When you have an autistic child, your world becomes more complicated. You have more appointments, and you have to keep track of so much more paperwork and correspondence. How can you better organize all of the paperwork for the care of your autistic child and for your family? Read on for some tools and tips that hopefully will make life a bit easier for you.
Importance of organizing
While setting up an organization system may take time, it saves you time. That is because everything will have a place, and you will know where everything is located. So many times, parents need to access different types of information for our child’s doctors, school and other providers. Knowing where to find that information is key to being able to quickly locate what you need and move on.
My son J has autism and ADHD. He also has some other conditions like nut allergies. It’s a lot of information and paperwork to take care of and track! Over the years, I have refined my organizational system for his care, services, school and extracurricular activities. If I didn’t have a clear system, I would be lost and overwhelmed with the paperwork and correspondence.
Organizational tools
First, you need to determine what tools you prefer and will work best for you. Do you prefer more of a paper system with written notes and files? Or do you prefer everything to be housed electronically and use apps to organize your life?
Whichever you prefer, here are some key tools you will need (either paper-based or electronic):
- Calendar: Whether you prefer a physical planner or calendar or an app or online version, you need a place to track appointments, follow ups and other information. This could be a digital calendar such as Google Calendar, iCalendar for iPhones or a family calendar such as Cozi. You also could use a wall calendar in your home or even a pocket calendar that you carry with you. Some prefer planners to keep track of everything! Choose whichever one you will use, then put it to good use.
- Filing system: Again, whether you use a paper-based filing system or scan everything to file it on your computer, you need a filing system that will work for you. I have a filing cabinet in our home office with an additional drawer in my desk that I keep some current files in for J’s care, school and services. I also have medical and school folders on my computer with a backup. In addition, I have autism and school subfolder set up on my email account to save correspondence short-term. If I need a long-term storage option, I either print out the email and put it in the filing cabinet, or I save it as a document and file it in the appropriate place electronically.
- Another system that works for many is a large or set of smaller binders. You could have one very large binder with divider tabs to keep track of important papers, and you could have a set of smaller binders that has one for each subject (e.g., school, medical care, etc.).
- To Do’s and Checklists: Having a designated notebook and/or apps to keep track of a to-do list and/or checklists can be essential tools as well for organization.
All of these tools really help me to organize all the paperwork that I have for my autistic child and keeps me from feeling overwhelmed with sheer number of documents and appointments.
Organizing work and respite
It is difficult to work (full or part time) and raise an autistic child. Yet, it’s necessary to earn income and have health care and other benefits so that you can support your family and reach your financial goals. However, there are some things that can certainly help:
- Make sure you understand all of your work benefits that can help you and your family. Each year, I create a document to plan out my personal time off for the year and keep track of it (since it’s difficult to do in my employer’s system). That way, I make sure I take off all the time that is available to me throughout the year since my vacation time cannot roll over to the next year. Also, understand any discounts or assistance for childcare and/or back-up care or services that will benefit your family. If you live the U.S., see if your employer offers a flexible spending plan for childcare services. You can pay with pre-tax dollars, which saves you money over the long term. Also, become intimately knowledgeable of your health benefits – what’s covered, what’s not, who are in-network providers, deductible amount, coinsurance percentage, etc.
- Talk to your manager about any flexibility that may be available for your job. In this new era during and after the COVID-19 pandemic, more companies are offering hybrid or remote schedules that may allow you to work from home part or all of the time. I now work from home two days per week and in the office the rest of the week. It really helps me to be able to balance work and home better by eliminating my commute time on those days and even being able to do small household chores as quick breaks throughout the day. Laundry is so much easier on my work-from-home days 😊
Respite care is so important for parents of autistic children. We all need a break and arranging for someone to watch our child(ren) from time to time will allow us to have dinner or see a movie with our spouse, meet a friend for coffee or spend some time by ourselves for well-deserved down time. How can you arrange respite care?
- Ask a trusted family member or friend if they can watch your child for a couple of hours.
- Find a good babysitter, especially if they are trained or want to work with children who have disabilities. We had a couple of babysitters when our son J was little who wanted to study and work in child development, and they were wonderful!
- If you have a Medicaid waiver for your child, consider patient care and services (PAC) to help with respite.
- Search for a respite care provider through the Arch National Respite Network.
Organizing for your child’s schooling
School = a lot of paperwork! For a child with a disability or special needs, it is even more paperwork to organize. How can you manage it all? Here are my suggestions:
- Designate a folder or binder for your child’s individualized education plan. Personally, I use a file folder, however, I know parents who prefer the binder with dividers so they can better organize their paperwork.
- Create a “school” subfolder in your email to keep track of the correspondence from your child’s school.
- Use a school portfolio to keep sample work and artwork.
- Don’t forget to have folders for summer camp and school or other extracurricular activities.
- Be sure to take notes during your child’s case conference meetings and discussions with teachers and school administrators and keep those in your files.
Organize your autistic child’s medical paperwork
A big challenge is how to organize all of the medical paperwork for your autistic child. You’ll need to keep careful account of your child’s diagnosis and medical bills for tax purposes. I also find that I have to evaluate every medical bill closely as I’ve had providers not charge me according to their contract with my health insurance plan.
Here are my suggestions for keeping track of everything:
- Use a filing system to file the paper medical bills you receive and other papers you are provided. I use regular file folders, but I know others prefer a binder system. Whichever you prefer is fine.
- Designate a folder on your computer to keep any electronic files you receive. I have one dedicated to my son J and his medical files. I then have subfolders labeled by type and then the year.
- Create a master provider list of all your child’s doctors and their contact information. This has come in handy for me so many times over the years.
- Set up an online account for your health benefits and get to know them well. You won’t be able to tell if you are being billed correctly for your child’s services and care unless you know your health benefits. If you have specific questions about providers and services that you can’t find online, call your health plan’s customer service. I have done this in the past, and it was well worth the effort. They were really nice and answered all my questions and even sent me follow-up information via email.
- Be sure to carefully store your child’s diagnosis records. I have had to pull these out and make copies several times over the years to justify certain services for my son.
- If your child qualifies for a waiver from Medicaid, keep a separate file for these services and the paperwork you receive. I have found it’s helpful to be able to refer to these records quickly when needed.
Organizing your home
Organizing your home can go a long way in helping you feel more in control and on top of things, especially when it feels like everything is in chaos.
One of the best things I’ve ever done to make my home more organized was to do an extensive declutter. It takes a while, and you have to do a little at a time. Choose a room and then declutter a drawer, shelf or area each day. Before you know it, you will have your home cleared of the clutter and excess stuff you no longer want or need. It also improves your mindset too.
Another way I’ve organized our home is that I have a “launch pad” set up to make our school mornings easier. It is in our entryway in our house. It has a coat rack, hooks for backpacks and a shoe shelf. In the morning, our son J knows where to find his school backpack, jacket or coat and shoes to get ready to go to school. This reduces time significantly when getting ready for school, and he isn’t searching throughout the house for the items he needs for the day.
Do you have specific equipment, accessories and other items for your child’s care? Be sure to have a dedicated area for those. This will allow you to find what you need quickly and also know when you are running low on supplies that need to be reordered.
Finally, be sure to organize your child’s room. Here is a great article from ADDitude to help a child with ADHD organize their room. However, I think this is good advice for any child!
Staying organized can help you better care for your child. When you have a child with autism and ADHD, the paperwork mounts and keeping it organized can help you stay sane and feel better in control when things feel out of control. Do you have other tips that have helped you to organize all the paperwork for your autistic child? Leave a comment below!
