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A Baker's Dozen: 13 Key Tips for Parents in the Autism Community

This is a post by Douglas Baker, a national speaker, consultant, advocate and California specialist for the Autism and special needs communities. As a parent of an adult son with Autism, he has over 20 years of experience guiding and navigating families through the lifespan of inter-connected services, resources, agencies, professionals and planning demands.

I call these my Baker’s Dozen – This is in no way a complete list, and each and every family’s situation will have nuances. Remember, it all can’t or doesn’t need to be done at once:

  1. Get a proper diagnosis and assessments early. These are the building blocks for successful EI, IEP’s, ITP’s, ongoing evaluations, services, support, benefits, management and living options.
     
  2. Accept your child. Accept yourself. Accept this community There are hundreds, even thousands of us close by. Just like you, we all have many of the same feeling, needs, challenges and concerns… trying to understand, learn more, live a life, rebuild our dreams and thrive.
     
  3. Get a special needs advisor in your inner circle We get it. We are your “air traffic controller” that coordinates your landings, gates, baggage and safety. We are here to works with your whole picture as it changes with services, resources, legislation, professionals, legal, financial and sound strategies specifically for your family’s needs.
     
  4. Stand up for what you know are your child’s needs and be willing to fight them. Hiring experienced professionals may and will most likely be necessary. If you have the financial means, make the schools, agencies and organizations responsible provide these resources and services, and help clear the path for those less fortunate.
     
  5. Make strategic financial, special needs and legal plans This is important to do and have in place. Life insurance is not the “end all” answer to planning. Attorneys sell trusts (estate and special needs) and planning, but do they know your whole picture ? Do they understand, specialize and do special needs work all the time ? Go back and read # 3 above… Be prepared for what’s coming and expect changes to happen.
     
  6. Create an Instruction / Care Guide / User manual – “Letter of Intent” Clearly identifies your child’s / member’s skills, traits, likes, routines, preferences and more… This provides a road map to new service and care providers, as well as guardian transference. Today’s electronic versions of this can be easily updated and stored with various other important documents, pictures, video’s and recordings.
     
  7. Get the “Basics” covered – Will, Estate Plan and Special Needs provisions Probate is the very expensive answer to not being prepared. The last thing you want is some courts and court appointed lawyers spending tens of thousands (or significantly more) of dollars making decisions (probate) far and away from what you may have wanted or intended.
     
  8. Be willing to ask for help. Don’t go at this alone. There are associations, parent groups, organizations and foundations to help you find some of the advocates, services and professionals that can be of immediate help. There are some free service and legal organizations available for those families that qualify.
     
  9. Support your Special Needs community members wherever possible First Given the choice, find, use and support the businesses, services, professionals and organizations that are special needs owned, managed and operated. This is how we serve, support, grow and give back to build a stronger and self-sustaining special needs community. Redirect your financial and patronage support from the large “badly behaving” banks, corporations and institutions that don’t support our communities.
     
  10. Pay attention to the entire Family’s needs Don’t get lost in the special needs “vortex”. Minimize the lopsidedness as much as possible, and make time and events for the other non-special needs family members (significant other and children).
     
  11. Remember “ME time” A healthy happy parent is much more valuable to their significant other, their family and their special needs child. Respite and separate quiet or fulfilling time and events are okay here, and actually necessary.
     
  12. Show appreciation to the people and professionals that are instrumental in helping your special needs child progress forward, invaluable to your family and/or invaluable to your needs.
     
  13. Are you in position to make active Charitable Contributions? Making contributions during your life allows you to see and participate (as you care too) in community’s benefits of your good will. 

About DougDouglas Baker is a national speaker, consultant, advocate and California specialist for the Autism and special needs communities. As a parent of an adult son with Autism, he has over 20 years of experience guiding and navigating families through the lifespan of inter-connected services, resources, agencies, professionals and planning demands. He is an educator, writer, and community catalyst, and one of the few nationally that understands and integrates the legal and financial strategies around these lifestyle needs and challenges. Doug spent two decades as a technology sales management executive implementing process and infrastructure improvement systems into some of America’s largest organizations. 

Douglas O. Baker - Special Needs Advisor – Lifespan Guidance, Navigation and Planning
Phone: 949.300.5035
Email: douglaso.baker@yahoo.com 
Facebook: www.facebook.com/specialneedsadvisor