About the Work Group on Autism Research and Training

What Do I Do Now?

After familiarizing yourself with Autism Spectrum Disorders, you may be asking yourself, "Now what do I do?". This can be a stressful time. You may experience a range of emotions as you adjust to the news. You will also encounter a whole new language of acronyms, terms, and definitions. Along with this you may be trying to navigate unfamiliar territory within the service system. Your physician and/or specialist may have given you specific recommendations for a treatment plan to work toward for your child. Sometimes those recommendations include services in which there may be a waiting list or other obstacles that make it difficult to get those services, which is frustrating. It is important to talk with those professionals who are working with your child to find out what you can be doing to help your child. Establishing a Medical Home is critical to providing continutiy of care across all settings for you child.

We have outlined for you a brief overview describing what Autism Spectrum Disorders is and also where to find information on public and private services. Things to keep in mind to help you learn how to support your child are:

  • Contact Infant-Toddler Services or Tiny-K in Kansas, or First Steps (Missouri) if your child is younger than 3 (see Early Intervention Services). Contact your local school district if your child is 3 years or older for early childhood services. If your child is receiving early intervention services then you can learn from these home visits. Ask questions! These professionals are there to help you help your child develop new skills. Talk with and observe closely how specialists play, interact, and praise your child.
  • Join a local parent support group. If one is not available in your area then contact Families Together (Kansas) or MPACT (Missouri Parents Act) to connect you with a parent who is sharing a similar experience.
  • Contact your local CDDO in Kansas or the Missouri Regional Center in your area. These points of entry offer supports and services for your child and family.
  • Follow through on recommendations given by your child's evaluation team on any medical tests or other assessments that may have been recommended. Establish a Medical Home for your child (see Medical Home under What are the Autism Spectrum Disorders).
  • Read as much as you can about autism spectrum disorders. Go to your local library to research more about your child's diagnosis or start your research with the websites shared with you in this booklet. The K-CART Resource library is also avilable to you.
  • Carefully investigate therapies that you read about. If you have questions regarding these therapies call your child's doctor or specialist to get their opinion.
  • Become aware of and learn about the special education process and the development of an IEP (Individualized Education Plan) or 504 Plan, if applicable. You are your child's best advocate and are a valuable team member. You can access information online or by contacting Families Together in Kansas or MPACT in Missouri (see Regional, State, and National Organizations).
  • Remember that you can be doing many things with your child at home or in the community. Activities that are part of your natural routine can help to provide opportunities in the areas of social skills and language development. Also, reading books, singing, and simply talking to your child will help to increase your child's vocabulary and provide increased learning opportunities. Try this website for some fun and creative ways to learn at home: http://www.nea.org/parents/ppower.html

Importance of Good Record Keeping

Over the years it is very likely that you will hand-out, be given, and collect lots of information pertaining to your child. The following are some tips on organizing that information. Figure out what works best for you and make sure the materials you need are handy so that paperwork gets filed and not misplaced.

It is important to keep the paperwork you gather organized. Information from medical visits, school meetings, therapies, and other types of support will be accumulating. It will make your life much easier when it is time to find that information when requested. Here are some tips:

  • Get 3-ring binder(s) and dividers. Make labels that organize the paperwork so it is easily found by you when needed. You may wish to have a binder just for medical and divide it according to office visits; medications prescribed; immunizations; over-the-counter medications recommended by your physician, etc. Other binders may be just for school; therapies; providers; and community resources, etc.
  • Keep a hole punch handy to make sure the information you gather gets placed in the binder as it is collected and not left to stack up on you.
  • Date all information you keep. It will be very helpful to know when this information was shared with you.
  • Keep a large manila envelope in the front of the binder and use it to store copied information that is typically requested by agencies. It will be there when you need it and no need to make copies which may hold up the process.
  • Keep in mind it is valuable to look back and note the progress your child has made. Good record keeping will make it easier to track your child’s progress and determine what interventions were successful.

Medical Home

Our belief at the CCHD is to encourage the establishment of a medical home. As defined by the American Academy of Pediatrics it is a place of care that is continuous, comprehensive, compassionate, and culturally reponsive to the needs of families. It involves the cooperation between the parents, pediatrician, and other health care professionals to work together with others that support the child. This typically involves the child's educational and developmental supports. A medical home is particularly important for children with special needs who are likely to require specialized care and services. Typically your child's pediatrician or Family Practice doctor would be the child's medical home.

As a parent you will probably become quite knowledgeable in regards to your child's developmental disability. You are the constant in your child's life. The knowledge and options that you bring to any setting should be recognized and respected.

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