I’m so excited this week to have a superstar mother and daughter Occupational Therapy team, Mili Cordero and Joann Fleckenstein of Individual and Team Therapy Services in Atlanta, which is the O.T. link of Floortime Atlanta. Mili is an Expert Developmental, Individual differences, Relationship-based (DIR) Trainer who trained with Dr. Stanley Greenspan back in the day and Joann is working on her Advanced Certificate with the Interdisciplinary Council on Development and Learning (ICDL). I virtually saw them for the first time at the November DIR ICDL Conference last year and am so happy they could join us today.

Mili’s Path to Floortime

Mili got into Occupational Therapy without really knowing what it was, but she knew she wanted to work with kids and be helpful to society. When she graduated and was newly married, she started her first job working with autistic kids when nobody really knew what to do with them and the theory of sensory integration was also just being developed. She only knew that she wanted to play with them, and no one was playing with them, she recalls. They were telling them what to do and how to do it. The children would get rewards if they did it appropriately and if they didn’t, they would sit in the corner and Mili refused to do that.

As one of five children and playing with her brothers growing up, Mili knew this was not the way to work with children. It took a long time and she was very proud to write her very first home program for a family of a four-year-old child who had no diagnosis. The mother was polite and let Mili finish going through the pages and pages and pages of a program that she was supposed to implement at home, Mili recounts, and then thanked Mili for all she had done, but said she could not do it. She had two other children and there was no way she could complete all the tasks Mili was asking her to do. She concluded by telling Mili that once she had children herself, she would see that there is no way anyone could do this. 

Mili went home and cried. She couldn’t believe that as a professional, having done all this work, that it was for nothing. Twenty-five years later when Mili was completing her doctoral dissertation, she realized that that mother was the one who inspired her to continue learning occupational therapy, to play with children, and how to support parents to be able to walk this walk with their kids. And she had four beautiful children of her own to teach her as well. Mili says she was the type of mother who would twirl walking through the mall with a playful spirit and her children were her models for work and for growth. 

The Inspirational Moment

I love how Mili instinctually know that what she saw in typical therapy didn’t feel right and play did. She knew she wanted to understand the spirit inside each child. And to have that experience with the mother so early in her career really guided her practice. I told her I could relate because when parents bring up struggles, I want to tell them to look at my website, read and listen to all the blogs and podcasts and you’ll have all the answers, but that’s not how it works. It’s about meeting the family where they’re at, which is the Advanced DIR training after first learning about what the DIR Model and Floortime are, and about the developmental trajectory.

Training with Dr. Greenspan

Mili met psychologist Dr. Barbara Dunbar after she moved to Atlanta and Dr. Dunbar was already working with Dr. Greenspan. She told Mili that there was a group who would meet in Washington D.C. and invited Mili to come. Mili had just had three weeks being outside of the home along with fellow O.T. Maude Le Roux for Tomatis training, so it was not easy to take 10 days to go to D.C. for Floortime training with four children at home, but she did it. It was the start of learning that what she was doing had a name, and it was D.I.R. O.T.’s already had to know the ‘I’, but with the ‘D’ and the ‘R’, you really had a real approach.

Joann’s Path to Floortime

Joann wanted to be an opera singer but when she went to pursue her degree in vocal performance, it took all the fun out of music for her. She took a year off after leaving that program and was babysitting a child with autism who she jokes absolutely hated her. She just kept trying and would ask her mother what to do to connect with him, and then one day they finally connected. Joann says she finally saw him instead of being the one to trick him into connecting with her so she could feel good. They engaged and that was it. She went home and told her parents she was going to be an Occupational Therapist. She had to plead her case, but she knew that’s what she wanted.

Mili says that was one of her favourite kids. Joann says that it goes to show that this child was used to someone engaging and being present with him whereas Joann was trying to ‘get the prize’ by saying she did it, which was all about her and not him. She says she wasn’t serving him until they connected, then they were together and playing. She credits her wonderful parents for her being able to make that transition from it being about her to actually being able to connect with the child. This is similar to how parents transition from panic to seeking services to getting to the place where you accept the child for who they are and support them.

Joann went for her degree and became an Occupational Therapist but the curriculum was behavioural, as was the environment at her first job in North Carolina. She was disheartened because she had assumed that all O.T.’s were as good and respectful as her mother and her mother’s peers. It was not the case. Even from a sensory perspective it was, “How can I manipulate this child to get them to do what I want them to do?” instead of being present with the client. It was tough to see over and over again. It is a choice and a mindset to be respectful and let kids express their feelings without being shamed, Joann says.

Joann had wondered if their Puerto Rican culture was why her family was different until she was in that work environment and realized that these were choices people were making in using behavioural approaches. Mili adds that in their home when Joann was growing up, she wanted to create a community so they’d have a list of chores that needed to be done and the kids would have to sign up by Thursday night what they would do. They received extra credit, which did not involve any rewards beyond a ‘thank you’, if they picked up stuff that wasn’t theirs and there was no option not to participate. Joann smiled and nodded. It reminded me of Maude Le Roux bringing up identity formation in children a few weeks back.

ADHD

Joann was diagnosed with Attention Deficit and Hyperactivity Disorder (ADHD), and although Mili may have known, she slipped under the radar for years without a diagnosis because of being a girl and not having many of the typical red flags. 

She remembers being frustrated in school when her teachers thought she was being lazy or not working hard enough. She specifically remembers in 2nd grade struggling to remember her homework. 

She saw the teacher giving another student a place to write down the homework (possibly part of that child’s IEP) and saying to Joann that she didn’t need that, but Joann said she did. At home it was, “Why is this so hard for you and what do we need to figure out?

Providing the best experience and being supportive

Mili told us a heart-warming story of how Joann really wanted to play basketball when she was about 11 years old. Mili would confide in her husband that there was no way Joann was going to make it and that she didn’t have the motor planning for it. But Joann really wanted to try it, so they found a supportive team for her to play on.

She sat on the bench most of the season but by the last game she finally made a basket–on the wrong team’s net. They still celebrated and embraced the moment.

Joann says she knew she wasn’t good at it but she wanted the experience to try something hard and she made it through it. Mili shares that their goal for their children was to provide the best experience for them and to be there supporting them in whatever they wanted to do.

The Parent Journey

Joann was told she would never be able to conceive, so when she found herself pregnant with the first of her two children and found out it was going to be a girl, she bought a very fancy pair of newborn ballet slippers. She imagined everything her daughter would do that she did including music and dance. (With a young Joann being hypotonic (low muscle tone), Mili had her in dance.) When her daughter was born, she was so tiny that preemie clothes were too big for her, and by the time the ballet slippers may have fit, she had so much tactile defensiveness, there was no way she would let Joann put on those slippers.

Joann’s daughter who is now 12 has both an ADHD and an autism diagnosis. When her daughter was about 8 years old, Joann found those ballet slippers and cried. She did have to mourn the daughter she didn’t get, but she is so relieved because the daughter she got is so much better! She keeps the ballet slippers in her office as a reminder to help other parents see that too in their own children. It’s so freeing to let go of that ideal we had in our mind because then we can respect and really be with the child we have in front of us, Joann says.

I shared the story I shared during my 2020 ICDL conference presentation where I showed the video of my son laughing his head off at 6 months old to a measuring tape and the video I then showed of him at age 3 after his brain inflammation and autism diagnosis where he has that identical contagious laugh. That really was a turning point for me in seeing that he was the same little guy I loved and helped me in my process of making the shift from grieving my son’s hospitalization and disability and feeling sorry for myself, to appreciating, respecting and focusing more on supporting him. I now just realize how awesome my kid is as he is.

Joann says that her daughter’s latest thing is that she is not even slightly scared of any horror movies. This would have been very disconcerting when she was younger, Joann says, when she would have wondered about her emotional health, whereas now it’s just a quirk of hers. I commented how lucky she is to have Joann as a mother and Mili as a grandmother and they quickly responded that they are the lucky ones, driving home our point that it’s not about us, but about our wonderful children. And how amazing that the third generation now, Joann’s daughter, is now choosing to work with autistic kids in her spare time as well.

Parent Question: Talking about Autism

This week’s Affect Autism Member parent question is about telling our children they are autistic and how to do that. In my podcast with Alex Klein, he mentioned that not telling them is giving a message that it’s something to hide. Then in the podcast with Maude Le Roux and Joann’s colleague Mike Fields, we talked about how some families tell their children and others don’t and that it’s a personal decision. The parent question this week said that their child is still young and developmentally young, so wouldn’t really understand what being autistic means. They are wondering if they should tell them, and if so, when and how?

ICDL has embraced neurodiversity and partners with the Autistic Self Advocacy Network (ASAN). They now have a self-advocate on the board and as a senior advisor. It’s the start of a journey and process. Autism is now being understood by more and more people. I shared that I’ve mentioned it from time to time in passing with our son. I mention, “you are autistic” and I mention from time to time how his school friends and him are autistic. When we moved to our new home and had signs put on our street I showed him, “Look, there’s the signs they put up for us because you’re autistic” but haven’t really gone beyond that, so I’m also curious what Joann and Mili would suggest.

Joann says she got it wrong with the ADHD diagnosis of her daughter, and got it right with the autism diagnosis. With the ADHD diagnosis she made it all about her and what her daughter’s diagnosis said about her as a parent instead of recognizing that this was an OK thing and is information about how her daughter’s brain works so she can provide information in a way that makes more sense, honouring her Individual differences. Her child was very good at advocating for what she wanted and didn’t, but Joann was still so upset about it that she was unable to separate her feelings from it. She remembers breaking down and crying with her mother at the clinic.

After she processed her own feelings, Joann was able to say to her daughter that they had this in common and could wear it as a badge of honour. And her daughter can now self-advocate and say, “That doesn’t make sense to me. I need you to explain it to me in a different way” or, “I have anxiety and am having difficulty sleeping so I need to go to this sleepover with these stipulations“, Joann explains. When they had her autism diagnosis from Dr. Kathy Platzman at Floortime Atlanta, Joann and Mili both said to each other, “Of course! This makes sense!” Joann told her daughter what Dr. Platzman thought and her daughter replied, “Yeah, that makes sense“, and that was it!

So now, Joann continues, her daughter can say, “That sensory thing makes me feel overwhelmed because I am autistic.” When they had a Covid exposure and had to go in for testing, she was able to say, “I’m autistic. Give me a minute.” Mili offers that as parents, we need to determine when the right time is to tell our children because we know our kids best. Mili sometimes suggests they do it in conjunction with a professional, especially if the parent doesn’t feel comfortable. They talk about it as if you’re blonde or blue-eyed, but not everybody looks at it that way. With the help of self-advocates, we now know what it really means to be autistic.

Mili learned with a group of people professionally who were so dedicated to supporting, but were taught person-first language. It’s taken her time to get used to saying, “you are autistic” versus “a person with autism“. Mili says each parent has to be comfortable first and it’s about the way you present it to your child that is more important. I suggested also describing that there are different brain types, just like how we can be tall or short, have blue eyes or brown eyes, etc. and even using the vocabulary of neurodiversity and neurodivergent brains, or talking about sensory differences. I can say that I don’t like sour food–how about you, for example.

We can talk about preferences and what overwhelms us. My son is a sensory seeker, for instance, but he has tactile defensiveness. He seeks vestibular movement and I am the opposite! I do not! We can talk about these kinds of things with our children. And as Occupational Therapist and DIR Expert Trainer Virginia Spielmann said in our podcast about Sensory Lifestyle, the goal really is to get our children to the point where they can confidently self-advocate. This is what Joann and Mili emphasized. Mili also points out that this is a new generation and it helps for them to be able to explain it to older generations who knew less about autism.

This week's PRACTICE TIP:

This week try to give your child some tools for self advocacy. This will depend on where they are developmentally.

For example: For a very young child, tell them a story describing sensory differences they have, and about yours as well. For an older child, you might wonder what you could do if a situation came up where they were overwhelmed. Strategize about solutions such as telling the adult you need a break, taking deep breaths, or giving our hands squishes. 

I hope you enjoyed this interview with Mili and Joann as much as I did! Thank you to them both for taking the time to share their experiences with us! If you enjoyed and found it useful and helpful, please share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Also stay tuned for next week’s podcast where self-advocate Emile Gouws will discuss the considerations around inclusive experiences of students on the autism spectrum at university.

Until next week, here’s to affecting autism through playful interactions!

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