When our children with disabilities are infants and toddlers, it is drilled into our heads that early intervention therapies, developmental education services, and consistent doctor visits are critical for development. We are taught that we need all these services to maximize our child’s potential. Many of us are also still learning to accept our children’s limitations, and we give them as much therapy, education, and medical care as possible to try to “fix” them.
After a few years we get burned out. You can only take so many 16-hour days and sleepless nights before you want to pull your hair out. We work all day long with our children, and then are up all night, either providing more care to our kids, thinking about everything we need to do, or watching our children refuse to sleep. Most of us will wake up one day—if we went to sleep at all—and realize how many of the services we once thought were critical are not actually very helpful. It is one thing if you are seeing steady and major improvement in your child in therapy or school. It is another if the improvement is minuscule or nonexistent, and you realize you have wasted years of your child’s life trying to fix the unfixable.
Are all the services really worth it? Of course, the decision is different for each child, but I’m here to say, proudly, that less is more for some children. It is just fine to quit or reduce therapy, school, and even stop seeing many of your doctors.
But the Guilt!
I recently asked an online group of parents, all of whom raise kids with severe disabilities, whether they have ever quit or reduced therapies, school, or doctor’s visits. I was utterly shocked by how many of them have actually done this! Virtually everybody had cut back in at least one way, with some families withdrawing entirely.
Yes, people do this. But they don’t talk about it. Most of them are afraid other parents of kids with special needs will criticize their decisions. Others feel guilty for doing it, even though their family’s lives have improved dramatically. Some are concerned they will be perceived as lazy or neglectful. Many think they will be viewed as giving up on their children.
In reality, we are prioritizing. We are choosing what is best for our child and our family as a whole. We are living life to the fullest, and only we can judge what is the best way to make our family thrive. We are not neglecting our children’s needs, but rather focusing on what is truly important to their development and quality of life.
When my daughter was an infant, I read a post by another mom about how she had tried for years to get her son to sit up on his own. He was close, but could never quite get there, and so they stopped working on it. In my naïve state, I was flabbergasted that the mom would give up on her child when he was so close. If she just worked with him a little harder—did a few more hours of exercises a day—he surely could do it. How wrong I was!
While it took me several years to learn this, it turns out that kids with disabilities have limitations. There is no such thing as unlimited potential—for any kid, with a disability or not. Sometimes there is an actual wall that kids cannot climb over with current technology. Sometimes, no matter how you try, your child simply is not physically or cognitively capable of certain things.
When my daughter was an infant, I spent all day long trying to get her to realize her so-called potential. We massaged and stretched for hours. Formal therapy with a therapist was at least four times a week. We did educational activities for hours a day. Then there were the mobility exercises, the feeding therapy at each meal, the hour a day in the stander, and the weekly specialist visits. Sadly enough, I was not even as remotely hardcore as some parents I knew, who spent thousands of dollars taking their children to Canada for intensive therapy, China for stem cells, and across the country for hyperbaric oxygen sessions.
While some of my daughter’s intense routine was due to me being an overachiever, much of it was also due to my inability to accept my daughter’s disability. If we just kept working hard enough, we could overcome the disability! It turns out that she has limitations—it just took me a long time to accept them.
As I accepted her as she was, we started backing off a bit. But then the guilt set in. Was I doing enough? Was I failing her?
One day, her physiatrist told me the results of a study. A child like mine would have to be stretched and exercised six hours a day, every day of her life, in order to just maintain the physical function she had—not even to improve. Six hours! It was then that I decided to embrace reality and start toning things down. You can’t fix a child who isn’t broken. You can just accept a child for who she is.
Benefits of Doing Less
When discussing opting out of services with a group of online parents, I was really surprised at how many of us have pulled our children out of school. I think some of this has to do with the poor state of affairs when it comes to education for children with severe disabilities. Even though my child had great learning potential, none of the public schools here provided her with what she needed—intensive augmentative communication training. I saw little point in sending her into a classroom to learn how to sound out and spell simple words she could not even see. Nor was there any point in putting her in a class to learn life skills, since she can’t move, eat, or even pee without assistance.
Many families have ended up pulling their children out of school. Some homeschool or use homebound services targeted to their child’s needs; others don’t do anything educational at all. Although the schools won’t admit it, there are some children who simply will never be able to learn at all. There are also some children whose lifespans are very limited, and sometimes letting your child enjoy the few years he has left is more important than being able to identify if an object is red or blue, 5 out of 6 trials.
Many parents cited the germ factor in their decisions. When your kid goes to school or a therapy center, she is exposed to lots of germs. Germs mean illnesses that turn into hospital stays. Hospital stays mean more germs and more infections. Sheltering their children with medical complexity from the germs keeps them much healthier and able to thrive.
Some parents even avoid hospitals and doctor’s offices—and especially the ER—because of the germ factor. Ironically, kids who receive palliative care services, which allow them to be treated at home instead of in the hospital, tend to live longer and be healthier. Any medical environment is teeming with bacteria, including resistant bacteria. Kids who are able to avoid germs by skipping useless pediatrician “well” visits, avoiding the ER, and not going inpatient, tend to be healthier kids.
Another common theme among parents is the enormous amount of time wasted visiting doctors, going to school, and getting therapies—with minimal benefit to their child. Some children spend literally all day going to school, therapies, and other appointments. Some of them endure daily sessions of painful exercises or activities they find frustrating and impossible. They have no time to be kids, no time to relax, and no time just to have fun. Parents feel so pressured to keep pushing their child to maximize the all-important “potential,” that the child’s entire life becomes school, therapies, and doctor visits. Reducing or backing off lets kids be who they are—kids.
There are two main problems with reducing or stopping school, therapies, and doctor visits. The first is judgment, and while this mostly comes from other parents of children with special needs, it can also come from people in official positions. In rare cases, this can even lead to accusations of neglect. You could receive truancy notices from the school. A doctor may refuse to refill prescriptions if you don’t see him every six months. Most of these issues can be prevented with proper planning and the establishment of high-quality coordinated care for your child.
The second problem is you will carry with you—at least for a time—the thought that perhaps you truly did not try hard enough, that you neglected to find the one right therapy or medicine that would have worked, or identified the one doctor who could “fix” your child. Over time, most parents realize they have made the right decision, and that they have done everything in their power to make their child’s life as good as it can possibly be. It’s all about prioritizing your child’s quality of life.
One caveat: backing off is not an excuse for poor medical care or neglect. The way our system currently works, doctors only get paid for face-to-face visits. This is why all ten of your child’s specialists want to see you every six months—they cannot make money by discussing your child’s care with another doctor, talking to you on the phone, or emailing. Obviously, this type of system is not ideal for our kids, and it makes reducing or backing off from medical visits really difficult. I strongly advise finding someone to coordinate your child’s care through either a complex care or palliative care program, so there is only one go-to person for most of your child’s care. With well-coordinated care, you will not need to see a zillion specialists. Instead, you will just need to see the few who are truly important to your child’s health.
Yes, You Can Do It!
Less truly can be more. Children can be healthier, happier, and more like children with a little (or a lot!) less on their schedules. Don’t be afraid to back off on the things you do not see as beneficial to your child. Emphasize quality of life and the medical, educational, and therapeutic strategies that actually seem to be making a difference. You, and your child, will be much happier.