The Unwelcome Surprise Awaiting Parents of Young Children With Special Needs
November 11, 2016
Parents of young children with special needs already know their lives can’t be planned with any accuracy. Illnesses, behaviors, school and social problems pop up like fire ant hills. The one thing upon which we can depend is a team of medical specialists.
That is, until the child becomes a young adult and is forced to find an entirely new team. I never knew this would happen. It wasn’t in the manual. So I’d like to help prepare other parents for what is to come.
Your child can be fired by their pediatric doctors when they turn 18.
By the time your child turns 18 or 20, you are fully dependent on your team and have an internal GPS of the children’s hospital. You know exactly how many minutes it takes in traffic to get to the office. You know the quietest place to sit in the waiting room. You bring your 20-pound binder with a full list of questions to each appointment.
Before Caleb’s 1996 birth, I don’t think I even knew that children’s hospitals existed. I must have driven by them and looked past them. After 20 years, we have now visited several children’s hospitals in five different states. They all attempt to be bright and colorful but there is nothing bright or colorful about having to be there. I saw the halls and grandiose seating areas through a grayed-out Instagram filter.
On my first visit to the Children’s Hospital of Philadelphia to visit my very sick baby boy, his face was contorted in a grimace of pain. Red, green and yellow plastic tubes stuck through his skin into his heart and lungs, EEG leads were tangled everywhere, and his hand was taped to a board to keep an IV in place. Numb, I watched as babies were wheeled in and out of the pediatric cardiac ICU while mechanical beeps rippled about me in doppler waves.
A few days later I met the first of many specialists. I didn’t know there were so many kinds of doctors, or that they had pediatric counterparts.
When you find out how many specialists your child may need, the effect is similar to waking up in a strange place. You should recognize your surroundings but all you feel is panic and fear. In Caleb’s lifetime, he has needed a regular pediatrician, general pediatrician, pediatric cardiologists, immunologists, infectious disease specialists, neurologists, endocrinologists, developmental pediatricians, orthopedic surgeon, general surgeon, psychologist, regular therapist, otolaryngologist, plus a host of speech, physical and occupational therapists.
Over 20 years, I made the transition from shock that my child needed so many doctors to complete dependence on them. I went from not wanting to be in a children’s hospital to never wanting to leave. With an average of 55 visits each year, these doctors were integral for Caleb and me. I learned their language to the point that several asked me if was a doctor.
In 2006, Caleb broke his femur while trying to be Buzz Lightyear. The poor kid doesn’t have reflexes to break any fall, so when he landed from a height of 18 inches, his femur snapped about three-quarters of the way up. After arriving at the hospital by ambulance, I was running alongside his gurney when a nurse told me there were two army medics who would like to follow along. I welcomed them into the fray of Caleb’s life and rattled off his 24 different diagnoses. At one point, one of the medics stopped and asked the nurse if I was a doctor. Smiling sadly, she said, “No. These moms know everything.”
I was flattered and repulsed by her response. I never wanted to be that mom. I wanted to be the mom who was cheering on my son the quarterback or chaperoning science fairs and school dances. But that wasn’t meant to be.
When Caleb turned 18, we were both still completely dependent on all of the pediatric specialists who had helped him so much. We were oblivious that this time was coming to an end. I ignored the stares of parents with neurotypical babies or young children as we sat in the same waiting room. I had started to notice there were no other people Caleb’s age but it just didn’t click the way it should have.
Caleb’s pediatrician was the first to tell me that she could no longer treat him. It was a gut punch because she was trained to know that when he presented with a rash, it might be staph. Caleb has always been a zebra and the learning curve for doctors is at least two years. Not only were we losing an adored doctor who understood and could appropriately treat Caleb, we had to start all over with a new doctor. It felt like a seventh-grade breakup.
The flip side of medical professionals thinking I’m a doctor is that new ones almost seem to suspect that I might have Munchausen By Proxy. Or they know I’m not a doctor and think I’m trying to make a diagnosis. Caleb has been my life’s work–I can see in my head how all the odd symptoms might add up to something only Dr. House could find.
Knowing that anyone might think I could either cause or imagine some of the terrible things Caleb has fought makes me physically ill, but I have learned to persevere with my listing of his symptoms and then wait patiently while they are confirmed. This usually culminates in respect from the doctor and then we can all go back to the most important job of caring for Caleb, but it’s a game I’m really tired of playing. I’m not a doctor but I know my kid and his history better than anyone else.
Caleb mentally tests around age three to five, so he felt comfortable in an office with young children. He relates to them. He loved the bright colors in children’s hospitals, which made me belatedly realize the décor is for the kids, not the parents. He was so comfortable there and now he has to contend with drab adult offices.
After the pediatrician fired us, then came the cardiologist. Understanding the trauma of losing a trusted doctor, they hired a transitional doctor to bridge the gap between pediatric and adult care, for which I am incredibly grateful. I wish more practices would do this.
We have now been officially fired from all of the pediatric specialists. Most of them were able to recommend an adult counterpart, but the most difficult doctor to find was a primary care provider. When I mentioned that Caleb has autism, several offices told me they weren’t accepting new patients. I finally called my personal doctor, who had never met Caleb, and was told that he, too, was not accepting new patients.
Exhausted and frustrated, I told the nurse, “Before you say no, you need to know that Caleb is every doctor and dentist’s favorite patient. He is so well-behaved. He’s sweet and cooperative and I will always be with him.”
She was silent, so I continued, “He has so many specialists that all I really need is a doctor to treat ear infections and maybe the flu. For everything else, I will take him to a specialist.”
The nurse spoke to the doctor, who finally agreed to take Caleb on as a patient. I thanked him profusely at our first appointment and he told me he was amazed at what a wonderful young man Caleb is. I smiled. I already knew.
Caleb is truly an exception. I have friends whose kids with autism are violent or need to be sedated for a routine tooth cleaning. As their kids age out of pediatrics, they are being met with outright refusals for treatment. Where on earth can they go when no one will treat their young adult? I understand the dilemma for doctors, and I understand the frustration for parents. I have no clue where to find the answer to this one.
I don’t think anyone seeks out the comfort we find in children’s hospitals but when you are suddenly pushed out the door, it makes you realize that things didn’t unfold like you hoped. You dreamed that your child would be cured, or that he would be the one to break all the rules. In many cases like my own, you leave the children’s hospital wearing a heavy cloak of dread for the future. You are now the parent of an adult with special needs and the end is nowhere in sight. I think this is another reason why leaving the pediatric world behind is so painful.
So here is my advice to every parent whose special needs child is around age 16. Start the search now for providers who might treat your soon-to-be young adult. It feels like it will never happen but it will and you need to be prepared. As the infectious disease doctor who fired us told me, “I’m a specialist in little kid issues, Caleb needs someone who understands the challenges he will face as an adult.”
Kate Welch, author of the blog “Neverland Without a GPS” shares her journey as a proud, single mother of two great children—her 20-year-old daughter who is a microbiology major in her third year of college and her 19-year-old son who has 22Q Deletion Syndrome.
Through her series here, she hopes to reach out to everyone who belongs within the rare community and ben an asset who can spread knowledge and understanding on the topic of caregiving to an adult child.
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