Role of a Parent as a Co-Therapist in Autism Intervention

Introduction

I am Smrithy. On completion of Post Graduation in Mathematics, I started working as a lecturer. After marriage, I shifted to Bangalore with my husband and was enjoying my life as a house wife. We are blessed with two children, Adhithya who is 12 years old and studying in Class VII and Advaith, who is diagnosed with Autism. When my son was diagnosed with Autism, I decided to do a course in Special Education in Autism and now work as a Special Educator to assist other families and children with Autism. I am the Special Educator, Speech Therapist, Occupational Therapist and Sports Instructor, for my son. I created a Blog and a YouTube channel for helping other kids and families, where I upload videos depicting how I teach reading, writing, typing, arts and sports activities like cycling, swimming, roller-skating, badminton, scooter board and basketball. I have already uploaded over a hundred videos on my channel and I ensure that they are done step-by-step, for ease of understanding for the viewer.

Autism

Autism Spectrum Disorder(ASD) and Autism are general terms for a group of complex disorders affecting brain development. These disorders are characterised in varying degrees of difficulties in social interaction, verbal and nonverbal communication and repetitive behaviours. Autism appears to have its roots in the early stages of brain development. However, the most obvious signs and symptoms of autism tend to emerge between 2 and 3 years of age. The term “spectrum “reflects the wide variation in challenges and strengths possessed by each person with autism.

Importance of Early Intervention

Early Diagnosis and early Intervention programs are an important first step for children with autism and those with other developmental concerns. Early intervention services for young children span across the range of 0 to 6 years. Early diagnosis followed by individualised early intervention can provide the best opportunities for realising the child’s full potential.

For example, problems with communication are a big cause of tantrums and other difficult behaviour in children with autism. If children are unable to communicate their needs or understand others, they express themselves or get attention through difficult behaviour. But if they learn to communicate effectively as early as possible, they won’t need to behave like this quite so much.

Early intervention programs should be family centric, well-structured and based on sound evidence. It should focus on developing attention, communication, imitation, language and social skills.

Research Rationale

Recently the American Academy of Paediatrics suggested that parents should play a pivotal role in their child’s intervention. They felt that when parents used daily routines as learning opportunities, it helped the child use his new skills in a variety of everyday situations. Instead of merely observing therapy sessions, parents must work along with the therapists, so that they themselves can become therapists for their child. With guidance from the therapist, parents learn how to help their child at home. In this way parents can modify any everyday activity into an opportunity for communication and essentially provide therapy every day for their child. This type of collaboration between parents and therapists is called “parent implemented intervention”. Study reveals that “parent-implemented autism intervention” works most effectively. A few hours of therapy each week do not result in the kind of developmental gains for children that those achieved by teaching the family intervention strategies do, which encourage them to take advantage of the ‘teachable moments’ they have with their children at home and in the community environment.

Parents-implemented intervention provides a child with the most practical opportunities to learn since he is learning during his everyday life, each and every day and because he is learning new things at home with the people closest to him, learning becomes natural, motivating and fun.

When parents and therapists team up and collaborate this way, it ensures that a child with Autism spectrum disorder learns from the best possible teachers - his parents. Difficulties with language and communication are a key feature in the discussion on autism. The major cause of stress for families dealing with their child who has autism is due to lack of communication skills in him. For the most part, children with autism think in images and not in words especially when they are younger.

Methodology

Advaith was diagnosed with Autism and ADHD at the age of 2.3 years. At that time, he was completely nonverbal and would communicate by pulling my hand towards his desired objects. We started ABA when he was 2.4 years old. His ABA Therapist introduced him to sign language. As I was a co-therapist for him, I also started practising sign language for communication, at home. After one month of ABA, he started communicating for his needs like music, book, carry…. independently. He started vocalising with first sounds while communicating. Thereafter, we started to focus on words for communication. This put immense pressure on Advaith and the result was regression of speech and incessant crying during session time.

After eight months of ABA, Advaith stopped cooperating with his therapist and was continuously crying. Even though they tried different techniques to keep his interest levels up, with reinforcers, it was not helping him. So, we discontinued ABA from that Centre and I started doing ABA at home with the help of a certified ABA therapist. She was giving me a home program and I was working with Advaith under her guidance. But I couldn’t continue it for a long time as Advaith was not cooperating. Around that time, I joined a course with KPAMRC for special education in Autism. I enrolled Advaith into Bubbles Center for Autism and I did my practical sessions during the course at Bubbles. From Bubbles I learnt about structured teaching method and PECS (Picture Exchange Communication System).

I also introduced Structured teaching method and PECS at home with Advaith. I created two picture cards of his favourite food and stuck them in front of my kitchen wall. Within a week, he started using those two cards independently for communicating. Then I introduced other pictures like milk, juice, music etc. one by one. Then I created a PECS file for Advaith. At that time Advaith, was using that file for his communication with different people and at different places.

Then I attended a workshop about ‘avaz’ which is an AAC app for kids with Autism. By then, Advaith could use the iPad for watching his favourite rhymes and doing some educational activities like matching and puzzles. I tried to start with ‘Avaz Lite’ that was a free version for seven days. I customised Avaz with real pictures, that he could relate to easily and showed him how to communicate using that. Advaith was very happy to hear real voices on the iPad while using Avaz. The fact that someone was talking for him, served as motivation. After observing his interest, we decided to buy ‘Avaz India’. After that I customised ‘Avaz India’, the same way as he was doing using PECS. I clicked pictures from his PECS file and added them to Avaz.

In his mind, the communication concept was clear from sign language. At present, he uses Avaz for communicating his food requests (ordering from restaurants also), actions like swimming, horse-riding, skating, scooter ride, cycling, for his favourite rhymes, favourite places to go to, talking about himself including phone number. Now everyone can understand what he is trying to communicate. His anxiety levels reduced to a great extent, because he could express his needs and feelings to everyone. We use Avaz not only for communication but also for teaching number concepts, typing, objectives, prepositions and to build language skills and comprehension. When he experiences a sensory overload, he asks for horse-riding or scooter ride. Then I realised that those two activities help him to calm down. Through Avaz, he is able to wish friends and family members on special occasions and this makes him feel more connected to them.

I was using structured teaching method at home with Advaith. I structured his daily activities with visual schedule with time concepts and created a fully structured environment at home. That really helped to reduce his anxiety level, restlessness and to build independent skills.

Advaith was hyperactive from childhood. When he was 6 years old, I thought of using his high energy level to teach him different sports activities. We taught him cycling, swimming, basketball, badminton and roller-skating at home without any trainer. This helped him to reduce his hyperactivity and improve his attention, focus and concentration. Then I registered him for Special Olympics Bharat. In November 2017, Advaith participated in the Roller Skating competition conducted by Special Olympics Bharat, Karnataka and he won the Silver medal. Advaith won gold medals in roller skating competitions held by Karnataka Disability Department in Dec 2016 and Dec 2017.

Advaith had great difficulties in writing and hence I taught him to type.

I started teaching typing with Clevy keyboard, and now he is independent in using any type of keyboards, including touch screen. Now I am training him for the data entry and other computer skill training programs. Now he can do simple data entry programs independently.

Advaith likes to stim with threads and I thought of converting that obsession into a meaningful activity. I taught him how to make jewellery using thread and beads. We started making bracelets and then necklaces and moved to ear rings. Now he is making, gifting and selling his jewellery. We named it as “Addu’s Little Creations”. The amount which comes in from selling the jewellery is deposited in his bank account. We have created a facebook page “Addu’s Little Creations” and are exhibiting all his products in that page.

· https://www.facebook.com/Addus-Little-Creations-201298383744598/

Findings

· Avaz helped Advaith to improve communication and social skills. It helped him to reduce his anxiety and express his thoughts.

· Structured Teaching Method helped to reduce his restlessness, to make him fully occupied at home and bring in more independence in his daily life skills.

· Sports helped him reduce his hyperactivity and we discovered that Advaith is extremely good at Roller Skating. That brought about lots of appreciation which gave him greater confidence about his skills and he started improving in all areas of learning.

· His obsession with stimming using a thread, helped him to learn a skill, ‘jewellery making’ and he is already earning an income from that.

· Advaith does simple data entry programs and continues with his computer skill training programs that will help him in achieving an important vocational skill.

Conclusion

“Parent-implemented autism intervention” works!!

Recommendations

· Understand ASD. Accept ASD. It is a life-long challenging disorder, but there are ways to minimize the effects and improve the quality of life of not just your child but also yours.

· We, as parents would want to know what our child wants or is feeling rather than name alphabets, sing rhymes or learn numbers. This would help reduce behavioral challenges and improve our bonding with our child.

· Mother is the best therapist and love is the best method for children with special needs. It is very important to take guidance from experienced professionals and parents should follow the same techniques at home. We must remember that communication happens everywhere and not only in a classroom setting. A child goes to therapy centres or school for a maximum of 3 to 5 hours per day and the remaining 7 to 9 hours are spent with parents and caretakers. So, parents and caretakers play a very important role in the development of the child’s communication skills.

· Professionals are trained experts. Take their suggestions, observe how intervention is planned and worked upon. We as parents know our child better. So, encouraging similar strategies at home in the manner that we think will work in a particular scenario, augments what is taught during therapy sessions. Enrolling for therapies cannot succeed without parent professional partnership. Empower yourself by learning how to carry out therapeutic activities at home and co-partner intervention.

The journey with Advaith has only started and we have a long way to go. We already know the road to our destination.

My sincere thanks to all professionals who helped us in this special journey.

Smrithy Rajesh - +91 9343726270

smrithy123@gmail.com

Search This Blog

My Special Journey with Advaith