Parents and caregivers of Autistic children and teens often find themselves consumed with school meetings and communications, managing therapies, and preparing for every eventuality. These actions are important but can quickly overshadow daily life and family dynamics. If the focus is solely on identifying challenges, pushing for supports, and skill building, there is little space for you to just be with and enjoy your Autistic child for who they are, both at home and in the world.
Before Jenna O’Donnell saw this with the families she works with every day at AANE, she experienced it in her own life as an Autistic mom of an Autistic son. With her advocate and good friend, Karen Claudio, Jenna shares her experience and five steps to shift from constant anxiety to celebrating your child.
1. Know When You Need Help – One of the first steps is finding the right help when you need it. Identify the barriers that are consuming your time and energy, and reach out for support.
Jenna was already exhausted from years advocating for educational support before her Autistic son was officially diagnosed. The difficulty with the school escalated and Jenna felt overwhelmed. “I didn’t know what to prioritize. I didn’t really know where to begin,” Jenna said. “I was genuinely scared. I felt like this situation was no longer really about my kid. I just didn’t know where to begin to support him: how to get him the support that he needed in school, how to navigate insurance and persist with lengthy waitlists for the services that he needed outside of school, and how to get all of those people to communicate.”
Karen was the second advocate Jenna worked with and is also the mom of an Autistic child. Jenna feels Karen’s assistance was a lifeline. “Our job is to prepare and empower the parent or caregiver,” said Karen. “It’s really how to ask the right question so you can get what you need for your child.”
You can find support in many different ways, like connecting with the Special Education Parent Advisory Council (SEPAC) at your child’s school or joining an online forum or support group. Books and podcasts can also provide validation and information to help you figure out your own way forward with more clarity and confidence. Finding the right support is key to being able to reclaim space for you and your child.
2. Prioritize Goals – The list of issues to address may be long. Give your attention first to the things that are most important.
Karen helped Jenna diminish the overwhelm by helping her focus on one thing at a time. “I think sometimes as parents, we often think we have to do everything at once, and we don’t.” Karen explained. “It was a lot of conversation about what’s important and what we should prioritize.”
Instead of feeling the issues were crowding every moment, Jenna could hone in on what was important first.
3. Focus on Strengths – Paying attention solely to issues and challenges creates anxiety for everyone. Understanding and exploring a child’s strengths will not only support the child’s self-esteem, but might give you clues on how to harness the strengths to address the challenges.
Karen’s assistance played a pivotal role for Jenna in shifting focus to strengths and abilities. “I really try to make their child’s voice stand out – ‘This is what he can do, he’s really good at this,’ – and really building off what he’s good at,” said Karen.
“I think a lot of our experience as families is coming from a place of deficit,” said Jenna. “I was so stuck in this mode of having these negative meetings; every meeting with a provider was a reminder of all the things my son wasn’t presently doing. Our meetings changed when I realized I could control some of that. He has strengths, he has many things he can do. Let’s utilize those strengths as leverage to engage him.”
This plays a huge role in shifting focus at school and at home, fostering more inclusion and valuing the Autistic perspective.
4. Make Space to Enjoy Your Child – Whether it is through the child’s interests or with shared family activities, find ways to engage with your child that can allow you to dial back anxiety and overpreparation.
Now that Jenna is working with families through AANE, she reminds other caregivers not to lose sight of engaging with their children for who they are. “Nobody in the medical community says, ‘Enjoy your child.’” Jenna said. “They’re these incredible human beings and they have so much to offer. Your child should also get to know you for the amazing person that you are and what your personality is. We wear many hats as the parent of an Autistic child. We often focus our energy on our children and their friendships outside of the family unit, but I value my relationship with my child and want both of my children to know me at my core: my strengths and vulnerabilities, my likes and dislikes, but most importantly who I am outside of ‘Mom.’”
When Jenna gives this advice to families, they feel the same shift away from anxiety that she felt. “I share what I’ve learned often in a parent coaching session and I see them take a real sigh of relief,” Jenna said. “Nobody has given them the insight or the freedom in sitting back and being parents and letting the child simply be their kid.”
5. Celebrate it all! – Recognize your child’s growth and all they have accomplished, but first and foremost, celebrate the things that make them who they are.
Instead of always looking toward the next goal or milestone, remember to reflect and celebrate with your child on all of the things they have accomplished and the hard work they are doing every day. But also, if they are open to it, find ways that you can engage with them in their arena of interest.
Jenna related that one of her son’s interests was the video game Fortnite. Seeing how much their son loved the game, Jenna’s husband decided to play too. “He’d put on a headset and tell our son to jump on, which made him feel like a million bucks,” Jenna recalled. “My husband used that opportunity to check-in with our son in a very natural way. He would say, ‘So tell me about your day, Bud.’ And while playing the game together, he would drop in questions so they could connect naturally and with less pressure and focus on our son’s pragmatic abilities.”
When the new season of the video game came out, Jenna filled their son’s room full of Fortnite decorations and gave him extra time to play. “I told him, ‘I know this is important to you.’ This is like the Super Bowl to this kid. So I just try to engage in the ways that I really can to just show him I care about what interests him.”
Karen’s Autistic daughter really liked anime, and when she was old enough, Karen took her to Comic Con. “I’ve never seen this kid so happy in my entire life,” Karen reflected. “Is it my favorite place to go? Absolutely not. But she loves it. I do think a little goes a long way when parents can just say your interest is important, and it’s okay whatever it is.”
Reflections as an Autistic Parent
Like many parents and caregivers of Autistic children, Jenna realized that she may be on the autism spectrum and was formally diagnosed Autistic just six months after her son was diagnosed. She recognized that she could identify strongly with some of his experiences. “I know how he feels when he is misunderstood. I know it because I have experienced it and felt it to my core. That’s where our trauma comes from.”
She also sees opportunities to be open and honest with her son about her own autism as a way to keep the lines of communication open and to model self-advocacy. “I want my son to feel confident about himself and I want him to recognize sooner rather than later that talking about autism as a natural part of who he is, can remove the stigma.” Jenna explains, “By telling people about my diagnosis, I’m seeking kindness and understanding, but also as a late-diagnosed adult, I want to be a voice in our community that autism can look like this too.”
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Stories are shared with their family members’ permission.
Karen Claudio completed COPPA SEAT 2.0 in 2020 and is the founding owner of Charting Advocacy where she serves as a special education advocate. She is a former candidate for the Taunton School Committee and formerly served as co-chair for the Taunton SEPAC. Karen currently serves as the Southeastern Family Leadership Director since July 2021 and volunteers as a Special Education Surrogate Parent through The Federation of Children with Special Needs. In addition to her professional endeavors, she is the mother of three daughters, one of whom is Autistic.
Jenna O’Donnell, is an Autistic adult, parent of an Autistic son, and a special education advocate. Jenna is a graduate of the Mass Families Leadership Series and completed advocacy training with both Wrightslaw and Parent Consultant Training Institute of the FCSN. Jenna did not receive her autism diagnosis until much later in life and in turn, facilitates groups for women who are new to their diagnosis.