Why you are the CEO and CFO in special needs parenting
A discussion in one of my groups the other day centered around the fact that parents of kids with special needs have to be the CEO on their child. This extends beyond the idea that we are experts on our child. The CEO, by definition, is in charge of making all management decisions.
Parents of children with special needs have to be the CEO, and there is LOT to manage.
Some days, it can feel unmanageable. A CEO is typically responsible for the success of a company, which is no doubt stressful; but a parent feels they are responsible for the success of something even greater than a company……
Parents feel they are responsible for the success of their child’s future.
I know all parents feel this way about all of their children of course, including those with special needs. However, the stakes are higher when you have a child with some sort of delay or disability. A child with special needs is already starting life behind the eight ball. A parent of a child with special needs feels intense responsibility to give them the best chance at a normal life, which is hard enough in this world without a disability!
Parenting a child with special needs is a juggling act.
When a parent has a kid with special needs, they spend their time not only at the pediatrician, but are bounced from specialist to specialist in many cases, just in an effort to get an actual diagnosis. Kids with special needs in many cases have visited developmental pediatricians (different from regular pediatrician), neurologists, and psychologists. They have had blood taken, scans done, and more doctor visits to discuss results. They have been poked, prodded, and examined more than the neuro-typical peer. Their tiny bodies might have been subjected to sleep studies, sedation, and sometimes surgery.
Therapy is always in the mix. They may see occupational therapists, physical therapists, speech therapists, play therapists, behavior therapists, early interventionists, vision therapists and the list goes on. Seeing a therapist always means another new evaluation, where this child who struggles anyway is subjected to tests and judgement calls as to their performance compared to typical peers.
Obviously, there are only so many hours in a day and so a parent; the CEO if you will, has to choose and prioritize many of the above listed appointments and even others not on this list.
Unless you have been in this position, you have no idea how excrutiatingly difficult it is to decide which doctor or therapy your child needs most or more.
Remember what I said before. As a person making these decisions, the weight of your child’s future feels like it lay squarely on your shoulders. Hopefully, you can get an appreciation of how big that weight becomes.
Let’s not forget though, money. All of these things cost money. Insurance in many cases does not cover the brain scans, the MRI’s, the evaluations and the therapies.
It causes a parent to become the CFO for their child as well.
A CFO is responsible for the financial affairs. Oh, and in the case of a parent with special needs, one doesn’t count on paying thousands of dollars out of their budget when they are starting a life with their partner, buying their home, and preparing for a new baby. I had a supervisor tell me once at a private practice, no one can afford therapy, because no one counted on the huge hit to the budget these therapies, doctor appointments, and evaluations will cost your family.
If you are lucky to get some sort of disability, Medicaid, or scholarship to help fund the cost; it’s not without another price.
All of these applications take an enormous amount of time.
Parents need to gather required documentation, letters from insurance companies, doctors, evaluations, tax returns, and medical records to name a few. A parent will spend hours filling out paperwork, spending time on the phone, and listening to hold music. This time is well spent if a parent can get insurance to cover or get money to help with expenses; however, prioritizing time and finding time is not easy when we are shuffling our kids to doctor appointments and therapy appointments (see above). This on top of finding time to put them in “typical” kid stuff like soccer or gymnastics and letting them go to birthdays like other kids do; in hopes that they can feel “normal” at least some of their childhood.
If we are lucky, there are times we CEO parents find the perfect team. We’ve got the diagnosis, the plan and team of therapists to treat it, and we see our child do the most amazing thing in the entire world……
It’s probably the most beautiful gift in the entire world and in that moment; all the guilt, all the stress, all the worry, all the money, and all the time was 100% worth it.