THE SPECIAL NEEDS PATIENT (notes from a caretaker)

And it has happened yet again.

I accompany my adult son, whom I call the “walking wounded,” into his primary care doctor’s office. This son is a special needs person who seems typical enough, yet when having to converse with someone, his expressive vocabulary exhibits signs of deficits. This doctor has known my son for over nine years, through many tests and diagnoses (of which he has several, one of which is a chromosomal abnormality).

An hour later after sitting and waiting in the exam room, my son is on edge. Unfortunately, a wait time of over an hour is the norm. His head hurts and his hands are clenching and unclenching. He needs to sit in a chair instead of on the exam table. Fine. He climbs down and sits next to me. Finally his doctor walks in. The doctor looks over a paper on which I have written symptoms my son has been exhibiting for a long time. I do this to refresh the doctor’s memory, as my son’s file resembles a bible. The doctor says my son should get one of those self-driving cars so when he feels ill, he could get to where he needs to go. I think this is a rather odd joke. Turns out it’s odd–but not a joke. He’s serious. My son mumbles something under his breath. This visit is going downhill fast, and this doctor, who says he did his part of his residency in psychiatry, doesn’t see my son’s body language which is of an animal ready to bolt.

Then the doctor turns to my son and asks him what he’s feeling. Feeling? As in, confused? Angry? Tense? Headachy? Nauseous? This is too vague a question for him. I know this. My son is about to bolt out the door. I speak up. I begin to tell the doctor what our visit is about. The doctor puts up his hand and says firmly to me: “Wait. I want your son to answer. You can’t jump in like that and answer for him.”

My son, in protective mode, sits up straight and says, “My mom can answer.”

I hand my son the car keys and tell him to go outside to wait. He leaves. Doctor says, “Well, now I can’t treat him. I needed him to tell me what was wrong.”

I point to the paper. “He dictated that to me. Those are his words. It’s what he does sometimes. I’m his mother and I know when he can’t express himself to the doctor. You’ve known him for almost a decade.”

Doesn’t make a difference. The doctor defends himself; tells me to bring him back in. Right. I again repeat, “I’m his mother. I know he won’t. It all went downhill, first when we had the first appointment of the afternoon yet waited over an hour, then when you mentioned the self-driving car which to him is like a slap in the face, and now the generalized question that he would have trouble answering.” I don’t want to say anything I’ll regret, so I open the exam room door and say, “This isn’t working.”

I hear, as I walk away, “Don’t you want the prescription for (name of latest test)?”

I shake my head, more in disbelief than to just say no.

Please, doctors and nurses, please understand that there are times when a patient prefers the caretaker to answer. Perhaps the patient isn’t well enough to speak up at that time, or maybe they asked the caretaker to answer all questions. And yes we, the caretakers, do know the ten-second rule; that when the patient is asked a question, the caretaker should wait ten seconds to see if the patient responds. If not, then the caretaker speaks up. And please do not speak authoritatively to the caretaker. Nor laugh. Nor be demeaning. We put up with a lot on a daily basis.

We know you have studied and worked hard to get to where you are today, and we respect that. But please, walk a mile in our shoes before you assume. Many impressive degrees after your name doesn’t begin to shed light on a caretaker’s responsibilities. Please respect us, too.

 

Hills and Valleys, Parking Lots and Restaurants

It was toward the end of the Early Bird Special dinner hour and the parking lot was full. But that was for  the restaurant next door. This particular lot was almost empty; my ol’ rustbucket van parked close to the medical  building where my son was to have a procedure done. I was nervous; he was beyond that and teetering on the edge of hyperventilating. Across the street was the hospital he was born at and spent a small portion of his childhood and teen years. The two brick wings of that building seemed to reach out toward him, encouraging him to come back and stay awhile.

And in a month he would.

Right now though he had a more pressing matter to take care of and it was not going to be pleasant. I wouldn’t be able to  stay by his side, holding his hand. All I could do would be to wait in the waiting room of this doctor’s office and listen to muffled sounds coming from the examining room. All I could do was bite my lip until it was sore, ring my hands (and yes, there is such a thing as ringing one’s hands, especially when you’re the parent), and pray–for what, I don’t know. Pray for his pain to go away? For him to be strong? For me not to faint? All I want for him is for all this to stop. But when you’re born with a syndrome that causes various things to happen to your body, it’s on-going. You, as the patient or as the parent, learn to take it like rocky hills among the serene valleys. It’s no longer an adventure, like I used to tell him as a child, but hurdles to overcome.

Oh, but I so wanted instead to take him to that that Early Bird Special next door, even if it was just dry meatloaf and gummy mashed potatoes. Even if we would be the only ones under 70. At least it’d be more normal than this, when many people are finishing up their day and going home, and here my son and I were, going into a medical building where it was so void of patients and staff that our footsteps echoed as we slowly made our way to room number 101.

As we entered the waiting room, my stomach growled. My son smiled and said, “Mom!”  I shrugged and smiled back.

After he made it over this hill, we were going to cross that valley of parking lots and enter the blissful world of food.

I Thank You For Not Laughing

To All Social Workers, Special Ed Teachers, or Anyone Who Works With The Special Needs Population:

When we, the parents of the special needs person, are upset, do not sigh audibly and say “I’m just breathing” when called to task on it.

Stay calm, even if we aren’t. You’re the professional. Act like one. The parent is too close to the situation.

Many times we are extremely tired, even if we work from home. You would be too if you had to walk in the parent’s shoes for that proverbial mile. Many days it feels like we’ve not only walked, but scaled high fences and swam the Atlantic Ocean without a break.

Speaker phone is okay for planned conference calls. It is not okay when you just want an audience of your colleagues.

We are so used to dealing face-to-face with anyone who specializes in working with the special needs population, that we can sense when you’re being condescending. Or rolling your eyes when we can’t see you. It’s not paranoia; it’s being astute.

And last, thank you to all the truly professional social workers, counselors, special ed teachers, and case workers for not laughing at us regarding any of the above. We are only human trying to navigate the waters of uncharted territory. And we are trying our very best.