Parent Perspectives: Developing Resilience

PHOTO CREDIT: Pixabay

Episode 299

This edition of Parent Perspectives features Gina Baker, the mother of two kids in Utah. She has had many professional roles in the past including nursing and case management and her current focus is on raising awareness around supporting her Autistic child when he didn’t fit in any box and when professional services did not help. Her son is 15 and has high support needs, otherwise referred to as “profound autism” by many, and we’ll talk about that. She now does photography and has created a program for parents that focuses on parent self-regulation so that other parents don’t have to go through what she went through: extreme exhaustion, loneliness, depression, suicidality, frustration, and anger. In developing her resilience by taking care of herself, she was better equipped to care for her son and his needs.

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When Autism Parenting is Hard

I met Gina on Instagram and found that her posts connect with parents in a way that makes them feel seen and heard and I value that. Gina is so open with her experiences because when she was struggling and went to other Moms for support, all she heard was, “You’re strong. You got this!” She felt very alone and that something was wrong with her because no other parents were saying how low it got and how much they were struggling like she was. Another mother she recently connected with who shares similar experiences isn’t ready to be open because it’s very traumatizing, and Gina understands that. But in the hopes of being there for other parents who are feeling like she was, she has decided to be open about her experiences. Nobody truly knows what it’s like to walk in another’s shoes and we all are entitled to feel our own grief without comparing ourselves to others.

Episode Highlights

Here are some of the highlights of what Gina shares in this episode:

• Struggling is part of the process
• It’s very helpful to hear another parent say, “Me, too” when describing your own personal struggles
• Even when therapies weren’t working out, she kept with them longer than desired to have a bit of a break
• At speech/occupational/horse/music/ABA therapy sessions she would hear, “He won’t engage,” or, “He’s too aggressive” and insurance wouldn’t justify the coverage due to lack of progress. At some point, they ran out of money and were just discouraged.
• School would call saying he had a fever, only to find when she would pick him up that he was “fine,” left to wonder if they didn’t just want him to go home.
• Her son didn’t fit in anywhere and had major gastrointestinal issues, randomly vomiting, never having a normal bowel movement and having severe reflux. He had weird eating patterns. Gastro specialists wouldn’t find anything wrong. They’ve been to geneticists, epidemiologists, and to the ER several times. Psychologists didn’t help. Medications didn’t help.
• Going through all of this makes it very difficult to relate with Autistics with lower support needs. They lost most of their friends. Family didn’t understand their situation. Nobody sat near her family at church.
• Her son has extreme aggressive meltdowns, has scars from biting himself, and Gina has scars from being assaulted. Her sister described her son’s scream as sounding like someone had died.
• Gina wants therapists to know that saying or implying that they expect parents to be perfect and be on top of everything was not at all helpful to her.
• Gina felt completely hopeless and helpless after the birth of her daughter, living through post-traumatic stress on a daily basis. She found the book Loving What Is by Byron Katie followed by other books that made her believe that if she thought about this enough, she could figure it out.
• In her program for parents, Breaking Through the Burnout, she created the RISE system where the “R” is for “Reframing” your thinking to lead to intentional action: Not waking up in dread, realizing that she’s only human and it’s normal to “mess up,” thinking about what she can do better next time and to find the patterns in occurrences and label them.
• “I” is for “Invest in you.” Gina talks about how important it is to take care of yourself as a parent, such as finding something that reminds you of who you are. For Gina, it’s photography.
• “S” is for starting to dream again: “Shape” your past. Your reality doesn’t have to look like everyone else’s.
• The “E” is for “Engage, Enjoy” where you take time to experience moments of joy, whether it’s calling friends, enjoying a cup of tea on her deck, or having a dance party in her kitchen with her son.
• Before “RISE,” Gina’s parenting thermometer was at the top, so if her son had a meltdown, everything would blow up. Her parenting temperature is now lower, so she has a lot more room before “boiling over.”
• With her regulation better under control, she began to notice what was happening with her son and was better equipped to find resources that finally began to help.
• Parents always want to know how to help their children, but Gina says if you don’t take care of yourself, there’s nothing left of you to help them when you’re in survival mode. She started shifting from fear to what’s working.
• There is a lot of support online but if something isn’t feeling right or people are typing something that is cruel or not helpful, keep seeking others who are supportive, Gina says. They are out there.

Please see this article with links about how thoughts of suicide is not uncommon in parents of children with disabilities.

You can check out Gina’s FREE program, Breaking Through the Burnout.

Thank you to Gina for sharing the tools with us that she used to find her resilience in parenting an Autistic child with high support needs. I hope that you found it valuable. If so, please consider sharing this episode on social media.

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

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