By Kara Haloen
From the time of our daughters’ diagnoses we, like any parents, wanted to start planning for their futures. It’s just that our journey would be different to that of other parents. Driven to make their everyday lives easier, we began by placing our daughters’ names on the much-dreaded multi-year wait lists for autism-related services. We knew that our first goals were applied behaviour analysis (ABA) and intensive behavioural intervention (IBI) therapy to help both of our children achieve and thrive. My husband and I wanted them to have intensive therapy goals so that, in the end, they would have happy, sustainable and independent futures.
About ABA and IBI
ABA is a short-term, non-intensive type of therapy, with an average program taking anywhere between two and six months. It uses an approach that teaches the child skills based on the principles of learning and behaviour. The idea is that what the child learns can be applied to daily life situations at home and at school, and within the community. ABA can also be implemented in school by teachers and staff. It can be continued for ongoing skill development, or focus on just one goal at a time.
The counterpart to ABA is known as IBI. This is a more intense type of therapy, as its name suggests, that’s designed to prepare the child for daily mainstream school. IBI is usually conducted at home or in a private setting, either individually or in a group, for a specified number of hours a week (this can be as much as 40 hours). Sessions are delivered by a trained behaviour therapist who is supervised and overseen by a child psychologist. The therapy looks at “learning to learn” behaviours by using forms of imitation, cooperation and attention. Parents and children can choose from a variety of priority goals:
• Social skills/interpersonal
• Behaviour management/emotional regulation
• Activities of daily living skills
My husband and I knew that reaching each of these goals would involve walking a very long, hard and trying road. From the tiniest achievements to the biggest goals possible, once Teagan and Logan entered ABA and got into their IBI placement, all of their tears, every word of praise and each piece of hard work they accomplished was designed to set them up for later independence and self-reliance.
Extra help and resources
After the girls’ diagnoses, we applied for an infant and development service worker. Each person assigned to our family worked selflessly and tirelessly, and these workers were a part of the girls’ lives until the age of five. They worked closely with our girls to make sure they were meeting their developmental goals and that we, as their parents, were kept up to date on matters regarding education, available workshops, government funding and autism program information. They also helped with transitions into community and school settings, and with the endless lengthy applications and tedious paperwork. Providing emotional support during the most challenging of times (which was pretty much needed every day), they made themselves invaluable. These workers were a part of our family for several years, until the Resources for Exceptional Children and Youth (RFECY) team took over and helped the girls to continue moving in a forward direction. Over time, we realized that we needed a more stable parent support system than we had imagined. So, we also reached out to home-based agencies here within the Durham Region.
Engaging in social interactions is one of the most difficult tasks for kids on the autism spectrum, so the search was on to find a special needs daycare. Teagan and Logan both required a place where they could grow, play, learn and get ready for public schooling. We also started the process of finding social autism and therapeutic programs near our home.
Our second home
Both of our girls received early-age interventions from a wide range of professionals—including a speech and language pathologist, occupational therapist and physiotherapist—through Grandview Children’s Centre in Oshawa, which has become our second home.
Teagan has now completed three years of ABA and is loving her mainstream classroom. Meanwhile, Logan is following her sister’s footsteps and aims to complete her ABA program over the coming years through the new Ontario Autism Program, and is making huge gains.
However, planning and envisioning our daughters’ futures goes well beyond the many blocks of therapy and specialized programs. Enrolling the girls in social activities such as team sports, dancing or swimming allows them to build self-confidence, work together with others, and achieve goals. They are learning to listen to instructions, repeat what they are asked to do and retain directions in their memory, and are confronting and conquering some of their fears.
Together, we are taking the time to further our goals through resources and networking. And, with the help of our social workers, we are beginning to focus on parenting in the pre-teen years and to understand adult autism programming.
Through the ups and our downs of autism with both girls, we have learned that each of our children is in a different place on the spectrum. Teagan is now a huge active social butterfly who loves making new friends. She is extremely chatty and loves dance classes, respite programs and swimming lessons with her sister. She is definitely a go-getter, a leader. She has not allowed her condition to affect her happiness. Logan is always smiling or laughing, but she is a very quiet, shy girl who is a huge bookworm. However, we often catch her chatting away and pretend playing, singing and dancing with a princess dress on.
Teagan and Logan do have some things in common. They both love routine, structure and their iPads, and to travel by plane or car. They have become the best of friends; they lift each other up and are always advocating and looking out for one another. And both sisters also love to spread awareness of autism through their media work, helping to fight for acceptance of all kids everywhere they go. Whatever the future holds for these two happy sisters, they hope to inspire “One autism family at a time.”
You can follow our family journey at autismmodelingsisters.ca.
We have taken many steps to safeguard our girls’ future, and have applied for every type of autism funding we can find (e.g., funding for Autism Ontario camps, Kerry’s Place for respite care and Jumpstart for sports). Most importantly, we have accessed all possible government disability funding (e.g., Special Services at Home, Assistance for Children with Severe Disabilities, Disability Tax Credit for tax purposes and subsidies for daycare) and government bank saving plans (e.g., Registered Retirement Savings Plans, Henson trusts and Registered Education Saving Plans).