Going the Extra Mile(stones): A Look at Special Needs Parenting and Autism – Part 2

In Part 1 of this two-part post, I explored what it’s like to walk the line between two worlds – parenting and special needs parenting – and shared local resources for parents with any concern about their child, with or without a formal diagnosis like autism.

Parents of children with special needs go the extra miles. Not a mile. Many miles. And while the journey may be filled with more bumps, roadblocks and detours than a typical one, the destination can be every bit as, if not more, beautiful.

Attending last month’s Milestones National Autism Conference opened my eyes to the #SpectrumofPossibility. The 16th annual event was the largest yet with over 1,200 professionals, family members and individuals with autism in attendance and featured nearly 100 sessions on topics ranging from new diagnosis tips, picky eating and autism in the media to self-care and dating. After two days of workshops and exhibitor visits, I left feeling informed and inspired.

Here’s what I learned to help any parent go the extra MILES:

  • MMeet and Model. Relationship-building was a common theme. Make connections. It’s not just what you know. It’s who you know. As an autism mother and teacher, presenter Jennifer Krumins of Autism Aspirations reminds us knowledge is power, but it’s not enough. Collaboration is key. She asks, “what attitude are you modeling for your child?” and stresses hope, optimism, persistence and collaboration not anger, hostility, fear or blame. Conferences are a perfect place to meet like-minded people and immerse yourself in a subject, but don’t stop there. I drove a stranded speaker to the airport and followed up with the moms I met for lunch, gaining extra insight from others’ experiences. You’re not alone.

 

  • IIEPs and Information-sharing. Individualized Education Plans (IEPs) for children are like blueprints for houses. According to Krumins, we all wish happiness and autonomy for their future and must look ahead even if it hurts. Emotions get mixed in, so keep facts and data on file. Include the child on the IEP team. Ask what he or she wants to learn this year. Prepare, organize and actively participate in the process. Put all requests and communication in writing. Also, share information across providers and educators so everyone aligns for common goals. An “about me” sheet or more extensive “portrait of a student” working document can help new teachers get to know your child.

 

  • LLearning vs. Learned helplessness. Keynote speaker Paul Kluth, an educator and expert on inclusive classrooms, urges us to help children learn by using their interests or favorites as tools for including, supporting, calming and encouraging them, not only as rewards. Incorporate fascinations into lessons in creative ways. A food lover’s schedule can be a menu of the day, for example. Additionally, experts advise focusing on strengths, setting expectations and designating responsibility. Resist the urge to always step in when your child asks for help to avoid dependence or learned helplessness. Children learn through play, but you may have to teach them how to play. Whether you select an ABA approach (the only one addressed in the session on this topic) or take the child’s lead (à la the PLAY Project or Floortime model), it’s important to play at the child’s developmental level.

 

  • E Introduce your child to many experiences. Don’t hide at home in fear. If your family has sensory issues, download the KultureCity app to find sensory-inclusive places near you, and reference Milestones’ comprehensive calendar of sensory-friendly events and activities (at local museums, jump parks, etc.). If you’re planning a trip, use this travel tip toolkitto prepare for smooth travels. However, make the most of time at home and in your community. Speaker April Giauque, a special education teacher, writer/blogger and mother of 9 children (4 of whom have autism and 2 who are deaf), involves even her youngest in everyday household activities like cooking, cleaning and laundry as “chore therapy,” since there is no better way to generalize skills for life than to put them to practice. These experiences, along with community service (cleanup efforts, etc.), offer lessons in language, modeling, social skills and more. Break down tasks into smaller steps, create visual aids and/or film it for your child to watch.

 

  • SSiblings, Self and Sleep. It’s easy to focus on the child facing challenges, but less attention and different treatment leaves siblings at higher risk for emotional, behavioral and relationship concerns. On the positive side, siblings may develop greater empathy, independence, maturity, compassion and responsibility at a younger age. Speakers from the Cleveland Clinic Center for Autism stress the importance of talking to siblings in age-appropriate ways after first processing your own thoughts and feelings. Access sibling resources and facilitate relationships using common interests, short activities and sibling coaching. However, remember to make time for yourself. Take a lesson from flight safety. Before helping others, you must first put on your own oxygen mask.

Sleep helps everyone function at their best, but sleep disorders occur in 50-80% of children with autism compared to 9-50% of typical developing children, according to experts from Akron Children’s Hospital. They advise bedtime between 7 and 9 p.m., consistent routines and, if a nap is needed, try not to exceed two hours. One hour between noon and 2 p.m. is ideal. They also addressed medications, night terrors and getting your child to sleep alone. If sleep is an issue for you or your child, seek professional help.

When we meet along this journey of parenting, please share the road nicely. You don’t know what it’s taken for some of us to get here or what lies ahead.

Author’s note: I received complimentary conference registration from Milestones Autism Resources in exchange for sharing my experience on this blog.

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Lindsey Geiss

Lindsey Geiss is a public relations and crisis communications planning professional turned stay-at-home mom and writer. When she’s not handling local early childhood PTA publicity, she’s getting crafty with the kids, researching allergy-friendly toddler snacks, or finding and wrapping that perfect gift. Lindsey is a shoe-lover, jump rope enthusiast and recovering perfectionist. She lives on the West side of Cleveland with her husband and two young children.

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