TACA Talk About Curing Autism - Resources - Getting and Staying Organized

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Getting & Staying Organized

Having a child with autism is a lot of work. But you can make it a lot easier, effective and affordable by creating an organized system so that you can easily reference important documents as well as prioritize interventions.

Prioritize!

What are your child’s most pressing issues? START THERE FIRST! See New Parent Quick Start and Sample Checklist.
Know who you are talking to and what you want/need from them
Please read Managing Professionals and Appointments
Understand Who Pays for What?! and save your wallet for last!
Track your child's progress with a Daily Calendar and ongoing video taping.

Storing Your Child's Documents

Options: Binders, filing folders in cabinets and/or electronic files
Electronic: It can be a wise investment to purchase a scanner with a document feed so you can convert all your documents to PDFs. It is highly recommended that you create an archive (DVD or CD) to store outside of your home or use an archiving service such as Carbonite.com or Mozy.com.
Organize your files chronologically by date.
Sections to start with:
- Medical records
- Assessments/evaluations
- State Agency files
- School District (IEP) documents
- Videos

Never take originals out of your home!

Gathering Your Child's Documents

School District: Read up at Wrightslaw.com on how to request your child's educational file.
State Agency: Write a letter/fax/email to your caseworker, social worker or program manager to request your child's file.
Medical: Call the office to find out if they want a letter of request or have a form that you can fill out.
Be, stay, live organized or die by paperwork!

Don't Get Overwhelmed

To stay organized and on track, just start with two lists:

Short: 2-3 items accomplishable in 1-2 weeks
Long: the list you pull from when the shortlist is done

Remember: you are NOT alone! If you are getting overwhelmed, turn to a parent mentor who has been there, done that!

Making Wise Choices

From Lynn Hamilton, parent and author of Facing Autism

Try not to be overwhelmed
Evaluate your child
Evaluate treatment options
Talk with other parents
Talk with more than one doctor
Determine your motivation (emotions versus logic)
Begin Testing
Determine your child’s baseline & how to determine progress
Begin one treatment at a time
Re-evaluate every few months

Where Are We All Going?

We are trying to achieve our children’s true potential with the final destination unknown. Our children are not a diagnosis; they are children with a promising future AND we will never give up.

Always looking for new resources to add to the puzzle picture. The goal is often recovery, but if not achievable, keep the back-pocket goal of increased independence.

You did not sign up for the autism journey, but you are here. Remember that redisposition/diagnosis does not mean a pre-determination of the future

Although you are now on a different path; it may be the most gratifying journey you have ever been on and for the best cause of your life.

It Takes Courage

To be of HEART
To let go of FEAR
Not to be afraid to see and speak the truth
To let love be your driving force, not anger
To live life as everything is a miracle
To see uniqueness, beauty & perfection in our children

Remember: The journey of a thousand miles begins with ONE STEP (that is today!)

Source: Dr. Anju Usman

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