Providing a meaningful life for a child with a disability
Action Plan for Parents with Newly Diagnosed Kids
Step 1. Testing, Testing, Testing
The more the better. Test early to get a baseline picture of where your child is. A clear picture of your child's biological condition can facilitate the proper vitamin and mineral supplementations, and provide a roadmap for treatments and therapies to follow. This will aid in recovery. See Dr. Jeff Bradstreet's site for a comprehensive list of tests.
Step 2. Learn and read as much as possible as quickly as possible.
There is an enormous amount of information available. There are many websites and books. Immediately get a second phone line and a fax machine so you are able to have uninterrupted access to the internet. Try to keep an open mind and do not focus on one intervention or therapy exclusively. There are many autism treatments and therapies out there. All of them work for certain individuals, however none of them work for everyone. Search until you find the right c ombination for your child.
When you begin to research, the information can be very complicated, however the more you read and learn, the easier it is to understand. After a while the complicated medical information will begin to make sense. This is like putting together a huge puzzle.
Step 3. Set up an ABA program in the home.
The more hours the better. ABA works! There are many books and publications available. In addition there are many organizations around the country which will set up your program and provide consulting services. A discussion on ABA is beyond the scope of this site, but please see Catherine Maurice's books, which provide a comprehensive discussion on ABA. A few general suggestions regarding ABA include being certain everyone has the same expectations and goals. Have your tutors and consultants read and sign a "contract" specifically stating what is expected of them, and what is expected of YOU the parent. This will make certain everyone is on the same page from the start.
ABA is a full-time endeavor, but it produces results. Start a program, and stick with it. It will pay off!
Step 4. Consider a restricted diet for your child.
A wheat-free (gluten) and dairy-free (casein) diet has helped many children and adults. This is another challenging endeavor but well worth the effort. In addition, it is complimentary with other therapies (particularly secretin therapy.)Step 5. Start your child on a vitamin and mineral supplementation based on the results of the medical tests.
Consult with a nutritionist and your pediatrician. Try to find both who have expertise in autism. There are many wonderful doctors and nutritionists who specialize in autism. Find good ones you feel comfortable with and trust. They may end up providing services long-distance.
Step 6. Begin speech, occupational, and physical therapies where necessary.
Try to get an occupational therapist who specializes in the area of sensory integration. These are "mainstream" therapies and are generally covered by one funding source or another.Step 7. Immediately begin investigating financial assistance which may be available.
You must continually pursue avenues of financial aid. These are generally available at the county level for children under the age of three. Apply for Medicaid requesting the "Katy Beckett" deeming waiver. Autism will quickly drain your resources, however there is funding and assistance available. You must ask for assistance. I was amazed at the amount of help I received. If you do not ask, you cannot possibly receive. You need to pursue it. In addition, try to keep financial records as best as possible. Anybody who is providing funding to you, may possibly want a reasonable accounting from you from time to time. Reed Martin, J.D. has an excellent website, and has excellent resources available.
Step 8. Consider major lifestyle changes including a change of jobs or downsizing of your home.
Autism will drain your resources. Sacrifice in the short-term for your child to benefit in the long-term. You may have to give up golf on the week-ends and make other personal and professional sacrifices. These personal sacrifices are a major hurdle for many parents of newly diagnosed kids to overcome. If you are lucky enough to have a spouse or significant other, support each other and establish a division of responsibilities. Autism treatment takes sacrifice, but the hard work will be worth it in the long run.
Step 9. Occasionally, try to get out and relax.
This many times becomes the ideal setting for plotting future strategies for treatment and therapy. Keep the faith (whatever faith you believe in).
Step 10. Be the moral booster ("cheerleader") for your doctors, therapists, teachers and family.
By having a positive attitude, others will become invigorated and will want to help your child and your family. A positive attitude is infectious! Continually provide those in a position to help, with the most up-to-date information possible. Educate your doctors and encourage them to read about autism and autism research.
A Final Note...... Treating autism will probably be the most daunting challenge you will face in your life. Do not give up. Many of the treatments and interventions take time before results are recognized. Have reassurance in knowing there are many dedicated parents, researchers, doctors, and other individuals who are working hard every day to find answers. Work hard every day for your child or loved one, and demand that others work hard. Benefits will come as a result.
Attitude is Everything! Don't Give Up!