In this age of the internet, many parents crowd source their parenting decisions, even before a child is born. Parents scan the internet reading reviews of strollers and car seats, and read blogs about specifics like weaning and introducing solid foods, to overall parenting philosophies and discipline strategies. Parents of children with special needs are no different, and no child comes with an instruction manual. Therefore, we decided to compile some of the strategies that we have seen parents use when raising their children who may have physical, mental, or medical health needs. These tips are not exclusive to differently abled families, however!
When we see families at our practice, we often request access to previous medical records, previous evaluation data, and school records. All children come with paperwork, but children who have special education, medical needs, or many different therapies tend to come with a whole lot more. Many parents come equipped with a binder, often organized with tabs for school, medical, and therapies, as well as a quick reference guide for current medications, and current care team members (therapists, doctors, contact teachers, etc). While it is very helpful for the professionals in your child’s life to have access to all of these records, this is also a sort of time capsule to see the progress and growth your child has made. You will have records of goals mastered, and being able to reflect on how much your child has achieved in relatively short amounts of time can be motivating and empowering. Of course a digital organization strategy can be helpful, too, but that may entail more time scanning and saving – having multiple formats, such as hard copy and electronic, can make sure that nothing gets lost or overlooked.
Organization also goes into home living, as well. All children thrive on routine, but this can be especially helpful for children with communication and behavioral difficulties. Knowing what to expect can help prevent meltdowns related to surprises, and so many families use visual calendars to show when therapy appointments, school holidays, and special events are coming up. This will also help a child increase their independent living skills – they will be more successful in knowing how to conduct self-care activities if it becomes something built into a daily routine, or habit.
Learn about your child’s rights
It was probably not something you signed up for, but in addition to being a parent, when you have a child with special needs, you may also become an advocate for insurance benefits, educational needs, and medical practices. While there are many providers who are out of network with insurance, knowing how much you are spending on medical care and therapeutic treatment can be helpful when tracking deductibles and reimbursement, or when filing taxes. Recently we have seen an increase in families who have a dedicated bank account or credit card just for their child’s care needs. This can be a quick and easy way to snapshot monthly, quarterly, and annual costs of care, and can make finding this information easier if there is any dispute or disagreement. Many larger institutions, like hospitals, as well as insurance companies themselves, often have patient advocates, professionals whose job it is to help you navigate these systems. In the special education realm, federal law provides many educational rights to students with special needs, and knowing how to navigate this system can be tricky, but critical.
You’ve likely heard the African proverb, “It takes a village to raise a child.” This is true for all children, who have extended family, teachers, community members, and other trusted adults that help, and is especially true for children with special needs. It is vital for a parent to communicate with therapists and medical professionals, as research has shown that parent engagement is a key to therapeutic success, and helps to generalize skills learned and strategies that can be helpful. It is also important for members of the care team to communicate and work together, to ensure that goals are complementary and that children are not being placed in unrealistic situations or having goals that are counterproductive. Many medical and therapeutic professionals have parents sign “release of information forms” that allow professionals to speak to one another, collaborate with schools, and provide a continuity of care across settings.
Some parents choose to hold back in communicating their child’s strengths and needs, wanting to offer a teacher or professional a “blank slate” to work with their child and draw their own conclusions. While this can occasionally be helpful, we believe that it is a better rule of thumb to set everyone up for success. If your child can’t stand sitting on the carpet for circle time due to sensory issues, its best to communicate that up front, and work together with the teacher to figure out a reasonable solution that ensures your child’s participation and classroom success. Chairs are an easy fix for this problem, but without communicating this ahead of time, the experience may become so aversive for teacher and student that circle time becomes a feared event, instead of a fun time to participate and be social with his or her classmates.
Celebrate the accomplishments
All children grow, develop, and reach milestones, regardless of the timeline that he or she may be on. It can be exhausting and isolating to be a parent of a special needs child, and having support, be it formal through a parent support group, or informal chances to catch up over coffee with parents that get it, can be critical. Having a support system not only helps navigate some of the trickier parts of parenting with people that have been there, done that, and get it, but also allows for some perspective. A parent with a child who may be a few years ahead of yours in school can help prepare you for what to expect in teachers and staff, and pitfalls to avoid. They also can help join you in celebrations of accomplishment.
Perspective is critical, and sharing the growth, progress, and gains that you have seen your child make will be celebrated by your entire support system – and it should be! It can be easy to get lost in all of the things that society says “can’t” be done or will be “impossible” for your child to achieve, yet the real world stories of children and families beating the odds are universally inspiring. You likely have the same success story in your own home, and even something as simple as putting shoes on the right feet can be cause for a victory dance. Having the ability to share this with loved ones and people that “get it” can help remind you on some of the more disappointing days that there are silver linings out there, even though we sometimes have to hunt for it.
Know that there is help
Though it can be lonely and isolating, you are not alone. Look for your own support, and reach out for help if you need it – there is no shame, and there are many other parents just like you, who may need your support, too. Know that we are here, for support, as well.