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Home > Resources > You Get More With Sugar Than You Do With Vinegar… Notes on Advocacy for Parents of Children on the Spectrum

You Get More With Sugar Than You Do With Vinegar… Notes on Advocacy for Parents of Children on the Spectrum

June 15, 2017 By Functional Living Skills

By Lisa Squadere-Watson, Parent
used with permission from Different Roads to Learning www.difflearn.com

Everyone has a story about how their child came to be labeled with an autism spectrum diagnosis. Most are heartbreaking tales that make any parent shiver. However, one of the most important topics that should be discussed is how we as parents can proceed to traverse the maze surrounding the massive amounts of information and tap into people who share their knowledge of what has worked for them.

The following are tips and resources my family has found beneficial. I hope that they will aid you in becoming a successful advocate for your child.

EDUCATION:

  • Education is not only the responsibility of the educators. Parents are their child’s best teachers. As the parent, you know what your child’s interests are better than anyone and you can assist the school by providing the materials necessary to reward your child to the best of their ability.
  • Be an ACTIVE participant in your child’s team. Don’t expect school to know all or be able to solve everything share with them what you do at home and SHOW them you are involved and dedicated to assisting them.
  • Know your rights and the rights of your child. Understand what you are reasonably able to request and what is beyond the scope of what school can provide.
  • Practice what you preach…once you find the therapies and methodologies that work for your child, EMBRACE them! Use them everywhere!
  • Seek out the best in everyone who wants to work with your child. Compliment them, build a rapport with them, and make them understand the importance of their interactions with your child and how meaningful they are.
  • Confrontation: it’s inevitable, everyone has an opinion. Don’t be afraid to disagree. The goal is progress for the child, NOT what’s in the best interest of the school or home personnel.

MEDICAL INSURANCE/MEDICAID WAIVER:

  • Engage your child’s physician to work with you in diagnosing co-morbid conditions and seeking therapies that may assist to alleviate them.
  • Tap your insurance coverage to assist you outside of the school environment to engage your child in meaningful therapies and programs that will enhance their overall wellbeing. Many families use their allotments during summer months to avoid regression.
  • Many states now have mandated insurance coverage that spans across speech, ABA, OT, PT and other areas of interest. Learn your plan and your state’s rules.
  • When choosing a Medicaid provider, be sure the agency is positioned to enable you the maximum amount of assistance allowed. Don’t be fooled when you’re told there’s nothing available, you must insist on an exploration.
  • Seek to find what else is available in your community. Many plans are now being covered at the county and state level enabling funding for the development of functional skills in the home and community. These plans can foster huge outcomes and provide you with more than just respite services.

COMMUNITY:

  • Attend workshops and other government meetings about these issues to best inform yourself of what your child is entitled to receive.
  • Engage in conversations with your local representatives. They are elected to serve YOU. Many welcome the conversation as to how they can improve their communities and offer better services to children with disabilities.
  • Most communities now have support groups, local NFP’s and other groups that allow you the opportunity to learn more about what others are doing and have found successful. While the internet is now an extremely powerful tool, it is true human engagement that can effectively enhance your child’s opportunities to be a part of society,

PROGRAMS, PRODUCTS AND SERVICES:

From the onset of our son’s diagnosis, we sought tools that would help us help him. Different Roads to Learning was the first catalog I was given to access materials that would help. After 10 years and now having had the pleasure of meeting so many wonderful professionals and parents throughout the field, here is a list of items that we’ve found most useful:

  • The Assessment of Basic Language and Learning Skills–Revised (book and online)
  • Teaching Language to Children with Autism and other Developmental Disabilities (book)
  • The Assessment of Functional Living Skills (book)
  • The ABA training course by Maximum Potential (online program)
  • The Big Book of ABA Programs (book)
  • Picture This… CD
  • Video modeling by Watch Me Learn (DVD series)
  • SRA McGraw-Hill direct instruction for Reading and Math
  • Headsprout Reading (online program)
  • Relationship Development Intervention (RDI)
  • Verbal Behavior Targets (book)
  • Successful Inclusion for Students with Autism (book)

Lisa Squadere-Watson is a parent of two children and resides in upstate New York. She worked for 10 years as co-founder of a Not For Profit serving children with Autism in her area and also as an independent Marketing Consultant for Behavior Analysts. Lisa is known in the autism community for her advocacy and representation of many products and services that have helped thousands of children. You can reach out to her via email at lsquadere@aol.com or find her on LinkedIn.

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