I can’t promise that there won’t be days where you feel like ripping out your hair. Between doctor’s appointments, therapies, and school meetings, it’s no easy task being the best advocate for your child. However, here are some tips to stay organized with documentation and appointments to help you be your child’s number 1 fan.
Binders
Binders are, without a doubt, one of my favorite ways to stay organized. There’s something about a brand-new three-ring binder with a set of pristine dividers that gets me excited. I’m definitely more of a physical-copy-kind-of-girl, but having a folder on your computer drive can also function as a “binder” of sorts.
Different sections to include in the binder:
- Contact information: service providers, caregivers, doctors, school staff
- Schedules: therapy days and times, appointments, program start and end dates, deadlines
- Medical information: most recent neuropsychological reports, speech evaluations, occupational or physical therapy evaluations, yearly physicals, immunizations, and current and past prescriptions
- Sections for each therapy (speech, occupational, physical, cognitive-behavior, applied behavior analysis) – it is also helpful to maintain records of services from past service providers
- School: a copy of individualized education program (IEP) or 504 plan, recent progress reports
Get Support
Being a parent of a child with a developmental disability can seem alienating and lonely, not just with families of your child’s peers, but even within your own family. It’s important that you know that you are not alone. There are many families going through very similar challenges every day.
- Search for a local support group or parent mentor
- Ask if your child’s school district has a Special Education Parent Advisory Council (SEPAC) which offer informational meetings and outreach opportunities
- Look for qualified childcare or respite opportunities
- Check with your state to see what services might be provided for individuals with developmental diagnoses
- AutismSpeaks.org is a fantastic resource for finding many of the above support systems
Insurance and Legal Rights
Research your state’s insurance laws and legal rights of individuals with developmental disabilities. Additionally, make sure you’re well-versed in your insurance plan and coverage.
Check-in
As the parent, you have every right to ask for progress updates as often as you feel appropriate. Request daily logs from school that include challenging behavior, goals completed, and social interactions. Plan for monthly meetings with service providers to see what has worked and what modifications have been made. Perhaps most importantly, set up team meetings that include ALL service providers for your child. Making sure everyone is on the same page with programming is paramount for progress!
I keep every important appointment and reminder in my Erin Condren planner and I rarely go anywhere without it! She also sells planners for kids to help them with organizational skills, as well as compliment cards! I give them to my staff every month to let them know that they’re appreciated! (Sometimes my husband will get one if he remembers to unload the dishwasher!)
Never stop seeking ways to become a better model for your child. Look into opportunities for training and keep up-to-date on therapies and research related to your child’s diagnosis. BUT! Make sure you make time each week to DIFY!
Nice article, I also really enjoyed your “Function Junction” piece. As a special education administrator for 16 years, now retired, I think your blog is very timely and appropriate. Best of luck. Feel free to check out my blog at http://www.retiredandreadytoroll.
Congratulations on your retirement! I’ll definitely check out your blog. Thanks for reading 🙂