Hi friends, for the last few days Boo Bear has not been so perky. He has cold symptoms, no energy, and no appetite. He has not been to school since Monday. Today we went to see the doctor. Of course, Sam, his AAC, was with us. In the past, even the most well intentioned of doctors have been unable to really connect with Boo, they always defer to me. They don’t ask him how he is feeling or what hurts. It reminds me a bit of a veterinary exam. Today was different. We had an older, very patient, doctor who gave off an aura of kindness. Boo is good at picking up vibes off people and noticeably relaxed around her. Using his device, he told her that his tummy hurt, and he did not feel well. Instead of asking me all the questions, the doctor began talking to him. She explained everything that she was going to do and was very careful. Nothing really turned up. Ears, nose, throat, temperature were all normal. His weight was startling low for someone of his height, but no lower than it had been last summer. She decided to draw some blood. Boo was a very good sport during the blood draw but did tell the nurse that he was sad. He did not, however, pull his arm away. After that, we sat for a while, waiting on lab results. While we did, Boo entertained himself by naming all his favorite foods. Eventually, the doctor came back in. Boo immediately told her that he wanted to leave. She told him that his blood work was perfect, to drink lots of Gatorade, and he was free to leave. She told him to come back if he still felt sick in a few days.
Boo Bear and I took our leave. We picked up a coffee for me from Caribou (extra expresso) and a freezie and a burrito from Taco Bell for him. To my delight, he immediately dove into the freezie. It probably felt good on his throat. By this time, I was developing a sore throat and figured that he had much the same. At home, he nibbled away at most of his burrito before curling up on the couch to watch PBS kids. There are few things is Boo’s world that cannot be fixed by watching a few episodes of Curious George.
This outing made me happy for two reasons. One, whatever Boo has is a virus and will pass. We just need to keep him hydrated and fed. Two, he was able to communicate with the doctor and the doctor responded to him as the young adult that he is. I have heard many parents of non-speaking young adults say that they do not see any reason for their adult child to have an AAC. They claim they can usually figure out what s/he wants with just some guess work. But guess work is frustrating for all concerned. The parent may not know what their child wants, and the child many not get what they want or need. For those outside the family, it is almost impossible to figure out what the non-speaker wants or needs. An AAC gives the user agency. With Sam, Ravi was able to tell the doctor what was wrong, and that he did not appreciate a blood draw. She was able to communicate with him, instead of me, which is appropriate since Boo is nearly twenty. An AAC matters in other ways, as well. The other day I was going to take Boo to Taco Bell. The plan was to get a strawberry freezie and a burrito. Boo had other ideas. Using his AAC he was able to tell me that he did want to go to Taco Bell, but only for the freezie. After that, he wanted to go to Culvers for chicken strips. I complied and he was happy. For a non-speaker without an AAC this could have been a trip of utter frustration. The young adult might be happy with the freezie, but turn his nose up at the burrito, even though he had very happily eaten one the day before! All persons have their likes and dislikes, autistics included. All persons deserve to be able to make their choices known and understood. This is a hill I will gladly die on. If a child or adult is non-speaking, find a different method of communication. This can be PECS, an AAC, a spelling board, sign, the possibilities are endless. Just guessing at what your budding communicator wants is not enough, they have to have a voice and they have to have agency.
So, now we are home and recuperating from the morning’s adventure. Boo looks a little more perky and will probably go to school tomorrow. He is now watching Sid the Science Kid. Sam is sitting next to him, silent for the moment, but ready to spring into action at any time. The dogs all have bones. Life is peaceful. Be good humans, we will talk again soon.
Harriet's Hedgehogs and Autism Advocacy 