despite this intervention and I became continuously worried. He made some progress that year. As long as the intervention team brought something Hasib was interested in he would sit with them or they would follow him around the house in his pattern of wandering. I was perplexed by his behavior.
His siblings begged to play with the therapists and yet Hasib needed enormous prompting to even notice them. By this time, he had begun to have rituals around the house that could not be broken without grave consequences in the form of extreme tantrums. He also grunted when he wanted something and dragged me around like a tool to get things for him, but still did not call my name or smile lovingly into my eyes as my other children did. Finally, when Hasib was 32 months old, I took him to a new pediatrician who recommended we go to Albuquerque for an evaluation at the University of New Mexico Center for Developmental Disabilities.
Durring.
In college I worked with adults with developmental disabilities including low-functioning autism. That experience was the extent of my knowledge about autism until February 2, 2006 when Hasib was diagnosed with Autism Spectrum Disorder (ASD). It was like a death sentence for me at the time based on the experience I had in the past. I envisioned a life time of screaming, aggression, and collecting trash (his favorite self-stimulatory behavior at the time). I also experienced great fear as to what would happen if I could no longer care for him one day
That fear really provoked me. Would I simply accept this lifelong diagnosis and take the professional advice of accepting his behavior as part of the autism and “learn to live with it”? Instead, I decided I would become more knowledgeable about treatments and try my best to help Hasib get better. We started special diets, supplements, and I pieced together and started implementing the best engagement program I could devise. I hired an autism therapist who had worked with multiple kids doing a variety of therapy. Together we threw away Hasib’s trash and tried to engage him all the time. We used flash cards and toys to teach him everything we could think of and Hasib made decent progress. But it was chaos and I was drowning in it, my entire family suffering because every waking moment was devoted to tweaking this program that came from multiple books and advise from new friends who had been through the experience.
My Father, a retired MD, came to visit in December 2006. Hasib was in a destructive phase at this point, pouring out salt and detergent containers, screaming and ripping things if I wouldn’t put Blue’s Clues on TV. After a couple days, he sat me down and said that if I kept this pace without more direction, he was seriously worried about my health and that of my family. I was obsessed with engaging Hasib all the time and the hope that he could come out of the autism. Hasib was learning, but his behaviors were still a nightmare and I needed help.
Consultants from Autism and Aspersers Consulting (AACT Now) first came to my house in January 2007 to evaluate Hasib’s current levels and advise me about a full Applied Behavior Analysis (ABA) program. Impressed with the statistics on positive outcomes with a rigorous program, I hired three more college students and scheduled James Malan, the consultant to come for training the initial workshop was an intense 16 hours divided over a few days. James spoke to Hasib’s team about autism, ABA, and AACT Now’s integrated approach to treatment. The program James Malan introduced that day was designed specifically for Hasib and his deficits, which were many at the time. The program included at least 40 hours a week of interactive play (Hasib still had not learned how to play appropriately with toys or people), ABA programs, and play with siblings and peers. The progress was instantly noticeable and certainly remarkable in that I had already been working so hard.
The Increased 1:1 therapy hours helped Hasib to make faster progress. After we started with AACT Now, he slowly began to play with his brother and sister, have fewer tantrums with the behavior modification intervention, and talk more in general. With the direction of our consultant, I also continued to do therapy with Hasib and our relationship grew tremendously that year as my son came back to me from autism. James returned for monthly training and program updates. We also communicated regularly through e-mail and phone depending on how Hasib responded to programs and behavior plan. After a few months, I noticed that family and friends often made comments that he appeared more “normal” and was more talkative interested in people. We continued this hard work as a team step-by-step and the results seemed miraculous.
After.
In March 2008 the same organization that gave Hasib the autism diagnosis reevaluated him and took it away! He no longer met the criteria for Autism Spectrum Disorder. Through all those hours of therapy, we pulled Hasib far enough out of autism that he appears indistinguishable in that regard. This fall, Hasib started regular mainstream kindergarten with no aid or classroom support. He does receive 30 minutes a week speech therapy for expressive language, not uncommon among typical children. I am thrilled to report that Hasib completed Kindergarten with only minor issues that were easily resolved. As he enters first grade, I no longer feel the need to share his past with the new teacher or parents of peers as he can perform as well as the other children and does not require classroom modification.
Is Hasib cured of autism? I'm not sure. Does he have friends? Definitely. Can he learn and communicate? Yes. He can attend regular school, go to birthday parties, read to me and tell me that he loves me. I’m sure that Hasib will always be a little quirky and see the world a little differently, but thanks to AACT Now and the teams amazing work, he is no longer stuck in autism.
Sarah Millard- (Note: Names are fictious to protect the families identity)
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