One of the hardest things for parents is taking our child to the doctor’s office. One thing that is harder than that, is taking him to the hospital. By the age of five, my son had six different surgeries. These were all minor surgeries, done as an outpatient.
When he was a baby, it was relatively easy to take him in for a procedure. As he got older, it became harder and harder. Here was our little boy, nonverbal, and we had no idea what he understood. My husband and I would talk to him and explain what was going on. Looking back now, I think he understood. Did it make a difference? No. Think about. You are three years old and people are sticking needles into you. What child is going to truly understand that?
One of the worse visits to the hospital was a trip to the emergency room. He was around three years old. He was screaming and swatting at his stomach. It was obvious to me that something was wrong. As we drove to the hospital, he started calming down. By the time we got there, he wasn’t that upset. We waited to get in to be registered. I could see he was starting to get upset again. When our name was called, I took him into the little office to take care of the paperwork. I told her something serious was going on and I didn’t know what. I explained that he couldn’t talk. The lady just looked at me like I was stupid. Then, my son started screaming and crying in pain. I could see a doctor through the door and I watched as he started walking over to us. I was crying as I explained to him that my son doesn’t talk and could not answer any questions. The doctor called for a nurse and said that it was obvious my son was in a great deal of pain. They took us into the back and made the lady registering my son come to us after they had things under control.
Dealing with people at a hospital or doctor’s office that do not understand is a common occurrence. They come at my son with needles and gizmos. They talk loud, as if he has a problem hearing (because he doesn’t talk) and that scares him. It’s important that before anyone touches or tries to assess my son, I explain how to approach him. I also like for a health care professionals to talk to my son the same way they would any other child. My son finds the experience a whole lot easier if he is treated as a real person. We are lucky to have a good team of pediatric doctors that takes care of him. They all talk with him and ask him questions. Of course, it takes longer for the visit because my son has to slowly type out an answer. No one seems to mind. They all love having him come in, no matter what the reason. The hospital, on the other hand, is always difficult. I have not come up with a way to make the experience better for my son and me. It is a roll of the dice as to what kind of people are working at the time. I do, however, make them slow down and take their time. I don’t care if they are in a hurry. My son needs to have things explained to him. He needs to be given a chance to cooperate before they decide to come at him with the needles and what not. They might get frustrated with me. Too bad. My son is my only concern.
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12 comments:
Have you read the book, My Stroke of Genius by Dr. Jill Bolte Taylor? It has to do with her recovery from a stroke, but it also tells about her perceptions about how people were treating her at the time when she did not have language abilities. One of the things she talked about was that people tended to talk to her as if she was deaf instead of "wounded." Another thing she spoke of is being able to understand people's intent, even if she couldn't understand their words or was unable to communicate back.
I don't have any experience with autism but you are one strong woman. I can't imagine how difficult it has got to be to get these doctors and hospitals to understand.
Great post. I agree, that there's nothing better that health care providers can do than to treat him normally. I think you are doing a great job, kudos to you :)
Thank you for sharing, I do not have any children with autism, but I do understand the pain in your heart when you have to bring your baby to the hospital. You are a very courageous woman.
Minus her NICU stay, I've only had to take my little one to the er once (thank god, knock on wood) and it was so horrible. I can't imagine having to do it over and over and over. Hugs to you!
The sad thing is it's not just kids with autism that hospital staffs have issues with. We had to take my son to the ER for what turned out to be pneumonia at 6 months old. Once he was admitted, the nurse on the pediatric floor took him to the "treatment room" where they tried to get an IV going. We found out they stuck our son with a needle 13 (!!!!!) times before giving up. When I told the doctor, he went off on that nurse. Her response? "Well he's just a baby. He won't remember any of this."
That's horrible. Some people should not be working in the health care field.
It's really good that the doctor could see he was in pain. Don't ever stop speaking out for him. See I try to prepare Dakota before we go to the doctor. He does pretty good there for the most part. He is verbal but at times he chooses not to look at them or speak to them. So I can only tell them at times what he tells me.
Even my Asperger's child, who is extremly intelligent, has to be dealt with in a certain way. Because she is so smart, people assume she 'gets' everything. She doesn't. You have to be very blunt with her, and very clear. She doesn't get hints, and thinks in very black/white terms.
I have to tell people that she is book smart, not street smart, and that there is a huge difference. I dread taking her to a new doctor, or anywhere new, because there is such a learning curve with anyone new.
Bed side manner in hospitals and staff always has needed a lot of improvement its rare to find staff that treat people kindly. Glad that you found some good one's to help you out. HUGS
I've never experienced that before nor can I imagine what you go through
You're doing a great job as your son's advocate! Hugs!
As someone who works in the medical field, I totally agree with you. Finding a nurse or doctor at the hospital that will take time is like finding a 4 leaf clover. They are out there but can only be found once in awhile.
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