Marisa Howard-Karp, MS
May 25, 2022

Setting up children with disabilities to live their best lives…and new tools for families.

If you care for a child with a disability, our recent webinar series has tools to support you from before diagnosis right up to adulthood.

“…That’s my hope for [my daughter]… that there are people around her who know her, who have some level of understanding of her, and who are positioned to help her live her best life… And that is my hope for any and all of you… who have family members, loved ones, children with disabilities.”

Raymond Jetson, Founder and CEO of Metromorphosis, Building a Village of Support

If you are reading this, it’s probably because you care for a child with a disability. Maybe they are your own child, or maybe this is part of your work. For many of you, like for our team members here at Exceptional Lives, it’s both. 

Maybe you’re here because you’ve been noticing that your child seems different from the children in their morning preschool program. Or maybe you’re here because your child with a disability is getting ready to graduate from high school and you’re worried about their transition to adulthood. What we all share is the hope that Raymond Jetson named: that our children will be surrounded by the people who know them, understand them, and care for them.

Between January and April this year, more than 360 parents, caregivers, and providers from throughout Louisiana and many other states came together to support each other and learn from professionals about the ways we can set our children up, as Mr. Jetson said, to live their best lives.

With support from The Huey and Angelina Wilson Foundation, Exceptional Lives partnered with eight amazing professionals from Baton Rouge, Louisiana to offer 12 webinars that addressed challenges that families – particularly families of color – face when raising children with disabilities

Dr. Jaleesa Alexander addressed self-advocacy skills for teens and young adults:

“With self-advocacy comes responsibility. With self-advocacy comes empowerment. As parents, we have to give our kids enough space to make these decisions for themselves when it comes to self-advocacy.” 

John-Pierre LaFleur from the East Baton Rouge Public School System offered advice on supporting our children’s mental health:

“If we are all engaged with improving our mental health, it’s going to have an effect on the entire family. And not just the family, but the systems that surround the family as well.”

Dr. Leslie Grover of Assisi House described the value of storytelling in helping young people develop a strong identity and advocate for themselves:

“Storytelling helps us give structure to the things that happen in our lives, and it gives meaning to what happens in our lives.”

In addition, Samantha Johnson of Collegiate Baton Rouge talked about using restorative practices to manage behavior in teens

Donyelle Clark-Kennedy of Rise ABA talked about recognizing and acting on early signs of disability or delay.  

Corhonda Corley, a parent and disability advocate, addressed how to recognize and manage discriminatory practices in programs and services for students with disabilities

And there was so much more.

We are so grateful to each of the speakers who shared their time, energy and expertise for this series. You can learn more about all of them and the programs and services they offer on our webinar page.

Missed the webinars? Want to watch them again? Want to hear more from our excellent presenters? Check these out:

The full recordings of all 12 sessions are now available. Each session is about 45 minutes long and the videos are captioned in English and Spanish and include transcripts if you prefer to skim through.

Watch our 2-minute videos (also captioned in English and Spanish) from the webinar presenters answering common questions from families. Here a few of the videos you’ll find:

We have more of these in the pipeline, so check back over the next month for new videos. And in the meantime, please make sure to follow us on Facebook and Instagram and subscribe to our podcast, Just Needs

  • Marisa Howard-Karp, MS

    Chief Operating Officer

    Marisa Howard-Karp has spent her career focused on improving access to health care and education, including 15 years providing professional development training to educators and social workers. As a parent and caregiver to four children with disabilities, she has been part of more than 40 IEP meetings (and counting) and has more experience than she wishes she needed navigating complex services and systems. She loves the work of making these systems easier for other families. She’s a non-profit lifer and a Georgia native who has made her home in the Boston area.

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