The Process of Parenting our Neurodivergent Children

Nicole’s Professional Roles

Nicole’s roles are serving children and families. As a family therapist, she works with children and their parents in private practice using the modality of play therapy to engage with her clients, and parent education is a big portion of how she supports families. As a Certified Child Life Specialist she was in a hospital setting at UC Davis Medical Centre, supporting the psychosocial needs of children and their parents in medical settings which involves working with a neurodivergent population. Since she has now left the hospital setting, she plans to share her knowledge with families and train hospital staff on working with this population as the systems that our families are in–education and the medical world–are a few steps behind.

Her Work is Shaped by Her Parenting Experience

Nicole is the mother of a 19- and a 17-year-old. She was a professional working with children and families prior to becoming a mother, and was quickly humbled by her parenting experience. She felt like she was supposed to know more about how to support her child who had very intense sensory experiences. She went on a search and because she had knowledge of child development, she could sense that something wasn’t right when her son had an almost panic response being around other babies and the sounds that they made. She reached out to her pediatrician and others and it was a very isolating experience to understand why it was so hard for him to be in the presence of others.

After a few years and contacting many professionals, Nicole discovered the sensory world and Occupational Therapy and found there still wasn’t enough information about how to potty-train her son and how to make the very loud world–as he describes it–bearable for him, including how to be in the same room as his younger sister who was on the other side of the sensory continuum to him. Nicole’s daughter came into this world loud and sensory seeking, opposite to her brother’s aversion of noise and touch. Nicole knew she wanted to attend a conference to get information because her Occupational Therapist was telling her that her son’s aversion to washing his hands was a control issue and this didn’t sit right with her. It didn’t fit. Something else was happening, but she didn’t understand it.

Nicole found the Sensory Processing Disorder clinic and Lucy Jane Miller and told her husband she was flying to their conference as it was the closest thing she’d found to describing what was going on with their child. He came with her and they felt like they found their people–those who could describe their child to them, without having met him! There were professionals there who could teach her how to help their son because their social world had shrunk. They had difficult experiences in preschool, going to the grocery store, or visiting other people’s homes. They decided to get him treated at the STAR Institute in Colorado for two summers and that’s where they learned about sensory processing. Autism was still not completely clear at that point.

Embracing Neurodiversity

Nicole’s son received many different opinions from many professionals from Pervasive Developmental Disorder (PDD) to Not Otherwise Specified Disorder (NOSD). Her son’s verbal skills were very good and he had very engaging eye contact with adults, so an autism diagnosis came much later. But Nicole is trying to change her language around diagnosis to move away from the medical model of disorder and move towards embracing neurodiversity where brain wiring is just different.

It was at the STAR Institute where Nicole learned about the book Engaging Autism. The title scared Nicole. She had worked with autistic children prior to having her own, and it didn’t seem to fit with what she knew for her child. She had even done Lovaas behavioural training with an autistic child as an undergraduate intern. It didn’t fit for her. It didn’t fit how she wanted to engage with children.

Nicole’s child seemed to be confusing to professionals because of his ability to speak and engage with adults. The nuances of his profile were not well understood at the time. He had his diagnosis at age 5, but at the STAR Institute when he was 7, they were thinking that it was Sensory Processing Disorder (SPD) and at the time they were still hoping to get SPD into the Diagnostic and Statistical Manual (DSM).

It was about getting services when they got back home and in their child’s school. Embracing the term ‘autism’ came much later when he was more of a ‘tween’ when the gap of how he engaged with peers and how his peers engaged with peers was more pronounced and this brought more struggles. She thought this must be more than sensory processing.

Advocating for your Children

During this time, so much of Nicole and her husband’s focus as parents was on their son due to his fear of the world and his anxiety. Their daughter’s adaptability made it easy to just move along. She was in a play-based, parent co-op preschool that was child-led and engaging, so they kept her in for an extra year since she was thriving. The preschool had a big, open yard, so she spent all of her time running, riding bikes, and spinning on a tire swing, getting all of the input she needed.

Nicole knew that Kindergarden would be tough having to sit in circle time and attend to the group. The challenges with her were more school-based because of her anxious response and her sensory profile. She presented more how the gendered view of little boys is: not wanting to sit still and needing to move their bodies, but she was pretty compliant so she wasn’t disruptive.

Nicole’s daughter moved along until about 5th grade where Nicole knew her child needed more support. Nicole proposed that she had ADHD (like her father) and it was accurate. It became a full-time job and her professional work world became secondary. She ran into many blockades despite having done the research and supporting her children, so it drove her current professional life. 

When Nicole’s son was diagnosed, all they could do was give her the number to their regional centre and a photocopy of resources that she might seek out and to say that she could let her child’s school know about them (even though he had gastrointestinal (G.I.) issues and anxiety that were not being recognized in the medical world, struggles that neurodivergent kids have). Then, the school was saying he wasn’t disruptive, so his behaviour wasn’t warranting much attention.

Nicole had to advocate strongly for the fact that engagement is part of education and that her son was challenged on how to engage. Elementary school curriculum was easy for him. His challenges were engagement and sensory issues, including the numerous drills they would have at school that are so noisy. She had sat at the IEP meetings as a school councillor before becoming a parent so she knew that process, and her husband was a teacher and knew that process, so they were shocked when they weren’t met with open arms or a collaborative spirit.

Nicole and her husband really had to push, advocate, and educate. She had to go to the district level to ask what can be done for parents who are exhausted on even any given day, and don’t have the reserves or the financial capacities to hire attorneys because they’re all paying privately for Occupational Therapy and other services. They were met with blank stares as well. They were offered aids on the playground, or that their child could just come sit in the office during recess. That was not an appropriate accommodation but that was what was being suggested, Nicole continues.

As a parent, Nicole figured that he wasn’t the only child struggling so she volunteered twice a week for a few hours at the school, trying to fill in the holes in the systems that were lacking in understanding and resources. The systems still have a long ways to go, she asserts. They weren’t getting the help they needed through their medical insurance model and so they chose to get their services privately. The team at the STAR Institute showed them how to support their child and Nicole wanted to bring that back to her community, so she started an SPD (sensory processing disorder) parent connection group and helped facilitate that for a couple of years.

Adolescence became another time when Nicole had to stop working again with the demands of parenting her children and a need for advocacy. She had heard the quote that parenting is the perpetual state of letting go with each stage of development. It’s hard when you’re in the role of being the co-regulating parent. We take more of a primary role than other parents have to with their children in helping the sensory system feel safe. When our kids start to separate and individuate, which is developmentally appropriate, it looks and feels different than it does in neurotypical kids, Nicole says. 

Mentoring the Next Generation of Parents

I share with Nicole that her and I bring with us this experience and empathy that we can relate with other parents in our professional roles, even though our experiences are all different. I shared how I can struggle going back to an earlier stage I went through with my child without wanting to provide solutions to parents in the parent support meetings I facilitate. I forget that it took me a long time to get used to all they’re going through. Nicole says that in her training, accepting people where they’re at has helped her. 

Nicole continues that her parenting experience of complete compassion for the challenges that neurodivergent kids experience for themselves, and the impact on the whole family, and the amount of compassion she feels for the process, makes her realize how important it is to extend as much grace as possible because she, too, rejected the label of autism due to getting mixed messages of what that label meant. She also teaches undergraduate Family Studies at Sacramento State University. One of her leading points is to suspend judgment on parents who are doing the best with what they know at the time.

DIR Model Supports Families

Nicole asks herself how she can use her skill set and background to support the next generation of parents coming up. She would have loved to have those people living ahead of her more than she had. That’s why she reconnected with The Interdisciplinary Council on Development and Learning (ICDL), thinking about Floortime because she’d like to get trained in Floortime to offer it in private practice as a Family Therapist because she believes that parents are the key to supporting their kids.

She has more capacity right now to share with others, so she took my BE S.U.R.E. course from ICDL where she learned about more resources that weren’t available on her journey. There’s so much information out there, it’s overwhelming, she states. She needs to weigh what the professionals say with what her gut says as well. Then she needs to see what her partner thinks about it, then decide what they want to support as a family and how their child will interact with it. It requires a lot of patience and sensitivity to the process and there’s no one right way despite how much we all want to have the prescriptive instructions to follow.

Listening to the Voices of Autistic Adults

Next, Nicole talked about how she found out how important it was to listen to the community of autistic adults. She really sought out support when she was struggling with how to parent an adolescent from this community because she realized she viewed the world so differently from them. She wanted to know how to co-regulate an adolescent when she didn’t necessarily need to co-regulate.

I asked Nicole if there were certain places she went to, seeking the voices of self-advocates? I’ve had Kieran Rose on the podcast whose work I’ve personally found extremely helpful. Nicole found self-advocates on Instagram using the hashtag #NothingAboutUsWithoutUs after her child wanted to be on Instagram. She reached out to a few who offered to support parents and had phone conversations with them. 

Parenting an Autistic Young Adult 

She also found the AANE (Asberger Autism Network) on the east coast which has a coaching program that she’s encouraging her young adult to consider taking. One piece of advice a parent at the STAR Institute gave her was that once a child reaches a certain age, your level of influence as a parent drops drastically. It’s so hard as a Mom, Nicole says. She just can’t sign him up for something. He has to want to do it. I stated a disclaimer that Nicole doesn’t mean she should run the show for her child and drag him to any appointments she thinks he should have!

Nicole and her son have had conversations about autism. He felt he learned about it too late and rejected it because his understanding of it was that it was someone with higher support needs than he had. He wants to be like his peers. How do you balance and support that, too, Nicole wonders. For one of her children, it’s easier to advocate than it is for the other. Nicole is trying to boost the child who struggles with it. For Nicole, it was also a huge adjustment as a parent to lose the line of communication of talking to her son’s providers, without his permission.

The process, emotionally, as a parent of having to let go needs more attention, Nicole believes. It’s hard for parents to step back and do a step-back consultation. I add that we’re so worried about our children that sometimes we control every aspect of their lives because we feel like we have to to protect them. We do our best to take good care of them and do so much for them but as they grow, we want to promote independence and agency. We need to learn how to do that. 

And we need support to do that, as parents, Nicole says. For her, when she struggled at home she used the DIR Model to remember that at all costs, maintain the Relationship. That pushing and pulling that happens in adolescence is more pronounced with a neurodivergent child. At the end of the day, Nicole wants to have a connection with her children. It’s a constant practice, she admits.

Normalizing Neurodiversity

We’re hearing more and more about neurodiversity, I continue, but it’s not mainstream yet despite Steve Silberman’s Neurotribes in 2016. There are also now more and more neurodiveristy-affirming, autistic-led facilities opening up offering supports and treatments for autistic children and young adults. Nicole does trainings with child care staff including HeadStart and Crisis Nursery and she asks if they’ve heard the term and mostly it’s ‘no’. It’s a paradigm shift that can help make our world better, Nicole says, if we have an appreciation for how brains are wired differently. There’s no right or wrong. There is momentum now with the neurodiversity movement, she adds.

The medical community doesn’t embrace neurodiversity, Nicole says. A lot of the research grants getting funded are medical model based, looking for genes and medication, missing the social support, accommodation, and remediation pieces such as Occupational Therapy services for motor planning challenges, or sound therapy for auditory processing. There are so many supports we can put in place that are neurodiversity affirming to support the disabling aspects of autism, Nicole adds.

Even the Center for Disease Control in the USA just published revised milestones from age 0 to 5 years, Nicole says, and she sat in on a call with someone who was still speaking about a cure for autism. Nicole mentioned to those on the call, “What about the idea of neurodiversity and supporting families with this belief system that is different than the medical model of diagnosis/cure?” So, as parents we’re still having to constantly figure out where do we stand, how do we support our child and how do we empower them, Nicole adds. 

Nicole’s kids hate the word ‘disorder’. How do we be mindful of language? Nicole says she still catches herself. I acknowledged that, too, and offered heartfelt apologies to listeners if even in this podcast Nicole or I said anything that made listeners cringe. We are still parents learning ourselves, and the last thing we want to do is say things that offend anybody. Nicole says that she really likes the idea of having compassion for parents who are trying to do the right thing. That’s why she really wants professionals to stand up and take responsibility for the role they play in influencing parents. 

Parents look to professionals for the answers when we are lost. So many professionals aren’t taking that responsibility and listening to advocates or learning what they need to learn to be more current, whether it be nurses, pediatricians, mental health professionals, or others, Nicole explains. There’s a shift happening, and it’s an important one, and it’s neurodiversity affirming (which is always the better way to go, Nicole states). Nicole is always reminded of how far we have to go when she interacts with professionals who still say, “I’m so sorry” instead of looking at the gifts and differences and looking at the complexity of humanity, which parents so desperately need, Nicole stresses.

Some parents and Nicole are starting a neurodiversity network for parents whose kids are past high school and need a new kind of support for one another. One thing they discuss is how it would be so great if parents could be given the permission to delight in their child after learning that they are neurodivergent. It’s hard when we’re constantly looking for what we can do to help, Nicole explains, and the media is very strong in how that is shaped. It can and needs to be so much better, Nicole states.

What about ABA?

I asked Nicole if her family had experience with ABA (Applied Behaviour Analysis), given that she was a behaviour aid before having children and is now a relationship-based professional. Nicole says that they never did ABA. It was never something she considered with her focus on Relationship. Her family saw Occupational Therapists at the STAR Institute and psychologists who worked on emotional aspects of development. These professionals helped guide how her family proceeded.

It was the early 2000s, and ABA was not the billion-dollar industry that it is now, Nicole explains. It concerns her that ABA is mostly what parents are hearing about today in that it’s not for everyone. She hopes that DIR/Floortime gains more traction in the insurance world and medical community. I took this as the perfect opportunity to point listeners to the DIR Coalition of California which advocates for DIR/Floortime at the state level.

Thank you to Nicole Mank for sharing her experiences of her parenting and professional journey with us. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.

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