Parent Perspectives: Navigating Our Different Support Roles

Photo credit: James Gana

Parent Perspectives

On this edition of Parent Perspectives from Affect Autism, we have a discussion with a mother and grandmother of an autistic son and grandson about navigating her support roles. Parent Perspectives is an addition to the usual podcasts.

This Week’s Guest

This edition of Parent Perspectives features returning guest, Michele Abraham-Montgomery, who specializes in Family Services, Autism Resources & Advocacy, Peer Family Coaching, Peer Best Practices, Modeling Play Therapy Techniques and IEP Reviews and Preparations. Her and her autistic son, Khylil, whom we podcasted with last year, and with whom she will be presenting at ICDL’s upcoming DIR Conference, created Spectrum Success 911, a nonprofit organization, connecting families with community resources and organizations of support. Chele also provides programming and resources including Autistic Ambassadors, a virtual support group called The Ausome Movement and more! She is also now the supportive ‘glam’ mom of an autistic grandson as well and today we will be discussing navigating advocacy from the backseat and all the different support roles we play.

Autism the Second Time Around

The beauty of everything the second time around, as a ‘glam’ mom, Chele begins, is identifying the behaviours that she didn’t recognize the first time around with her son, Khylil, such as when he wants those deep hugs. She never knew what Khylil was doing, but now she understands what her grandson is doing. She is recognizing her grandson’s non verbal cues. The phase of acceptance begins with rejection. In the beginning, the parents have a hard time accepting that their child has a diagnosis. They get to acceptance and eventually get to embracement. With her grandson, she is now really embracing.

Navigating from the Back Seat

Chele says that her daughter has come in and gained her crown as an Ausome mom from the very start of Chele’s autistic grandson. Chele’s daughter remembers the services she’s getting for her son from when she was younger and her brother was receiving services. Chele says that she has to navigate from the back seat as a grandmother, allowing her daughter to have that space to come and ask her questions, as opposed to pushing information on her daughter. 

Listening to her daughter engage with the services for her grandson really makes Chele see how much her daughter was paying attention, and her daughter was the baby of the family. Chele says that she unintentionally made her daughter a co-taker of her brother by saying things like, “Make sure you take care of your brother“. In doing so, her daughter became the ‘big’ sibling, in a sense. Chele sees that her daughter really was paying attention and absorbed everything with her brother. I pointed out that she had a good role model in Chele.

What about when she’s not catching things that Chele notices? Chele says that social media is prevalent now, which wasn’t around when Khylil was young. Her daughter will go to TikTok and Chele will wonder why she’s not asked, but she has to bite her tongue and be there with the safety net if her daughter comes to her with her struggles. Chele allows her daughter to have that space to make her own errors. She says you have to stay in your supporting lane and wait until they come to you, then be ready to ‘brush them up’ with love, which, of course, is easier said than done.

Acknowledgement of the Parent, First

Chele had to learn from the start to acknowledge her daughter–her ‘baby’–first, even if the grandchildren are running to her. She’ll love her daughter first, and then love the grandkids. She is seeing on TikTok now that adult children are complaining that their parents let the grandchildren ‘get away’ with things that they, themselves, never got away with growing up. Chele says we have to make sure we don’t make our children feel invisible once the grandchildren come. She keeps her daughter as ‘her baby’ first and foremost. 

I commented that it must need to be something very intentional because it might not come naturally. Chele said that if the grandchildren run to her first, she’ll pick them up and run to her daughter and have a group hug. I love how Chele has the insight of how she’s being received. Chele says that she has learned to accept that her own parents did the best they could with what they had. Being aware of her mother’s undiagnosed bipolar disorder has helped her understand why her mother did what she did, and helps her to recognize behaviours in her daughter due to her daughter’s diagnosis. It allows Chele to help her daughter to cope.

Breaking the Generational Cycle of Behaviours

Chele also added that she remembers feeling invisible and unloved as a child. As she got older and more educated, she realized that her parents did the best they could with what they had at the time. Her mother had her own background with her own parents. Chele talks about breaking the cycles of generational behaviours and starting new ones with her own daughter, which has been hard, but is necessary. The end of her mother’s life was the best six months of Chele’s life because she finally felt seen by her mother, who was wanting to draw close to Chele and her siblings.

Chele’s mother gave her so many ‘gems’. Chele said it’s important to collect these gems and pass them on to her children and grandchildren. Her mother would tell Chele’s children how much she loved them all the time, even though she never told Chele much that she loved her. Chele decided to make sure she told her children how much she loves them so they know. I referenced Dr. Ira Glovinsky’s discussion about Selma Fraiberg’s term ‘ghosts in the nursery‘. I also love how Chele ‘presumed competence’ in her self-reflection (FEDC 9) in her parent’s ability to do the best they could.

Hearing the Voices from her Different Support Roles

As a peer professional and now supervisor, Chele wears a lot of hats, so as she works with peers, they share stories. As they are venting, she’s taking on their emotions and it’s important for Chele to be able to expel that with another support person for herself. Chele was talking to her therapist talking about how she felt like she was losing her mind because she was hearing voices and she was trying to block them out. Her therapist told her to record what she’s hearing or write to it down. As she’s working as a system partner, a Mom, or a resource person, Chele said that as she’s talking, another ‘hat’ will step in and give her the answer.

Her inner voice was giving her the resources that the other hat she was wearing required in that role. Chele was trying to suppress it, but her therapist encouraged her to realize that her brain is constantly working, and information is coming to her from all of her different support roles. She will now jot down notes as these ideas come to her when she’s in her different roles.

Setting Boundaries

Chele talked about the boundaries she has to navigate. It’s about learning how to respect space–especially during conversations–which she does in mock sessions with her children that included writing down your thoughts so that you can wait until it’s your turn to talk and then say what you wanted to say. Many people say that autistics talk and talk and don’t let you get a word in. Doing a back-and-forth is a skill, she emphasizes. She uses the ping pong example and how she’s waiting for the ball to come, figuring out how to position herself to hit the ball back, similar to a conversation. Dr. Ira Glovinsky also used the ping pong analogy, in the context of back-and-forth interaction with children.

Even now with peer coaching, Chele teaches people how to set boundaries. People treat you the way you teach them to, she says. If someone pushes, you can push back, otherwise they will push further and set the boundary for you. She also teaches this to the young adults she works with as part of Navigating Safe and Healthy Relationships. When our children are younger, we want them to be communicative and social with others, but we also need to realize that they will become young adults who will need to self-advocate and set boundaries. 

Chele teaches her son and others how to date intentionally, especially with diagnoses. If you trigger each other in a dating relationship, you have to know how to de-escalate yourself and then de-escalate with your partner, including taking preventative measures. You can also identify social cues and be able to say when you’re not comfortable. Chele wants them to know that is ok and they can still have integrity and dignity.

Validate Another’s Perspective

Chele also had an example of when an autistic young adult had the opposite thing happen where the he was not communicating what was happening. His caretaker was making assumptions about it, and not presuming competence. Chele was able to meet the young adult where he was at and was able to find out that the individual wasn’t drinking water because he feared that the water filter wasn’t changed, and that he wasn’t eating because he didn’t know if the caretaker had washed their hands. Chele said this individual had very logical reasons for his behaviour, even if a bit obsessive with regard to cleanliness.

Chele says that you always have to validate what individuals say, even if we don’t see or understand what they’re saying–even if it’s not real, because it’s real to them. We don’t want to downplay what’s going on with them. Chele pointed out that when we order a burger at a restaurant, we don’t know if a fly landed on it. Even if someone saw a fly land on their burger and chooses to eat it anyway, it’s not right or wrong, necessarily. Some people are more cognizant of details than others. It’s an individual preference. Chele said that we can’t make people feel that their perspective is wrong.

Staying in Your Lane

Staying in the back seat and maintaining our ‘glam’, Chele continues, we have to make sure that we don’t co-parent with our children. Chele’s responsibility as the ‘glam’ mother is to love the grandchildren and support her children and their families. It’s her children’s responsibility to discipline and care for her grandchildren. She thinks of the traffic light. As long as we stay in our lane, we stay green, but when we start going into territory that’s ‘iffy’, now we’re yellow: proceed with caution. If you’re still going forward with yellow, you will hit the red, and maybe you’re in a space you’re not supposed to be in. 

That yellow light is your warning to ask yourself if you’re staying in your lane and if you’re maintaining your ‘glam’, Chele explains. You have to ask yourself that question and pay attention to your child’s cues. If her daughter invites her to attend an appointment with her grandchild and their supports, Chele has to follow her daughter’s cues to support her, and to ask permission versus just speaking her mind. We’re so used to telling our children what to do, Chele continues, but she has to respect her daughter’s position as an adult now and ask permission to share her opinion with her.

A New Take on Fight, Flight, or Freeze

Chele points out that she also has to set an example for her children. If they’re out and someone makes a comment, Chele wants to set that example to show that you can keep your ‘glam’ because our children might be quick to defend. She will smile and thank someone who makes a comment for their interest, but reassure them they’re ok. Chele changed the narrative of fight, flight, and freeze for herself. She will use her words wisely to fight, versus using her hands. In some situations, she doesn’t need to run to put out every fire. She’ll let the younger ones take care of it. She will navigate when to move in. She’ll freeze a lot more now, too, rather than run to fix things, high on adrenaline. Now she’ll freeze and wait for the opportune time to step in.

Maintaining your ‘Glam’

To our ‘glam’ parents, Chele announces, first and foremost, maintain that ‘glam’. Don’t let your children or grandchildren push you to a space where you can’t be glamorous. It’s ok to step back from a situation and collect yourself. We learn how to empower others with what we say, and we want to drop ‘gems’ now when we speak. We want our ‘blows’ to land by being cognizant of what we’re saying and how we’re presenting ourselves, Chele continues. Sometimes it’s ok to freeze and wait for the opportune time to jump in. You don’t have to move when everyone else is moving. Maintain your glam, she insists. To me, ‘maintaining our glam’ is about maintaining our state regulation. We talk about balancing our Functional Emotional Developmental Capacities (FEDCs) with the person we’re interacting with, and we can do this with our children, too.

Thank you to Chele for sharing her insight and wisdom–all of her ‘gems’–in this new phase of her life as a ‘glam’ mom! I hope that you learned something valuable and will share it on social media. 

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

Thank you to recording artist Ayria for the intro/outro song permission.