Rewriting the IEP Narrative: The Affirming Village

PHOTO CREDIT: The Affirming Village

On Episode 293…

This episode features a new empowering podcast called The Affirming Village which focuses on creating more neuroaffirming spaces for neurodivergent and disabled learners–a topic that comes up regularly at ICDL’s parent support meetings. Dr. Destiny Huff, LPC and Educator Lisa Baskin Wright talk about their personal experiences as neurodivergent mothers advocating for their children in ableist school settings, about their professional work in this area, the biases families face, and their new podcast that provides a neuroaffirming space to discuss these issues.

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Quoted directly from The Affirming Village Podcast description: The Affirming Village podcast is “a black and white neurodivergent mama duo rewriting the IEP narrative with lived experience raising neurodivergent learners. One is still deep in IEPs and school calls; the other has walked the path into adulthood. Both are non-attorney special education advocates, with years of experience, whether in the mental health field or the school system, currently helping families navigate the IEP table with clarity, compassion, and power. While training schools, organizations, and parents to create more neuroaffirming spaces for neurodivergent and disabled learners. This is where professionals meet personal and stories, strategies, and community come together.“

This Episode’s Guests

Dr. Destiny Huff is a Licensed Professional Counselor (LPC) in Georgia, and an Autistic and ADHD mother of two under age 18. Lisa Baskin Wright is an educator in California and an ADHD and Dyslexic mother of two over age 18. Destiny and Lisa have recently launced The Affirming Village Podcast.

Introduction to Dr. Huff

I first heard of Dr. Huff on the Uniquely Human podcast. This is exactly what parents come to me with at ICDL’s parent support meetings, so I started following her on Instagram and by proxy I heard of Lisa there. Destiny says the podcast was her idea. She’s been in the mental health field for over 15 years and has always worked with children. She’s a certified trauma therapist for children. Also worked with children in foster care and in the juvenile justice system and as a mental health professional in early childhood, elementary, middle, and high school settings. She’s worked with educators and administrators working with mental health.

Destiny got interested in neuroaffirming practice when she became an advocate for her oldest son entering into the public school system being undiagnosed. Being a military family, they knew they’d be moving a lot. His first year was very traumatic and she says her whole family could have all been diagnosed with Post-Traumatic Stress Disorder (PTSD). They moved and switched schools and spent the next year teaching their son that school is a safe place where he is wanted. The staff was phenomenal and that’s how they got to where he is now, in a great place, Destiny shares.

During that time, Destiny’s youngest son had a speech delay, so they knew he would need some type of support in school whether it was a 504 Plan or an IEP (Individualized Education Plan), and it ended up being an IEP. They later discovered he has ADHD because mom is a mental health professional and then she ended up seeking her own diagnosis and was diagnosed as Autistic and ADHD. She began to do her research. Her mother and sister are general educators and she started looking into what IEPs are.

She came across Autism in Black with Maria DavisPierre and Cheryl Poe at Advocating for Kids, Inc. Then, she found Lisa in a mentorship certification program which Destiny went into to learn more about IEPs. It helped her with her advocacy business. As she was following Lisa’s content, she became curious about what “neuroaffirming” meant and soon realized that everything that was giving her the “ick” about practices, policies and procedures was rooted in compliance whereas the neuroaffirming side was about adjusting that and looking through a different lens. This resonated with her, having always supported children and adolescents.

Next, Destiny joined Lisa’s neuroaffirming parent group and they started to find themselves consulting, collaborating, and communicating on a daily basis getting each other’s input on different things. She decided she wanted to start a podcast and shared the idea with Lisa. She couldn’t imagine doing it with anyone else and knew it would be a neuroaffirming topic. 

Lisa’s Background

Lisa’s children are grown. She’s a former general education teacher who comes from a family of educators, administrators, and special education teachers and directors, including her in-laws. Her family’s journey started with their daughter in special education, which was not pleasant. Her family background didn’t prepare her for the experience of a high-masking autistic daughter who didn’t yet have a diagnosis. They ended up having to take a legal path, which was unfortunate, since Lisa’s natural approach is collaborative. It was confusing having to be combative while having to form relationships with her daughter’s educators.

Lisa has also supported new educators and it gave her a new perspective. She has been described as “leaving her own lane” because she was curious about the learners whose needs were not being met. Meanwhile, her husband was writing a book. In fumbling to promote the book, Lisa came across the program where she met Destiny and got their feet wet in the advocacy world, how to set up a business, and how to work collaboratively with teams. She started the Neurodiversity-Affirming IEP Community but recently changed the name to the Neurodiversity Affirming Parents Group to open the doors to a more broader cohort of folks. Those who were attending didn’t necessarily have learners who were in brick and mortar schools with IEPs. It was really for caregivers raising a disabled or neurodivergent learner seeking connections with other parents and caregivers. 

Lisa’s husband was connecting with a lot of autistic adults and she was getting curious about their lived experience. It changed the way she parented. Although her and her daughter were always close, it allowed her daughter to unmask with Lisa. Lisa started really listening to her daughter’s perspective and really understanding that whatever “ick” she had been ignoring and hearing from less-affirming professionals, her daughter’s voice mattered most. Lisa was then able to apply this to the IEP space. She had been used to biting her tongue and not amplifying her daughter’s voice for fear of retribution against her daughter.

This Important Advocacy Work

On their podcast, Lisa and Destiny are both so clear about their affirming stance with their own children. It’s why they’re drawn to each other. It reminds me of the episode with fierce advocate Kim Kredich. It astounds me that even when two educated and well-informed women struggled with this process, what does that say for others who maybe have English as a second language or who face discrimination due to intersectionalities?

I also thought of how hard it is to stand up to people in meetings, especially with how women tend to be people pleasers if they are autistic maskers and the sexism that women are seen as controlling and bossy if they stand up. It’s such a fine line to walk. I love this space Destiny and Lisa have opened up because so many parents end up having to homeschool their children when it becomes a choice between spending the energy to support their children or on battling a system. It’s such an injustice when laws are in place to protect the most vulnerable children and yet aren’t enforced. I really admire the work these two women do because it is so important.

Driven to Homeschooling

I was surprised Destiny said she hadn’t know about IEPs because that’s all I see her post about! That’s the autistic in her. She dove in full force and became a specialist at it! I asked if in their services if they see a split of parents who homeschool versus those who battle the system. Destiny said she spends a lot of time reassuring families that she advocates for her own kids, too, but her emotions can’t always be tamed when it comes to her own kids so she might have to hire Lisa! One of the reasons she gets hired as an advocate is that the parents are tired.

Destiny also reassures parents that it’s OK if they feel they can’t homeschool their child, even though school is not supportive. Destiny challenges us to remember why school was created: it is 8 to 10 hours each day so parents can work so the economy can keep rolling. It was never meant to be a safe and transformative environment. It started as daycare then they decided to teach children something.

There’s no world in which Destiny sees her or her husband homeschooling because they keep their safe space at home and have their sons go to another space for learning. If she ever did have to homeschool, she would designate a different space for education. Lisa agreed that it’s not for everyone. Lisa’s daughter was in 11 different placements and one was in homeschool following a crisis.
They did designate a separate place and they were fortunate enough to have the space to do that. Her husband made it a sensory classroom. They had an entire village of educators in their family to support them. This is just not feasible for many parents.

When a learner is at the place where so much harm is done and the child can’t physically get themselves into the school building it’s heartbreaking, Lisa says. I pointed out that–in the specific case of aggression–no teacher goes to school to get injured by a child, but by the time a child is injuring a teacher, so much is misunderstood and it all escalates into uncontrollable factors that lead to surviving. It seems that looking at the source of the issue and making an effort to understand the child’s experience is not in the forefront. I also pointed out that in the first episode of Autistic Moms Chatting, my guests talked about alternative ideals for families when it comes to “schooling.”

The Affirming Village Podcast

Destiny researched what was out there and was thinking about Lisa’s parent group and realized that it’s about them building a village with all of hers and Lisa’s experiences as a guide. Lisa’s daughter had already applied to college and her son was already in college. Destiny’s children are still in elementary school. Lisa’s been through due process. They have so much experience personally and professionally to dive in. Also, they’re big on accessibility. They do a lot of paid work, but the podcast is free and accessible to anyone. It was important to Destiny that listeners know where their hearts are and what they stand for.

Lisa pointed out that while there are children struggling, so are the teachers and administrators–especially as the United States government is defunding education. Also, navigating education, healthcare, or insurance when you have a disabled learner, you can feel very alone in your parenting journey, she affirms. When things are rough, it’s a constant daily assault and it’s very isolating, so they wanted to take up a tiny corner of accessible space to support families so the families know they’re not alone.

I added that parents can be so overwhelmed as much as their child, especially if they’re neurodivergent. Managing all of the paperwork and battling is completely overwhelming. You can get stuck in rumination of doom. Having supportive voices like The Autism Dad on Instagram providing that bit of hope to hang on to is so important to provide energy to continue to go forward.
Having to justify deficits so your child can get services and funding is draining.

Lisa hopes that through the conversations on the podcast, they give parents permission to see their children in their full humanity. In the parent journey it’s important to find those moments of joy and respite, even if it’s just 5 minutes she states. Also, there are times where we get wrapped up in the angst of navigating the systems and constantly having to “justify what’s wrong.” IEPs can be very deficits-focused. We’re trying to get our child what they need and it may not resonate with how we parent and actually view our children.

Navigating Bias

Destiny continues that one of the things they really stress is that you can’t be collaborative with the IEP team while also calling out the ableism and the compliance-based approach. She’s very clear that she doesn’t agree with this or says that she thinks “we are the ones causing this.” You have to go into the meeting and say that, she insists. You have to say, “Yeah, that’s not really going to work for my kid” because you have a different understanding of your child than they do.

That’s what Destiny’s really excited about with the podcast. Her and Lisa live this; they’ve done this. This is their life, too. To hear from others who are walking in or have walked in their shoes is powerful. There’s a lot of incorrect information, as well, so Destiny also wants to help educate about capacity in different states as much as they can. I pointed out that hopefully what they’re going to do is normalize the bassline that should be acceptable because right now we have to talk about deficits, which you’re not super confronted with when you make a neuro-affirming environment for your child. Facing this is so demoralizing.

I shared how past guest Chele Abraham-Montgomery talked about the importance of representation in services and how she would be talked down to in IEP meetings because she didn’t have the “letters” after her name. Destiny looked for resources for black Autistics and that’s how she came across Autism in Black. Destiny had a bad experience in a school that was very ableist, but the things said were also racist. The team said they had never had a child who was autistic behave like her son and that she should consider an Oppositional Defiant Disorder diagnosis.

Ironically, Dr. Huff was the only one in that room who was qualified to make that diagnosis. It really got her. Her son’s whole life he’d been in a structured setting since he was 7 months old. He’s been in classrooms and around other students. Would they say that to a parent who wasn’t black? Destiny and her husband have a level of privilege because they have multiple degrees. In that situation, he was an officer in a military and she was a mental health professional. It made them aware of families who don’t have those credentials and she saw how many mothers ended up homeschooling. When they tried to suggest Destiny homeschool, a school psychologist pointed out, “I thought Mom works?”

Destiny knew that in this podcast Lisa would never bat an eye about saying that race plays a factor. That’s why they put in the podcast description that there’s a black mom and a white mom because being black is Destiny’s reality. Lisa shared that it’s critical as a white woman to recognize how race plays a role. It’s impacting access and how learners and parents are treated in public education, and she has to make sure she’s cognizant to that. She knows that if bias about race are playing a factor, she’s adding to the harm if she doesn’t name it and call it out. She can do that while still being affirming.

Whether it’s racism or ableism, it’s so embedded in our culture and systems and even in our own thinking, whether we realize it or not. Talking about it helps us be aware of it too, I suggested. Lisa said that it can be uncomfortable to name the bias, but if you don’t name it, you can’t unlearn it and then learn something new and see the learner as a whole human being with all of their identities. She wonders if some are seeing a child’s behaviour through adultification or aggression. Are they giving a white learner a pass because they have a bias? I added other factors including if it’s a girl or a boy, a black girl versus a black boy, or a minority and other different possibilities. 

I made the comment in the second Autistic Moms Chatting episode that my son just loves all of his friends who are minorities and Kelly Bron Johnson pointed out that you can’t say you don’t see race because it denies another’s identity. Research shows that while young children might not notice race, the trend changes in middle school and grows after that. I wondered how that impacts the child’s self-esteem and what they grow up believing about themselves when they’re younger and have friends who look different to when labels start to get thrown around as they get older.

Lisa loved that I brought it back to the learner because that’s where her and Destiny start and finish, she says. I also pointed out what Sophia Ashman said on my 10th anniversary podcast episode about just having a child feel that at least one point in time “someone understood me and I mattered to somebody.” That’s what we want our children to feel–even if there’s only one person at the school who can be an advocate and a pillar of strength.

Neuroaffirming Trainings

I asked if the guests train organizations. Destiny says that her and Lisa both do trainings for schools, organizations, and communities. Destiny has done trainings for paraprofessionals, early childhood educators who work in child development centers, and also through her virtual affirming summit she trains SLPs, OTs, educators, and more. She’s trained all over, including virtually. Lisa has participated in summits and has been brought into an SLP group to provide training. She’d like to grow this part of her business going forward–the 360 view. She did a lot of peer-to-peer training when she was an educator.

I shared that my colleague, Educator Jackie Bartell says that we make an impact “one by one by one.”

Thank you to Dr. Destiny Huff and Lisa Baskin Wright for sharing the story of their careers and the inception of the new podcast. If you found this episode interesting and informative, please consider sharing it on social media.

Until next time, here’s to choosing play and experiencing joy every day!