So, I’m writing again about Grace, since I’m pretty much consumed by what’s coming up this week for her. Friday she’ll be having major surgery at DuPont Hospital for Children to address several issues. Her adductor muscles (located at the inner thigh) are so tight due to her Cerebral Palsy, that they have rotated her hips to the point that both have partially dislocated. The surgery will address the adductor muscles themselves, the dislocation of the hips, and the tone issue. She will have both femurs broken near the hip, with the ball and socket of the hip joints shaved so they fit as they should, and then they will all be pinned back together on both sides. At the same time, they’ll lengthen the adductor muscles in order to in order to allow her more range of motion. They will also be placing a Baclofen pump in her abdomen with a catheter attached to her spine, so the medication can be delivered directly to where it needs to be. She has been taking Baclofen orally for two years, and its purpose is to reduce the tone in her muscles which make them very tight. The pump will greatly reduce the amount of medication she takes (from 1.7 milligrams to .4 micrograms) per day. This will relieve the lethargy she experiences as a side effect of the medication. She’ll be hospitalized for five days, and home from school for six weeks.
She is aware that she is having surgery, and I’ve given her just enough information to satisfy her curiosity, considering the fact that she obsesses about things that make her nervous. This sets off a whole new set of medical issues that are not conducive to the surgery itself. What I’ve told her is that this surgery will make it easier to move her legs, reduce the pain she sometimes experiences in her hips, and the best part…she won’t have to take her medicine anymore. She seems okay with that. For now…
What I DON’T shield her from however, is the valuable experience of taking charge of her own medical appointments, to the extent that she is able. At 13, and remarkably verbal in the last few years, she has her own questions to be answered, and a keen understanding of just what it is she deals with medically. She may not understand the causes or the implications, but she has been empowered to voice her opinion and concerns when it comes to her treatment. It very often surprises the medical staff, particularly if it’s the first time they’ve met her. For instance, she’ll meet a new doctor, and the majority of them begin the appointment by asking me questions about Grace. She has become very comfortable saying “My name is Grace, and I have CP. It means my arms and legs don’t work like yours, but I can use my left hand more than my right. “ The doctor at this point, generally gives me a wide eyed gaze, and more often than not begins asking Grace questions without missing a beat. She corrects the nurses all the time. “No Miss Jackie, you’re not giving my arm a hug, you’re taking my blood pressure. So, what is it today?”
This past Friday, she had a pre-op appointment at DuPont, and asked the nurse “So, what exactly is going to happen when I come in for surgery?” The nurse explained to her “We’re going to give you some giggle juice, and then you’ll go to sleep. There will be no ouchies while you’re awake, but after you’re asleep we’re going to take something that looks like a tiny, tiny straw, and put your medicine in your arm through the straw.” Grace sat back and laughed, and said, “You mean the catheter for my IV? Just make sure you put it in my right arm, since I need my left arm to write.” That’s my girl. J
So much of what I (and her team of therapists, teachers, aids and doctors) do for Grace is to help her become empowered and independent. Her medical appointments should be no different. Unfortunately, there will come a time when I can’t accompany her to her appointments, or be able to help her understand her care plan. By allowing her to navigate that journey now, while I’m still around to help, my hope is that she continues to be pro-active in her treatment throughout her life. I think often times this aspect of raising a special needs child is not given the importance that other areas of fostering independence are, but I truly believe it’s as vital as getting a child into appropriate therapies.
My advice to anyone raising a special needs child, is to let them take ownership of what they are capable of dealing with. Let your physician know that your child may have questions for him that your child would like to ask all by themself. If communication is an issue, use whatever means in whatever medium is available to you. If your child signs, let them actively ask in sign while you translate. If they use a communication device, pre-program the questions into the device so your child is ready to fire away at will. Make it a positive experience that leaves your child feeling validated as a patient and a person. You’ll get it wrong, and you’ll get it right. But either way, you won’t regret the life lessons.