Day 23: Autism Awareness Blogathon
I know that as a parent, you spend most of your time dealing with the practical aspects of parenting. When your child has autism we do the same thing, but we don’t have the assurance of the future that you do with a neurotypical child. We don’t know what our/their future will look like. So we focus on the day to day and try not to get disappointed with ourselves for dreaming about this mystical, clouded idea of a future hoping it will be full of happy, meaningful independence. Because, seriously, we have NO idea what it will actually look like.
On the weekend I attended a really fantastic conference session presented by Michael McDowell of the Childhood Development Network – one of our local private multi-disciplinary clinics here in Brisbane (Australia). And now I know why this Paediatrician has had his books closed for some time! Here’s the rundown from the session:
Our goalposts as parents need to be on our child’s transition to adult life. If we frame what we do as our children are growing with that pivotal point in mind, then we can effect great change. Most importantly our decisions can be made with this child & family focused outcome in mind rather than what the therapists/teachers/specialists etc. might think, however good their intentions may be.
There are four main areas to consider:
- Mental health and happiness
- Social participation
- Vocation/meaningful daytime activities
- Independence to the greatest degree possible
Using these four categories, look at constructing a plan which focuses on the next 6-12 months but with the bigger goal of transitioning into adulthood with all four areas optimised always in mind.
McDowell suggests developing a ‘team’ drawn from our community. Look to your extended family, work, sport and social groups, teachers, kids in your child’s class and within the broader school. Identify who you might like to include in your child’s team then look at how you might bring them into the team.
Develop a simple profile of your child remembering that you are controlling the message and the information you are sharing about your child. The profile should include the positives – what your child is good at, likes and what is likeable about them; the difficulties – what is unexpected or hard for your child and how they adapt; and the reasons it may be difficult for your family, the challenges you face in caring for your child.
Communication needs to be parent driven, keeping the team informed, bringing them together to share ideas and celebrate successes with your family. The team can be fluid with roles and goals delegated appropriately, but are all committed to working with your family to assist you in achieving the best possible outcomes for your child.
It’s important to keep in mind that we want our children to enjoy being themselves. Their positive self awareness, how they think about and manage themselves as adults, stems from feeling safe and loved within their family and wider community and this in turn builds resilience.
I don’t feel like I’ve really captured the spirit in which this information was delivered. It was actually quite empowering whereas what I’ve written above sounds a bit clunky. I really like the idea of planning with the end goal in mind and I feel like I already have the makings of a ‘team’ – people who love and care about my child. I know I need these people in my life whether I formalise their roles or not. I had to call on quite a few of them just to be able to attend the conference (3 different babysitters on each of the two days!).
One of the most important messages this guy had was to focus on the family as a whole, not just the child. Our children need their families to be strong and happy, not worn out parental wrecks who are angry or divorced and sullen, resentful siblings. So go now, get off the computer and give your partner a warm cuddle and tell them that you love them.