It goes without saying that the life of a parent of a child with special needs can involve a lot of moving pieces. Far too often parents are left to manage a long line of activities with little to no help. Therapies, school, activities, family… all of these things can be immediate, everyday elements pulling a parent to do more. While we very much believe that the members of our community are borderline superheroes, the truth is any human being has limits. As a result, we've found one very basic piece of advice to be consistently helpful: making lists.
Now we're not here to try to convince you that you need our help to consider a list as an option. Lists are a common tool used in business, families and more. In fact, we're often taught at a young age to itemize our assignments and projects in order to get them done and you may even have your child, if able, using lists for their chores or daily activities. Lists are not some new invention. However, their value may be completely underestimated by a parent of a child with special needs.
Lists: Life's Back-Up Plan
So why are lists so special? In short, a list can serve a variety of purposes other than their immediate and obvious value. One very real and specific value is that you, as the parent, maintain an invaluable amount of information in your memory. What can happen, unfortunately, is that your memory can be taken for granted. Whether on a stressful day where too many items are coming at you at once, or when someone else needs to play your very important role, a list helps document the challenges ahead. Having a list to reflect on can avoid unnecessary delay, stress and more; just because you're good at juggling 100 things without a list doesn't mean life might not be easier by using one!
You should also consider how your list can help someone else. Simply put, a list creates a roadmap for your child's care in a way that protects your family in case of an emergency. If you broke your leg today, would someone be able to jump in and handle your child's unique daily schedule? What about doctor appointments? Phone numbers? Medications! Allergies! You've done such a good job being the expert of your child's special needs that you may have taken for granted the fact that others may need access to your unique knowledge when you're unable to step in.
That's not to say this same advice can't also help in making life easier for outside help. Mapping out your day is an effective way to not only ensure that you're doing your best to stay on track, but also to assist others in assisting you. Without a roadmap of what you have on your plate, it may be difficult to offer suggestions to a helpful friend, babysitter, family member, etc. You may be helping yourself in the long term by documenting your efforts in the short-term, while also taking some stress of your shoulders to remember "everything" in the meantime.
Now think about school: tracking what works versus what doesn't can be an exceptional tool to help your child avoid frustration while also helping teachers be impactful. Whether it's tangential components of an IEP or simple ideas like what can upset your child, having a list of details over the course of a school year can be immensely helpful at best or, at minimum, serve as a checklist when meeting with teachers, school officials and more. Taking just a moment to write down something you hear from your child or a teacher after school might pay dividends down the road. Just as we recommend parents keep their own records of how therapies, treatments and medications impact their child, you can similarly track the success record of school methods and more.
Finally, especially during the summer, a list can be a consistent reminder of all the things that your child needs on a daily basis. It's very possible to take for granted easy access to things you only need occasionally when combating the symptoms associated with your child's Cerebral Palsy. However, when you're away from home, those items are suddenly not available. Take the fear out of your trip planning by establishing a go-to list of things your child needs on a Wednesday, let alone at a water park a state away. You not only help take the guesswork out of packing, you may also help avoid unexpected costs, visits to an out of town doctor and more.
We want to hear from you! What sort of helpful lists do you recommend for parents of children with special needs, including Cerebral Palsy?