An autism diagnosis can be overwhelming, even if you’ve suspected something before doctors confirmed it. Then as your child grows, thinking about their future can become all-consuming.
Metro Detroit Mom Shell Jones knows all the feelings and the worries. Her son, now 20, was diagnosed with autism at 2 1/2.
The way that you view things will determine the actions that you take, she told us in a recent interview. Feeling unsupported takes a toll emotionally, physically and mentally, she says.
“The old adage, ‘when your life gives you lemons, you make lemonade’ so, OK, they’ve got this diagnosis. It’s not the end of the world. It’s not terminal. You have to think positive.”
It’s an attitude she’s bringing to empower other parents at this year’s Living With Autism Workshop, presented by Henry Ford Health and sponsored by Spark Center for Autism, Autism Alliance of Michigan and Kaufman Children’s Center. Jones, creator of the Play-Place Autism and Special Needs Center, is one of the speakers at the Q+A session on day 2 of the Nov. 6-8, 2023, event.
While there are so many takeaways parents will get from attending this year’s event, we’re sharing five. Remember, a ticket to the Living With Autism Workshop includes the daily recordings so if life gets too busy to attend live, you’ll still get all of the videos to watch on your own time when it’s most convenient for you.
1. IEPs that work (and strategies when they don’t)
Navigating school and the IEP process can be stress-inducing for parents, even if your child’s school and teacher is completely on board. That doesn’t always happen. If schools and teachers are not on the same page with parents, it can lead to anger, frustration and even lawsuits, something no one wants to encounter.
Luckily, help is available.
Melissa Maye, Ph.D., from Henry Ford Health, will share the basics of starting an IEP with your child’s school as well as tips to make sure you have communication and collaboration with your child’s special education team. Her session, IEPs 101: Developing the Best Educational Path for Your Child, is set for 11:45 a.m. EST, Nov. 6.
However, as much as parents want the best for their kids, sometimes communication breaks down and conflict arises. That’s where Special Education Mediation Services can help students, parents and educators move forward. Find out how the process works and how you can get help at no charge in a session by Beth Kohler and Cheryl Levin of Special Education Mediation Services, IEP Dispute Resolution: How to Talk About When Your Child’s Educational Plan Isn’t Working, 11:45 a.m. EST Nov. 7.
2. Top ABA therapy tips
Every parent whose child gets an autism diagnosis wants to do everything in their power to help them have the best life possible. But it’s easy to get overwhelmed with all the therapies and options that seem to come at you from all directions.
For parents just starting out with an autism diagnosis, Sarah Peterson, BCBA, and Taylor Stempnik, of Henry Ford Health, will answer parents’ biggest questions and offer an insider view of Applied Behavior Analysis (ABA) and assessments parents may encounter. Their session, ABA 101: Fundamentals of the Premier Autism Therapy, is at 10:30 a.m. EST Nov. 6.
But what about when kids get older? Amanda Prater, BCBA, LBA, and Lindsay Muncey, BCBA, LBA, of Kaufman Children’s Center, are ready to answer questions about moving children to a less restrictive environment in their session, Moving Outside the ABA Bubble: Transitioning from a Comprehensive ABA Program, at 10:30 a.m. EST Nov. 8.
3. Ways to give people with autism a voice
When our kids with autism grow up, we want to make sure they are as independent as possible. To do that, we have to learn to support them in making their own decisions and to advocate for what they want.
That’s what Kaiden Tolbert, a young adult who has an Asperger’s diagnosis, discovered. He found that if he didn’t advocate for himself, some activities he enjoys would not be open to him.
Tolbert, Center for Youth Voice and Youth Choice youth ambassador, along with Mary Shehan of the Michigan Developmental Disabilities Council, walks you through what supported decision-making is and isn’t (spoiler alert: it respects and honors people’s right to make life decisions!. In their session, Supported Decision-Making: Giving Autistic Adults a Voice, they will share the options people with intellectual and developmental disabilities have and ways parents can support them when they are making their decisions. Their session is set for 1 p.m. EST Nov. 7.
4. Health care changes as they grow up
Did you know the transition from a pediatric to an adult approach to health care should begin as early as age 12? Sound too early?
Don’t worry. Henry Ford Health Center for Autism and Developmental Disabilities diagnostic team members, Dr. Jannel Phillips, pediatric neuropsychologist, and Dr. Tisa Johnson-Hooper, pediatrician and CADD medical director, will share a comprehensive health care transition process to help you have all the tips you need in their session, Health Care for the Whole Child: The Benefits of Comprehensive Primary Care for Youth with ASD, at 1 p.m. EST Nov. 6.
At 11:45 a.m. EST Nov. 8, parents will also learn about establishing a medical home, the need for well-child visits and the detection of conditions associated with autism. Dr. Jacqueline Metz, DO, of Henry Ford Health, will share tips with families in her session, Health Care for the Whole Child: The Benefits of Comprehensive Primary Care for Youth with ASD.
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