Monthly Archives: April 2015

The Gift of Feeling Incompetent

Do you ever feel totally incompetent and powerless in the midst of an interaction with a child with autism?

Good.

It is precisely the willingness to be ‘naked’ (figuratively speaking, of course) and to risk showing others that we don’t have all the answers that is a sign that we are still open to authentic human experiences – still connected and very much open to growth.

Don’t get me wrong: feeling vulnerable can really suck – yep, I think that’s the best word to describe it. Self -doubt, uncertainty and a lack of answers can be downright miserable. But, the opposite – to be guarded, to offer cookie cutter expertise and self -righteousness responses are “suits of armor” that are far more destructive to relationships and progress. Egos tell us that we should be in control; we should know what to do – we should not be weak. Egos don’t know how to love anyone but themselves.Avoid Vulnerability

Acknowledging our vulnerability allows us to show up and be truly present without all the answers. It allows us to be brave. One life giving itself to another life with no guarantees- no promise of success, no certainty that we won’t look stupid or that we won’t mess up. This is love.

What matters most is that I show up and give everything I have got to the child who needs me. No bravado, no veil of expertise. I need this child as much as he needs me. He keeps me real. He reminds me that human love is messy. It requires authenticity a willingness to feel the fear – to be scared and stay engaged anyway. It is in the messiness, the openness to being hurt that our purpose can be found. Compassion and love live in the messiness. I am delighted that you still feel vulnerable. Be brave. Our kids with autism need you more than you know.

I wish you love, compassion, human connection and moments of utter joy on your journey!

Jenn

Author’s Note: The ideas above come from a woman who has changed the way I parent, teach and the way I see myself: Brene Brown. I highly recommend Daring Greatly and The Gifts of Imperfection. 

Check Your Advocating Attitude

Let me start with an admission. As a parent of a child with autism, I hold very strong convictions and opinions when it comes to raising and educating my children. Anyone who has worked with me and/or my son, will attest to that fact. At times, I have been strong-willed, determined and persistent. Indeed, I knew my son best. I knew a lot about autism in general and his autism specifically. I had made it my mission to learn – and to keep learning.

But, two decades in the ‘trenches’ as a mom and a teacher of students with autism has taught me that expertise can really get in the way of serving a child’s needs. I have met my share of professionals whom I disagreed with because they did not take the time to truly know my child. I am quite sure that many parents would agree with me. What I am about to say may seem harsh. But, I strongly believe it needs to be said.

Parents as experts can be just as dangerous as professional experts. Certain attitudes and actions, on the part of parents and caregivers, will obstruct a child’s progress.

I told you it was harsh.

Parents and/or caregivers who bring a wealth of information about their child and a strong conviction to advocate for their child are to be applauded, IF, they also bring along a genuine intent to listen to differing perspectives and  a willingness to change their mind. Our way may not be the only way.

Sometimes, as I sit in meetings (as a Special Education Teacher) and I listen to fellow parents, the urge to scream is agonizing. It doesn’t happen often, but when it does, it physically pains me. What could cause me, a strong advocate myself, to feel this way?

Parents who refuse to listen. Parents who tune out and disagree with anyone who attempts to share information that does not match what the parent wants to hear. Sadly, people who are genuinely seeking the best for a student can be ‘shut out’ and their expertise rejected simply on the basis that the parent ‘knows’ what is best.

The Leave it to Beaver folks would be heartbroken, but, mother doesn’t always know best. Neither does father. Sometimes, our deep love and concern for our child can leave us with blinders on; it can prevent us from hearing genuinely novel approaches, wise insights and worthwhile avenues to pursue. Ironically, it is often when we accuse others of refusing to listen that we ourselves need to do some honest self -reflection on our own listening skills.

Once we truly hear what others have shared, then we have the information and we need toParent Advocacy take the time to reflect on it. This may mean that we need to leave the meeting and think. As long as we stay open to the fact that we do not have all the answers our children will benefit from our advocacy.

Consider the perspective of professionals working with you: How willing would you be to go above and beyond in service for a person who shuts down your knowledge and insight? Some of the information and circumstances that I had opposed ended up being lifelines for our son. I was strong willed but always listening and ready to compromise. Hindsight is twenty twenty.

Parent experts can get in the way of progress.

Wishing you an open mind, a listening ear and a discerning heart on the journey,

Jenn  🙂

Wanted: A More Inclusive World

Today I wear blue. Today I join the world as it aims a spotlight on Autism. In my family and in my work, autism is a part of everyday existence. I love my child with autism and I love my students with autism. But today I stand in solidarity with hundreds of thousands of people (maybe more).

Today I celebrate the fact that we are talking: talking in our homes, communities, work places and schools. We are talking about autism all over the world. I celebrate the fact that since 2007 Autism is talked about openly at a global level and in places where it was never acknowledged.

I celebrate the fact that when I explain a seemingly odd behaviour that might be construed as ‘bratty ’is actually autism, the look I get in response is not ALWAYS a confused stare. More and more people have heard of autism. That’s a start.

When the United Nations General Assembly unanimously declared 2 April as World Autism Awareness Day (A/RES/62/139) I rejoiced. As a global society we NEED to highlight the need to help improve the lives of children and adults who suffer from the disorder so they can lead full and meaningful lives.

In his message for the World Autism Awareness Day 2014, UN Secretary-General Ban Ki-moon said it best: “World Autism Awareness Day is about more than generating understanding; it is a call to action. I urge all concerned to take part in fostering progress by supporting education programmes, employment opportunities and other measures that April 2help realize our shared vision of a more inclusive world,”

Today we celebrate the individuals we know who live with autism. We celebrate those who are learning one step at a time how to raise them, how to educate them and most importantly how to include them in authentic, relevant and loving ways into our society.

We are growing and developing because Autism has touched our lives.