Special Needs Child? A Mom Shares Practical Tips to Keep You From Drowning

Having a special needs child requires a certain amount of organization to cope with the endless piles of paperwork. In just the first five years of our daughter’s life, more paperwork has accumulated than in my life altogether. I never imagined the avalanche of white that would follow doctor appointments, test results, therapy sessions, medical bills, healthcare claims, prescriptions, as well as school, grant, and scholarship applications. I soon found myself overwhelmed and drowning in piles of important details.

Too often I was caught unprepared without detailed information of my daughter’s medical history or current care readily available for inquiring professionals. This created significant hiccups at times. I already had to wait months to see certain specialists, and my face-to-face time with them, often mere minutes, needed to be used wisely.

It didn’t take me long to come to the realization that her care would require better organization on my part, not to mention a bigger purse. I had to bring my A-game by becoming some sort of human filing cabinet. In an effort to stay a step ahead of demands, I began copying and sorting like a machine, filling a binder with more information than even necessary. It could have been considered overkill, but I call it advocate efficiency, AKA motherly love determined to do anything within its power to remove hindrances to a child’s progress and care.

My massive, hot pink binder, divided well and tagged colorfully, was empowering for a season; but as my daughter has gotten older and begun school, the accompanying paperwork has overwhelmed my initial system. After a few good years, I have been forced to adopt a new strategy.

My all-encompassing binder had to be divided into smaller editions by year, making everything relevant to my child’s current needs that much more accessible. I am now less likely to be caught off guard and have found matters move along more quickly by having the right information with me at the right time.

I cannot tell you how very beneficial this has been in not only saving precious time, but adding to my confidence in being an active and knowledgeable advocate of my daughter’s care. Not to mention how much more impressive, and maybe even intimidating, it must look to professionals when I arrive with a thick, no-nonsense binder ready to be drilled on any pertinent topic concerning my child. I do believe such intentional organization has moved our daughter’s care along in a more efficient manner and also helped me not to lose my sanity.

Here’s how I categorize and tag my yearly binder to organize the paper trail more efficiently for the care of my special needs child:

1. Medical

Diagnosis statements, lab work, test results, prescriptions, or any other communication from physicians seen regularly, i.e. pediatrician, dentist, optometrist, any other specialists (neurologist, orthotist, pulmonologist, etc. Accurate and timely communication between healthcare providers is essential for ensuring comprehensive patient care, especially when it comes to dental health. A dentist, such as Gregory L. Bryan, DDS, plays a critical role in managing a patient’s overall well-being by communicating with other specialists and primary care providers about diagnoses, treatment plans, and any ongoing care that may affect oral health. This collaborative approach allows for better-coordinated care, ensuring that any medical conditions that could impact oral health, such as diabetes or heart disease, are properly addressed alongside dental treatments.

2. Therapy

Names and contact information on each therapist and agency they represent, along with evaluations, assessments, and therapy reports.

3. Education

School contact information, eligibility documents, current IEP (Individual Education Plan), progress reports, evaluations, and any pertinent written communication from the local school or governing school board.

4. Financial

Insurance, Medicaid, Supplemental Security Income (SSI), Special Needs Trust Information, as well as documents for claims, scholarship, waiver and/or grant applications.

5. Supports

Here is where I file any supportive equipment our daughter currently needs to function. For a time that was a walker; now it includes leg braces and an AAC (Augmentative and Alternative Communication device that requires regular oversight and maintenance). I also keep instructions if applicable, and any communication with the providers for the necessary upkeep.

Final tips for executing this hack successfully for your special needs kid:

One last item thoughtfully included in this binder is a picture of my daughter. This is to remind me of the reason I spend time shuffling around these papers and of the reward in diligently doing so. This not only motivates me but also creates an opportunity to share about the person the papers represent. I find it helps those I encounter on my daughter’s behalf to see beyond the black and white and consider the very real person so very dependent on their efforts.

To save from further weighing down my purse, whatever papers I refer to less frequently are not included in this yearly binder. If still considered important to keep, I file them away in a cabinet, still easy to retrieve when needed.

I am so glad to be setting this system in place during the first year of our daughter entering school. I cannot help but feel better prepared for the years ahead. However, if your child is older, it is never too late to tackle the mounds of paper incurred over the years. Just take a deep breath and dive in, knowing it can only benefit your child more and help you reclaim some peace of mind. You are both worth it!