A WEEK-BY-WEEK PLAN FOR THE NEXT 100 DAYS

Getting organized

You may already have a lot of information about your child and about autism in general. Organizing paperwork and your child’s records can help you manage their care and progress. Use a simple system, like a binder and dividers, to keep all the information in one place. To get started, you may need to get supplies, like a binder, dividers, paper and pens.

Your binder

If you’re using a binder, you may want to organize all the paper and information by year and by subject. We’ve included a sample contact list, phone log and weekly planner in this kit so you can copy and use them as needed. You also may want to summarize your child’s progress in therapy and at school with cover sheets in each section. Here are some subjects you may want to include:

Contacts

This is information about how to contact your child’s service providers and caregivers. You may want to include it in your cell phone contacts. Information can include email addresses, phone numbers and addresses.

Schedules

This is information about dates and times to remember. You may want to include it in your cell phone calendar. Information can include:

  • Therapy and other appointments
  • Program start and end dates
  • Deadlines

Diagnosis

This section includes medical documents and prescription information, if your child takes medication for any symptoms of autism or other physical or mental health conditions.

Therapy

This section can include information about therapies your child receives. You may want to have a separate section on each one, like:

  • ABA
  • Speech therapy
  • Occupational therapy
  • Sensory integration

Individualized Family Service Plan (IFSP)

This section is for documents related to your child’s IFSP (for children under three years).

Individualized Education Program (IEP)

This section includes documents related to your child’s IEP (for children age three and older).

Using your weekly planner

The weeks and action items in this planner may be different than your child’s actual care. This is okay. Every child is different. Your plans depend on things like:

  • Your child’s age
  • Your child’s symptoms
  • Where you live
  • How long it takes to get evaluations and services

You can adjust your planner, as needed, to respond to and meet your child’s needs. Follow the steps listed for each week. You also can add your own steps and notes along the way.

Week 1

Complete evaluations. If your child hasn’t had a complete evaluation, you might want to schedule one to learn as much as you can about your child’s strengths, challenges and needs across a variety of areas. Get started right away. There may be a waiting list for evaluations and services. It’s okay to put your child’s name on several lists and then take the earliest appointment.

Get Early Intervention services. If your child is younger than three: Contact your state health department to find out about EI services. If your child is three or older: Contact your local school district about EI or special education services. EI or your school district may want to do their own evaluations, separate from the medical evaluations, at their expense, to determine your child’s eligibility for services. This can be a long and time-consuming process but may be useful in further determining the services your child needs.

Keep a record of phone calls. Make some time each day for phone calls to set up evaluations and begin services. Track your calls. Write down the day and time of each call you make. Make a note of when to make a follow-up call.

Start a video record. Take videos of your child that show a range of behavior in different settings, including at home, at school and at therapy. Record good and not-so-good behavior. Later, you can review your child’s behavior over time. Make new recordings every three months. Use the video to track your child’s progress and to track what therapies work or don’t work for your child

Week 2

Get support. You can get support from: • A parent support group • A parent mentor • A Special Education Parent Teacher Association (SEPTA) which may offer informational meetings and parent outreach

Get services. Ask for new services or follow-up on services you’ve already requested. Check to find out where your child is on waiting lists and what programs are available. Track your phone calls and when to make a follow-up call.

Learn about treatment options. Get information online from trusted sources, such as websites ending in .gov, .org or .edu. Be sure to check that the options are evidence-based. Speak to your child’s providers. Learning about your child’s treatment can help you make informed decisions for your child and your family.

Join online groups and ask questions. Sharing experiences with others can help you feel more confident about your child’s treatment and progress.

Contact the Autism Speaks Autism Response Team. Our trained staff can answer questions and help you find local resources. Call: 1-888-AUTISM2 (1-888-288-4762) En Español: 1-888-772-9050 Email: help@autismspeaks.org

Week 3

Get services.

  • Ask for new services or follow up on services you’ve already requested.
  • Check to find out where your child is on waiting lists and what programs are available.
  • Track your phone calls and when to make a follow-up call.

Play with your child. Play is an important part of any child’s development. For a child with autism, it’s a critical part of learning social skills and how to interact with others.

Spend time with your other children. Autism affects your whole family, including your other children. Take time alone with them to ask them how they’re feeling. Take time to support their interests, activities and engage with their friends.

Week 4

Build your team. Continue to add members to your child’s care team, including health care providers, therapists and other service providers and teachers.

  • Observe your child’s therapy sessions to identify new team members.
  • Talk to other parents to help you find therapists and other providers.
  • Start your child’s therapy even if you don’t have every team member in place before.
  • Visit our Resource Guide to find resources and services in your area.

Create a safety plan.

  • Read the section of this kit about safety.
  • Look around your home for possible safety hazards.
  • Identify any triggers that might lead your child to wander or exhibit other unsafe behavior. Develop strategies to eliminate these triggers as best you can.
  • Contact local police and fire departments to tell them about your child’s needs to help ensure your child’s safety.

Plan some time away. It’s okay to spend some time away from your child. Taking care of yourself can help you better care for your family. Even if it’s just going for a quick walk by yourself, taking a break can help you re-energize for the rest of the day.

Week 5

Continue building your team. See Week 4.

Find out about your insurance.

  • Contact your health insurance to find out what therapies are covered. Your health insurance may cover therapies or services not covered by your child’s IFSP or IEP.
  • Keep track of your insurance claims. You may want to create a separate binder to keep track of insurance forms and paperwork.

Know your child’s legal rights. Familiarize yourself with your child’s rights. There is a wealth of information available, including on the Autism Speaks website. Learn your rights to Early Intervention and special education services. You may find out your child is entitled to services you weren’t aware of or hadn’t considered. Understanding your rights can help you ensure that your child is getting all of the services to which they are entitled.

Do something for you.

  • Be proud of what you’ve done in the first month since your child’s diagnosis. It may have been one of the most challenging months of your life. But you did it!
  • Take care of yourself. Do things that you like to do, especially things you did before your child’s diagnosis.
  • Ask family and friends for help. They may want to help but aren’t sure what to do. Be direct and tell them exactly what you need.

Week 6

Continue to learn about treatment options.

  • Look for information online.
  • Talk to your child’s provider.
  • Go to a workshop or conference about autism in your area.
  • Contact our Autism Response Team.

Connect with other parents.

  • Join a support group either in person or online. Being with people who know what you are going through will help you stay strong. You can learn a lot from hearing other people’s stories.
  • Spend time with a parent who has had experiences like yours. Your child’s health care providers or therapists may be able to connect you with other parents in similar situations.

Find childcare.

  • Get a babysitter who has experience caring for autistic children. Ask parents, people in your support group and your child’s health care provider to help you find someone.
  • Do a test run. When you find a sitter, plan a short night out.
  • If you already have a babysitter, invite them to spend time with you and your child so they can learn how to care for your child.

Continue to build your team.

Continue to follow up on services and research any new possible providers.

Schedule a team meeting.

Schedule a meeting with your child’s therapists and caregivers. If you can’t meet in person, ask them for help setting up a conference call. At the meeting:

  • Set up lines of communication, such as email or text message chains. Encourage them to communicate with each other as needed.
  • Set up a communication schedule so you are always on the same page with regard to your child’s progress.
  • Set measurable goals for your child and determine how and how often you will follow up on them.

Week 7

Learn how to use your child’s therapy methods.

  • Use your child’s therapy methods at home. This can help your child progress even between therapy sessions.
  • Take parent training. Therapists often train parents on how to do therapies at home.
  • Ask your child’s providers for tips on how to best incorporate their strategies into your child’s every day life.

Create a weekly schedule.

  • Keep a written schedule of your child’s appointments. This will help you stay organized and on time. It can also help you plan for other members of your family.
  • Keep the schedule in your binder or on your phone.

Continue learning about treatments and services.

Consult the Autism Speaks website for contacts in your area.

Stay organized.

  • Spend some time on your binder.
  • Add paperwork and new tabs, as needed.
  • Throw out things you don’t need.

Week 8

Check your progress.

  • Look back through this plan. Is there anything you started that needs follow up?

Find recreational activities for your child.

  • Find out about recreational activities for your child in your community, like gymnastics or swimming. Being active outside of home and school can help broaden your child’s development. Some organizations have programs just for people with autism.
  • Ask other parents about programs that their children enjoyed.
  • Use our Resource Guide and our calendar of sensory-friendly events to find programs in your area.

Plan time with your other children. Your other children will learn a great deal from having a sibling with autism. Maintaining as much normalcy as possible will help them reach their potential too. Help teach them that though their sibling may be different from them, they can still have an amazing relationship, it may just be different as well. Try to provide them with strategies to do so.

Stay connected with friends and family.

  • Stay in touch with friends, neighbors and family. Talk to them often and make plans to see them.
  • Keep up your social life as best you can.
  • Be active in community events. Going out and being involved can help you feel less isolated.

Spend time alone with your partner.

  • Plan a relaxing and fun activity with your partner.
  • Celebrate your progress through month two!

Week 9

Continue to build your child’s care team.

  • Continue to evaluate service providers and therapists. Use the internet.
  • Find online resources that are helpful to you. Add useful and trusted sites to your favorites in your web browser.
  • Sign up for e-newsletters, list-servs and online communities where parents and professionals share information.

Continue to connect with other parents.

  • Meet and spend time with other parents of autistic children. Being around other adults who share your experiences can help you build confidence and stay strong.
  • Stay active with a support group, either in-person or online.

Check in on your child’s sessions.

Continue to observe your child’s therapy sessions. Your child should be getting used to their therapy routine by now.

Play with your child.

Continue to use the strategies you’ve learned from parent training sessions and other resources.

Week 10

Schedule a team meeting.

  • Schedule a meeting to discuss progress and strategies.
  • Stay involved with the team. Attend therapy sessions as often as you can. This can help you be better informed about your child’s needs and goals for the team meetings.
  • Encourage your team. Let them know you appreciate everything they are doing for your child.

Plan a family outing.

  • Plan an activity that everyone in your family can do.
  • Use the strategies you’ve learned from the care team to help your child participate.
  • Ask your child’s therapists to help you pick the activity and plan strategies that can help make it a success.

Learn more about the law.

Continue to learn about your child’s legal rights to services.

Week 11

Check your child’s progress.

  • Note how long your child has been in treatment. It may be a full month by now.
  • Review your binder and videos to look for improvements.
  • Continue to attend therapy sessions. Take notes on what you see. Keep them in your binder and bring them to your next team meeting.

Dig deeper into treatment options.

  • Set aside time to read more about treatments and therapies.
  • Take notes and include them in your binder.

Week 12

Connect with your partner.

  • Take some one-on-one time together.
  • If you’ve had a hard time communicating with each other, see a counselor. A counselor can help you learn to share your feelings and help keep your relationship healthy.

Continue connecting with other parents.

  • Stay active in support groups. Parents are amazing resources and can give you emotional and day-to-day support.
  • If your group doesn’t feel right to you or you need a different kind of support, look for another group. It’s okay to have more than one or to feel more comfortable with one group than another.

Sign up for parent training.

  • Using the methods you are learning from your child’s therapists will help create a productive environment at home, so your child will have the best chance of obtaining their goals.

Week 13

Schedule a team meeting.

  • Have a team meeting to check your child’s progress. You should see progress after at least six weeks of consistent therapy.
  • If you’ve seen little or no progress, talk with the team about adjustments to your child’s therapies and routines.

Continue learning about autism and what works for your child.

Keep learning about autism. Books, seminars, movies, websites – all sorts of resources can help you deepen your understanding of autism and your child.

Week 14

Do something for you. Enjoy some “me” time. Do something nice for yourself. Celebrate your success through 100 days!