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Getting Organized
The first thing you will need to do is get yourself organized. You may already find you’ve accumulated a lot of paperwork about your child and about autism in general. Organizing the information and records that you collect for your child is an important part of managing his or her care and progress. If you set up a simple system, things will be much easier over time. You may need to stop by an office supply store to pick up a binder, dividers, some spiral notebooks, loose leaf paper or legal pads and pens.
The Binders
Many parents find that binders are a great tool for keeping the mountains of paperwork down to a more manageable, mole hill size and for sharing information. You may want to organize by subject or by year. In either case, here are some of the subjects that you are likely to want to have at your fingertips:
- Contacts -A section for service providers, caregivers and others
- Schedules -A section for therapy times, program start and end dates, deadlines
- Diagnosis - A section for medical documents and any prescriptions
- Therapy - A section for Speech, Occupational Therapy, SI, and so on (Multiple or sub sections may be necessary)
- Individual Family Service Plan (IFSP) - A section for your child’s IFSP and related documents (For children under three years of age)
- Individualized Education Plan (IEP) - A section for your child’s IEP and related documents (For children older than three years)
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 may also want to summarize your child’s progress in therapy and at school with cover sheets in each section; sample summary sheets are also in the Resources Section.
Using your Weekly Planner
The time frame and action items will vary depending on your child’s symptoms, your child’s age, where you
live and what you have already accomplished. Even if you are very on top of this, it may take a while to be able to access additional evaluations and the services that your child needs.
Start now.
Week 1
Complete Evaluations - If your child has not had a complete work up, schedule the remainder of necessary evaluations (see Getting Services below).
Getting Services -If your child is younger than three, you’ll start with Early Intervention (EI) often through your state department of health. If your child is three or older, you’ll start with your local school district. Call to begin the process of getting services. EI or your school district may want to conduct evaluations of your child (at their expense). This can be a long and time consuming process, but may be useful in further determining the services that are needed.
Keep a Phone Log - Try to set aside some time each day to make the phone calls necessary to set up the evaluations and to start the process of getting services. There may be a waiting list for services and evaluations, so make the calls as soon as possible and follow up as needed—and don’t hesitate to put your name on multiple lists so you can get the earliest appointment possible. Some of the professionals who provide services through Early Intervention or Special Education may take a specified number of days to complete evaluations or begin services.
Start a Video Record -Try a variety of settings and show a range of behavior. Note both good and not-so-good behavior so that, in the future, you will be able to recognize where your child was at that point in time. Make a new recording every three months at home, in therapy sessions, wherever. These video “snapshots” can be used totrack your child’s progress and help show what effect a particular therapy or intervention may have had. Label the tapes or discs with your child’s name and the dates they were recorded.
Week 2
Getting Support - Find a support group or a parent mentor. If your child is in school, you may also want to find out if your district has a Special Education Parent Teacher Association (SEPTA), which may offer informational meetings and parent outreach.
Getting Services (Follow Up) - Follow up on services. Continue to check status on waiting lists and available programs.
Research Treatment Options - Start to read material, join online groups and ask questions that will help you understand the treatment options that are available and what might be right for your child and your family.
Week 3
Getting Services (Continue to Follow Up) - Follow up on services. Continue to check status on waiting lists and available programs. Keep using your phone log to record the dates you contacted service providers and track when you may need make another call.
Play with Your Child - Play with your child. Play is an important part of any child’s development, and is a critical part of learning socialization for a child with autism. We’ve included a very helpful article, Ideas for Purposeful Play, from the University of Washington’s Autism Center that illustrates how to include useful play activities, which will help your child learn.
Set Aside Sibling Time - The siblings of children with autism are affected by the disorder as well. Consider spending time talking together about their feelings. Start a “Joy Museum” together of happy memories. Talking about these times can help them remember that their lives involve a lot more than autism.
Week 4
Build Your Team - By this time, your child’s team of therapists, educators and caregivers is probably taking shape. Continue to look for service providers and observe as many therapy sessions as possible to identify new recruits for your child’s team. Talk to other parents who may know of therapists with time available for your child. You don’t have to wait until every member of the team is in place before beginning therapy.
Create a safety plan - You may already have had to adapt your home because of your child’s behaviors or needs. You’ve probably already read the section of this kit called Create a Safety Plan. If not, carve out some time to survey your home for possible problems and begin contacting local safety personnel to plan ahead to ensure your child’s safety.
Plan some Time Away - Plan some time away from your child. You will do a better job helping your family if you take care of yourself. Even if it’s just going for a walk alone, you are going to need a break so that you can come back with a clear head.
Week 5
Continue Building Your Team - See Week 4.
Review Your Insurance - Investigate your insurance coverage to see what if any therapies are covered and make sure that you are getting the most from your provider. Your health insurance may cover therapies or services not covered by your child’s IFSP or IEP. You may need to create a separate binder to keep track of insurance
claims. Document everything.
Get to know Your Child’s Legal Rights - Familiarize yourself with your child’s rights. There is a wealth of information available. You may find out your child is entitled to services you weren’t aware of or hadn’t considered.
Do Something for You - You’ve made it through a month, and it may have been one of the most challenging months of your life. Remember to take care of yourself. Remember who you were before the diagnosis. Spend some time on an activity that you enjoy. You will find it helps you face the challenges ahead. There are probably friends and family in your life who would love to help, but may not know what you need. Don’t be afraid to ask for help.
Week 6
Continue to Research Treatment Options - Continue to research treatment options. If possible, go to a workshop or look for additional information online.
Connect with Other Parents - Go to a support group or spend some time with a parent who can help you along your journey. You’ll learn a lot and being around people who know what you are going through will help you stay strong.
Find Childcare - Get a baby-sitter. Look into qualified baby-sitting services and respite care. Don’t wait until you’re desperate—find someone you’re comfortable with and plan a night out. If you already have a great baby-sitter, invite her or him to spend some time with you and your child so they can adjust to the new techniques your family is using at home.
Build your Team - Continue to follow up on services and research any new possible providers.
Schedule a Team Meeting - If you’ve built a team of therapists, you may want to call a meeting to establish procedures and goals and open lines of communication. You’ll also want to continue observing therapy sessions and using what you learn at home. If it’s difficult to schedule a time for the service providers to meet in person, you may want to schedule a conference call instead.
Week 7
Become Competent in the Intervention Methods you have Chosen for Your Child -Take advantage of parent training. Therapists often provide parent training that will help bring the methods used at therapy into your home and help your child’s progress.
Create a Schedule - Having a written weekly schedule for your child’s therapy schedule will help you see if you’ve scheduled your time well. It will also help you plan for the other members of your household.
Continue Learning about Treatments & Services - Continue research on treatments and services. Consult the Autism Speaks web site for contacts in your area.
Spend some time organizing your paperwork - Organize any paperwork that may have piled up. Try
to eliminate any materials you won’t need.
Week 8
Check your Progress - Look back through this action item list. Is there anything you started that needs follow up? Investigate Recreational Activities for Your Child - Add a recreational activity, such as gymnastics or swimming, to broaden your child’s development.
Plan more Sibling Time - Your typically-developing children will no doubt be richer for having a sibling with Autism. But maintaining as much normalcy as possible will help them reach their potential too.
Make Contact with Friends and Family - Stay connected. Make contact with your friends and family and participate in community events. Keeping up your social life will help you safeguard against feelings of isolation.
Spend Time Alone with Your Spouse - Plan a relaxing and fun activity with your partner. After all, you’ve just made it through month two.
Week 9
Round out Your Team - Continue to evaluate service providers and therapists.
Use the Internet - Get e-savvy. Spend time researching online resources that will keep you up-to-date. Add useful Web sites to your favorites, register for e-newsletters and join list-servs where parents and professionals share
information.
Continue to Connect with Other Parents - Stay active with a support group or, if possible, socialize with other parents of children with Autism. Being around other adults who understand what your family is going through will help you stay strong.
Check in on Your Child’s Sessions - Continue to observe therapy. Your child should be getting used to their therapy routine at this point.
Play with Your Child - 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 - It’s team meeting time again. Schedule a meeting to discuss progress and strategies. Stay involved with your team by continuing to attend as many sessions as possible.
Rally the Troops - Encourage your team. Let them know you appreciate everything they are doing for your child.
Plan a Family Outing - Plan a family outing. Schedule an activity designed to include your child with autism and utilize strategies you’ve picked up from therapy. Ask your child’s therapist to help you with specific strategies
to make the outing a success.
Brush up on the Law - Continue to learn about your child’s legal rights.
Week 11
Check Your Child’s Progress - Look for progress. Hopefully, your child has been through a consistent month of therapy at this point. Review your binder and videos to see if you notice improvements. Continue to attend sessions too. Take notes on what you see. Keep a copy in your binder and bring them to your next team meeting.
Dig deeper into Treatment Options - Set aside time to do some research and reading on additional treatments and therapies. Make notes and copy useful information to include in your binder.
Week 12
Reconnect with Your Spouse - Take some one-on-one time to enjoy each other’s company. If communication has been difficult, consider scheduling time with a counselor to keep your relationship healthy.
Continue Connecting with Other Parents - Keep going to support groups. Parents are amazing resources and will help provide emotional and practical support. Look into additional groups in your area if you don’t feel you’ve found the right one for you.
Sign up for More 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
Hold a Team Meeting - Check on progress again. You should continue to see progress after at least six weeks of consistent therapy. If there has been little or no progress, call another team meeting to brainstorm and make adjustments to your child’s routine.
Continue Learning - Keep learning about autism. Books, seminars, movies, Web sites—all sorts of sources can help you deepen your understanding of autism and your child. See the Suggested Reading List in this kit for ideas.
Do Something for You - Enjoy some “me” time. Do something nice for yourself—you’ve made it through 100 days!
