Autism Interventions and Family Logistics

EPISODE 4:

Heather Sutcliffe is a working mom of two sons, who both have an autism diagnosis. For more than 12 years, she has advocated fearlessly to ensure her sons receive robust and consistent programming to make progress and achieve. A strong believer in coming at this diagnosis from all angles, she never takes her foot off the gas and continually looks at ways to fine tune her sons’ interventions. To honor the progress ABA therapy has made possible for her family, she recently launched a non-profit organization to support ABA for autism. Her first campaign running through 4/2/19 is to raise $5,000 that will go toward covering tuition for Simmons University students studying ABA. In addition, to reduce the ramp up time for parents and families dealing with a recent diagnosis, Heather is in the process of creating a website and blog to share what she has learned on this journey so far. Heather is passionate about giving her sons the best possible chance to overcome the challenges they face while inspiring and empowering other families to do the same.

Heather is a mentor, coach and cheerleader for other parents facing an autism diagnosis. Her extensive professional work experience in the fields of marketing and communications, is supplemented by her volunteer experience. She currently volunteers as a Support Parent with Family Ties of Massachusetts and was recently selected by Autism Speaks to be a Autism Speaks Volunteer Advocacy Ambassador. She is also a Board Member of a pediatric wellness center in Massachusetts.

PODCAST SUMMARY

The Importance and Power of ABA:

• Completely individualized for the child and situation, transcending all levels of ability
• Data driven to prove progress, then continue building on it
• Scaffolding necessary for success and progression
• Principles of ABA can be applied to our every day life to keep things going at home and in the community (can share some tips here)
• About both quality and quantity (can share some tips here)

“ABA (Applied Behavior Analysis) therapy has been absolutely vital to help our sons make progress after an autism diagnosis. 12 years in, it is still teaching me how to manage situations AND helping our sons make achievements. As it pertains to autism, simply put: ABA therapy helps our sons exhibit more expected behavior and less unexpected behavior. It truly has the power to make any situation more successful, transcending any level of ability. For me, this diagnosis has always been about one thing: Achievement. As the world moves from awareness to acceptance, we parents have always been focused on achievement. Because everyone has the chance to progress from the point they are currently to something more. ABA Therapy, a science rooted in data, makes achievement possible.”

You Get Out What You Put In:

• It is ok to be a control freak here--it is your child!
• Know and believe that you are the expert in your child, no one else.
• Play a consistently engaged and active role; observe sessions and ask questions
• If your gut tells you something listen to it...
• Don't settle
• Be hungry for information; seek it out and add it to your expertise
• Come at this from all angles and keep fine tuning.

 “You are the HUB and the GLUE of communication (doctors, specialists, schools, insurance, therapists, home assistance) and you connect the dots for everyone and keep reminding of the objective (for your child to live safely and independently in this world). This takes work and constant engagement. Thank goodness for iphones. :-) But I believe in what I call a "complete puzzle": Parents will ensure all the pieces to the plan are in place and that we are attacking this. The plan needs to be fluid, but it is possible to go to bed at night and know you are doing everything you can.”

The importance of a network:

• Other parents: To bounce things off of, get referrals from, complete understanding.
• Providers and specialists: So if there are changes (or valleys and there will be) there is never a gap and always someone to call.

And, finding what keeps you going:

• A picture with your child looking at the camera so you can stare into their eyes for as long as you wish.
• Or when you visit someone you haven't seen for awhile, and they are so impressed by the cumulative progress your child has made, that may get lost since you see them every day.
• I also recently put a photo book together for my younger son, and it was such a good way to see all that he had tried...looking at it cumulatively.