Following My Daughter’s Lead…With Some Help

| 0 comments

I had a full circle moment last week following a short-notice, urgent Individual Education Plan (IEP) meeting for my high school aged daughter. I had just helped communicate her wants and needs to her team and to shape a vision for her next three years. We had made drastic changes that were long overdue. To prepare for this meeting, my daughter and I had shifted our approach. It reminded me of another big shift over a decade ago.

From the moment of my daughter’s autism diagnosis, I was given a complete alphabet to-do list: OT, SLP, ABA, PT, IEP. In my desire to get her the support and tools she needed to navigate the world, I never stopped to think about what she wanted or to ask, “are these options right for HER?”. We joined the waiting lists and started therapies as soon as possible. So, for a short while, my toddler had an almost full-time job of going from one appointment to the next. She began refusing to go to most things except for music, swimming and art. It took me a few months to understand that she was telling me what she wanted to do, what she needed to do.

So, we shifted our approach. I followed her interests and strengths. She grew happier and more confident. Over time, we added massage therapy and music therapy. We made other shifts through the years. We let go of physical therapy for swimming lessons. We added mini adventures in our metro area: amusement parks, llama walking, and thrifting. Moods improved; friendships formed. I discovered that, when learning feels like play and adventure, and with visual supports, my daughter is completely invested.

Fast-forward to a few weeks ago. During a night of worrying-about-her-future-induced insomnia, I searched the web (a parent’s strongest tool and, sometimes, nemesis) until I stumbled across a LifeCourse Guidebook. I recognized it immediately as a game-changer for my parenting. You see, I used to say autism parenting doesn’t come with a map. But I found a map! The LifeCourse visual tools could help me bring my daughter’s voice to the center of decision-making for her future! I drew on the materials to create questions and art projects that helped my daughter communicate what she wanted (and didn’t want) in her journey for life. She added her voice as the most important advocate for her future. The visual tools helped us expand our thinking to include mental, physical and social health.

Walking out of this recent IEP meeting, I smiled. I realized that, through her self-advocacy, my daughter called this meeting and drove the changes we made. As a result, she is going to a different high school in the fall. Her closest friends go to the school she’ll be attending. She’ll see familiar staff. She missed that desperately this past school year. She’s been communicating in her own way this entire time! It was the way she communicated via the visuals, prompts, and projects that helped me figure out what she needed and wanted to thrive in her next years of school. With some help shifting our approach to center her wants and needs, it all seems so obvious!

I wish I would have found LifeCourse tools earlier. I am so grateful I found them now, when our school struggles were really spiraling. We now have a map that we can revisit, a conversation that we can continue as we navigate (with my daughter leading the way, of course). Perhaps, this might be a “map” you were hoping to find too. Spare yourself the web surfing and start with this great resource:  LifeCourse Guidebook for Families. More information, an overview, and fillable PDF tools: https://disabilityhubmn.org/for-families.

Acknowledgements

This article was made possible thanks to a grant from the Minnesota Department of Human Services.

Author: Jen

Jen lives in the Twin Cities with her husband and daughter. In 2009, doctors and educators diagnosed her three-year-old daughter with Autism Spectrum Disorder (ASD). She has been navigating autism by becoming a passionate advocate for families and always seeing the humor in this journey.

Thoughts? Post 'em.

%d bloggers like this: