June 30, 2022
by Jen
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Following My Daughter’s Lead…With Some Help

I had a full circle moment last week following a short-notice, urgent Individual Education Plan (IEP) meeting for my high school aged daughter. I had just helped communicate her wants and needs to her team and to shape a vision for her next three years. We had made drastic changes that were long overdue. To prepare for this meeting, my daughter and I had shifted our approach. It reminded me of another big shift over a decade ago.

From the moment of my daughter’s autism diagnosis, I was given a complete alphabet to-do list: OT, SLP, ABA, PT, IEP. In my desire to get her the support and tools she needed to navigate the world, I never stopped to think about what she wanted or to ask, “are these options right for HER?”. We joined the waiting lists and started therapies as soon as possible. So, for a short while, my toddler had an almost full-time job of going from one appointment to the next. She began refusing to go to most things except for music, swimming and art. It took me a few months to understand that she was telling me what she wanted to do, what she needed to do.

So, we shifted our approach. I followed her interests and strengths. She grew happier and more confident. Over time, we added massage therapy and music therapy. We made other shifts through the years. We let go of physical therapy for swimming lessons. We added mini adventures in our metro area: amusement parks, llama walking, and thrifting. Moods improved; friendships formed. I discovered that, when learning feels like play and adventure, and with visual supports, my daughter is completely invested.

Fast-forward to a few weeks ago. During a night of worrying-about-her-future-induced insomnia, I searched the web (a parent’s strongest tool and, sometimes, nemesis) until I stumbled across a LifeCourse Guidebook. I recognized it immediately as a game-changer for my parenting. You see, I used to say autism parenting doesn’t come with a map. But I found a map! The LifeCourse visual tools could help me bring my daughter’s voice to the center of decision-making for her future! I drew on the materials to create questions and art projects that helped my daughter communicate what she wanted (and didn’t want) in her journey for life. She added her voice as the most important advocate for her future. The visual tools helped us expand our thinking to include mental, physical and social health.

Walking out of this recent IEP meeting, I smiled. I realized that, through her self-advocacy, my daughter called this meeting and drove the changes we made. As a result, she is going to a different high school in the fall. Her closest friends go to the school she’ll be attending. She’ll see familiar staff. She missed that desperately this past school year. She’s been communicating in her own way this entire time! It was the way she communicated via the visuals, prompts, and projects that helped me figure out what she needed and wanted to thrive in her next years of school. With some help shifting our approach to center her wants and needs, it all seems so obvious!

I wish I would have found LifeCourse tools earlier. I am so grateful I found them now, when our school struggles were really spiraling. We now have a map that we can revisit, a conversation that we can continue as we navigate (with my daughter leading the way, of course). Perhaps, this might be a “map” you were hoping to find too. Spare yourself the web surfing and start with this great resource:  LifeCourse Guidebook for Families. More information, an overview, and fillable PDF tools: https://disabilityhubmn.org/for-families.

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June 30, 2022
by Beth
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Oxygen Mask Episode 27: Autism and Down Syndrome Dual Diagnosis

This conversation explores the dual diagnosis of autism and Down Syndrome with guests Ashley Olthoff of the Down Syndrome Association of Minnesota and Marcy Rede, a parent of a young adult with the dual diagnosis. Ashley helps us understand how traits of individuals with Down Syndrome can overlap with autistic traits. Marcy describes how the parenting path she thought she was on with her daughter diverged and led to her daughter’s autism diagnosis. Marcy thoughtfully describes her daughter’s “in-between place” in the disability community.

Show Notes

National Down Syndrome Society page on dual diagnosis and related resources

When Down Syndrome and Autism Intersect. Froehike, R.N., Zaborek, Robin. Bethesda, MD: Woodbine House. (2013)

Down Syndrome – Autism Connection

Down Syndrome Association of Minnesota (DSAMN) where you can find Ashley Olthoff.

DSAMN’s Autism and Down Syndrome – Minnesota Facebook Group where you can find Marcy Rede

Acknowledgements

This podcast episode was made possible thanks to a grant from the Minnesota Department of Human Services.

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June 24, 2022
by Beth
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Oxygen Mask Episode 26: Visualize your resources

In this second episode with Shannon Andreson, we go deeper into reframing summer in terms of resources. We discuss two more LifeCourse tools that help visualize and communicate our own or our kids’ supports, connections, and strengths. Don’t miss the links and examples in the show notes!

Show Notes

Beth’s YouTube video on the support star and schedule.

Example: Beth’s Integrated Supports Star. Note: The underlined items are those that “fell off” during the pandemic and could be resumed if doing so would be supportive.

Wait a minute, what is LifeCourse? We’ve talked about it on the podcast before, but it’s been awhile. Check out Oxygen Mask Podcast Episode 20: LifeCourse Tools for Planning and Advocacy to learn more.

Disability Hub MN links to LifeCourse

Acknowledgements

This podcast episode was made possible thanks to a grant from the Minnesota Department of Human Services.

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June 23, 2022
by Beth
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Oxygen Mask Episode 25: Reframing summer

Our guest, Shannon Andreson, is a parent of a young adult on the autism spectrum and leader in education and autism advocacy. She helps us shift our thinking about summer. For many special needs families, irregular schedules and long summer days can be daunting. But Shannon’s reframing helps us see summer’s flexibility as an invitation to build support and independence and to recognize resources close at hand. In this conversation, we highlight a visual tool that may help you reframe to see structure and abundance in your day-to-day. Don’t miss Episode 26 for the second part of this conversation with Shannon.

Show Notes

Charting the LifeCourse schedule tool (bottom of page). Note: The schedule is nestled into a group of tools related to respite, or small breaks for caregivers throughout the day. You can use the schedule to illustrate your own day (and small chances to rest) or the way your child spends his or her time. Caregiver respite is a huge area of need and a rich area to explore with LifeCourse tools. Communities Engaging Autism hosted two events in Spring of 2022 on this topic. We’d love to connect with you to walk through possibilities and resources for finding small moments to put on your own oxygen mask on. for your family. Connect with us at info@cea4autism.org

Wait a minute, what is LifeCourse? We’ve talked about it on the podcast before, but it’s been awhile. Check out Oxygen Mask Podcast Episode 20: LifeCourse Tools for Planning and Advocacy to learn more.

Disability Hub MN links to LifeCourse

Acknowledgements

This podcast episode was made possible thanks to a grant from the Minnesota Department of Human Services.

April 28, 2022
by Shannon
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Creating Space for Caregivers

Over the past few years we have all learned, collectively, how to do things differently. Often this is hard because it involves shifting our mindsets to see and experience resources, supports and space in a whole new way. This is where we all entered into the recent workshops – Creating Support and Space for Caregivers – which highlighted Lifecourse tools for parents.

Exploring respite resources for families that are accessible was one theme. It has been increasingly difficult to find respite providers who are a good fit. Using the Trajectory Tool specifically to problem solve around what respite would look and feel like for your family was helpful, but also frustrating for some, especially for those who haven’t experienced formal respite or don’t see options available to them. Not knowing where to start and feeling overwhelmed is common and difficult. Starting in the “What We Don’t Want” box is often helpful. Many parents found it easier to back into the “Vision for a Good Life” section through knowing what they and their child don’t want.

Common themes/barriers to true breaks from caregiving that emerged were:

  • Lack of qualified/connected programs within the community
  • Caregiver being responsible for plans and/or education and consequences if it doesn’t go well (clean up)
  • Not knowing where to turn for outside support
  • Lack of understanding within extended family

The group also discussed shifting what we see as resources. Often we look outside ourselves and our family when we think of resources. Stress was released when we began to think of ourselves, our partners/extended family and even our child as resources. And we have immediate access to them. Starting from a place that sees what is already there, allows us to fill in the gaps with our family’s strengths and assets.

Examples participants shared of doing this:

  • respite provider who had the right mix of creative activity ideas and sensitivity to a child’s needs
  • person willing to play one-on-one with one child to give the parent space to focus on their other child
  • person who always says “yes” to FaceTime invitations to play Guess Who or BattleShip
  • friend who drops off boxes of Tinker Crates that become rainy day rescue kits
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April 22, 2022
by Beth
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Oxygen Mask Episode 24: Insights from a care coordinator

In Episode 24, Beth interviews Tara Mahin, a Care Coordinator in the pediatric practice that cares for both of Beth’s kids. The two discuss ways care coordinators can help parents of medically complex kids, including parents raising kids with autism. The conversation illustrates how a little help goes a long way in helping families navigate systems more efficiently, lending continuity to care, and providing and a “warm handoff” among providers. Listen in and check out the show notes to learn more about accessing care coordination.

Show notes:

Find Health Care Homes at the Minnesota Department of Health’s website. Health Care Homes include care coordination as part of their services.

Tara Mahin is a Care Coordinator at South Lake Pediatrics in the Twin Cities metro area in Minnesota.

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March 1, 2022
by Beth
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Oxygen Mask Episode 23: Letting things go is hard…and worthwhile

Beth and Tera talk about being intentional about our commitments. They share the process of Tera’s decision to step away from co-hosting the Oxygen Mask Podcast. Making connections to raising children on the autism spectrum, they surface opportunities that have come from doing less. Listen in and be part of this warmhearted “goodbye and thank you” to Tera.

Show Notes:

Consider joining Communities Engaging Autism’s monthly Parent Growth Circles where we support one another in putting our oxygen masks on first (and not swatting them away).

November 24, 2021
by Beth
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Kids’ Packing Checklist: Building independence ahead of travel

Are you hitting the road or taking to the skies for the holidays? I have a tool that might help you share the mental load of preparing for travel. Here is my kids’ Packing Checklist. Here is a version with pictures instead of words. This has been an awesome tool to build both my kids’ independence and sense of responsibility.

This checklist has seen lots of tweaks borne of travel mishaps. Once, I forgot to add pajamas to the list, which made settling in on our first night really hard. Another time, a child who’d jumped in the car after playing in the yard arrived to our summer lake weekend barefoot and without a single pair of shoes packed. Most recently, one of the kids followed the checklist marvelously to pack his bag BUT said left the bag sitting on the bedroom floor—something we didn’t realize until we were hundreds of miles from home. So take advantage of our fumbles, and print yourself a copy with text or with pictures.

TIPS:

  • Slide the checklist into a clear page protector/binder sleeve. Use dry or wet erase markers to add quantities next to listed items, add items, and provide notes, etc.
  • Place the suitcase and the list in your child’s room a few days before travel. The concrete reminder lets them know that the task of packing is ahead. You may want to do this on a weekend so there’s time to support if a) your child jumps right in or b) anxiety or confusion arise.
  • Set realistic expectations. Depending on your child’s ability and experience, you may need to pack together, referencing the list. Maybe your child can pack on his or her own but could use a suitcase check with a parent or sibling before zipping it closed.
  • Bring the checklist and markers along on your trip. Use it as you pack to leave. Not only does this reduce the chances of forgetting things, but it may help ease the transition to departure.

As with many of the tools we share here, this checklist is helpful for all kinds of kids and adults too. Safe travels!

Email me at info@cea4autism.org if you’d like an editable version of this checklist.

Click to access PicsMy-Packing-List.pdf

 

November 17, 2021
by Beth
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Oxygen Mask Episode 22: Sy & Maychee share perspectives on, hopes for autism acceptance in the Hmong-American community

Listen to part two of the conversation with Sy and Maychee. Drawing from experiences and challenges they shared in Episode 21, Sy and Maychee describe their hopes, celebrations, and perspectives as members of Minnesota’s Hmong-American community and the autism community.

Sy mentioned his involvement with the Multicultural Autism Action Network (MAAN) as well as the Supporting all Abilities Welcoming All Voices (SAWV) Facebook group. Part of his work with MAAN included a rich, personal conversation he had with Maychee and shared on YouTube. Check it out here.

Hear’s a brief feature on Maychee from Hmong American Experience.

Acknowledgements:

This Oxygen Mask Episode was made possible by an Family Connections Innovation Grant from the MN Department of Human Services. Communities Engaging Autism is grateful for this financial support.

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October 6, 2021
by Beth
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Oxygen Mask Episode 21: Sy & Maychee discuss autism in the Hmong-American community

Beth is joined by two guests from the local Hmong-American community. Sy, reflects on his educational path and the supports he has or would like to have in order to live well as an adult with autism. Maychee, a mother of a young child with autism, describes pursuing supports for her son. She navigated her family’s reservations that were rooted in stigma and lack of understanding.

Acknowledgements:

This Oxygen Mask Episode was made possible by an Family Connections Innovation Grant from the MN Department of Human Services. Communities Engaging Autism is grateful for this financial support.