Semantics

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Today a friend I knew when I was in grad school made a post on facebook during a trip to the local fair asking something along the lines of “is it normal for 5 and 6 year olds to have pacifiers and ride in strollers now?” This friend has always had a penchant for the sarcastic and lives in a heavily hispanic area despite being a white man, so it was quite obvious that his comment was saying, “Latinos, you need to get your kids up and walking and not give them pacifiers.”

My children are Latino. My 4 year old rides in a stroller when we go to theme parks for safety reasons.

I decided not to play into the racism of the comment and instead mentioned that many children are special needs and require sensory stimulation in crowds and need to be in strollers for their own safety or they may simply be disabled. A friend of his responded, “Their kids will end up gap toothed and having weak legs.”

The conversation moved towards “well, there must have been a lot of kids with autism there!” My response, “1:42 boys have it. My son is autistic. So was Thomas Jefferson.” To which gap-tooth-weak-leg woman said, I kid you not, that *I* was being ableist for calling my child autistic.

I have heard the idea of “autistic” being ableist before. I have heard the arguments of  it not defining the child. I have heard them and as a mother of a child with this disability and as a linguist, I wholeheartedly disagree. I respect the desire of people who want to be referred to as “having autism” and will always follow their leads (or that of the parent in the case of young children), but I will not be told by the mother of neurotypical children how I should refer to my child who is on the spectrum. Take a seat. Pull out your suitcase. Unpack for a minute. I know I had to before writing this post.

If given a choice of terms, I would say my son does not have autism. To me, you have diseases. He didn’t acquire autism when someone sneezed on him. When he was born, he was hard of hearing. He was not “without hearing.” We don’t change the morphology of any other disability-related word to make it less “defining.” Why are we afraid to define our children or, in adult situations, ourselves, as autistic? Why can’t we embrace it as a trait rather than an affliction to be “had”?

My son was born with autism. It may not be in his DNA as far as the geneticist can see, but his tendencies were visible soon after birth. Autism is part of him. He doesn’t have it any more than he has latino heritage or white skin. He is latino. He is white. He is autistic. No, it doesn’t define him, but it certainly makes up a large part of his world view and to take that away from him and isolate it as a sort of illness is offensive to me as his mother. Also, I feel like saying he “has autism” gives the false impression that it’s an issue to be cured. He doesn’t need curing. He may need therapy to help him navigate the world, but he certainly doesn’t need a “cure” for his autism. As a very staunch pro-science mother, I also feel this term plays a bit too much into the woo ideas of it being curable through pseudoscience.

I am certain that as Little Bear grows autism will be an important part of his identity.  Every part of his identity deserves an adjective. He came to us with both a full head of hair, light skin, and autism. Calling him brown-haired, light skinned, and autistic are just naming three aspects of his being that make him my beautiful, special little man.

If he decides that he feels differently as he matures, I’ll change my way of referring to him, but for now, he is my autistic son Little Bear. If the person has any background in medicine, I may say he’s on the spectrum. You will never hear me introduce him as “my child with autism” unless the day comes when he says that’s what he wants.

So the ableists who want to call out the mom of an autistic child for defending her child and his culture… they need to take a goddamn seat and check their privilege while not defining my child according to what they feel defines him and doesn’t. Autism defines my child. Latino defines my child. South American defines my child. North American defines my child. Bilingual defines my child. Adorable defines my child. Just as a word can have many definitions, so can a child. Autistic is just one of the many listed under the dictionary entry of Little Bear.

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MRI/EEG

Little Bear’s MRI/EEG was last Friday. The experience was horrible. The Children’s Hospital scheduled him for an 11AM appointment. Apparently that didn’t mean 11AM. It meant 12:30. He wasn’t allowed to eat after 3AM and was allowed clear liquids until 9AM. Mama Bear made him a variety of jello flavors to eat for breakfast.

We arrived at the hospital about 45 minutes from home and did the paperwork pretty quickly. There was a card on the front where everyone who helped us was supposed to put their names for accountability in patient treatment. Papi Bear and I both nodded approvingly at this idea – there was no way anyone was going to drop the ball if they had to write their name and position on the card.

We went back to radiology. They led us to the waiting room. There were no toys, no games, no colors, no books – just a small TV with no sound that was playing Disney Junior on loop. About a dozen children ranging in age from newborn to ten were getting upset and cranky from lack of food and glut of waiting. If there is a waiting room in hell, I’m almost certain this is what it would look like.

Little Bear was hungry. He kept telling me over and over, “Leche, leche, leche. Mef, mef, mef!” (mef=mas=eat). Eventually he started to bite me. I asked repeatedly when we would be taken back for the prep. They eventually revealed that we wouldn’t be sent back until 12:30 – a full hour and fifteen minutes after we arrived to the room. They made the appointment to literally have us sit in a room and wait with an autistic 2 year old and no distractions for over an hour.

It took 30 minutes of fighting, but we finally were moved into a “bay” in the MRI area. Progress! Within a half hour he’d be in the MRI and we’d be home by 4.

At 12:20, they came in nonchalantly said, “Oh, it’s going to be at least another hour and a half. We’re running behind.” I flipped my crap at that point. Little Bear was biting me non-stop, he was crying from boredom, and the toys they had finally brought for him were starting to get boring. We fought and argued, but it did nothing. In fact, the nurse told us, “He was allowed to eat until 3AM. Why didn’t you feed him then?” Because it’s THREE AM and he’s TWO. “Well, you didn’t have to wake him up to feed him.” Oh really? Are you recommending I feed a sleeping toddler? You, a nurse in a pediatric hospital? I argued that, had they been honest from the beginning, we could have arrived 1.5 hours later and he could have had jello and juice up until we arrived. She basically shrugged and left us again – both myself and myself fuming from the bad treatment our child was receiving.

Finally, around 3PM, the anesthesiologist came in and started the process. I asked him how long the testing would be, to which he responded, “He’s having three tests done and each one takes about an hour, so I’d say 3 and a half to four hours.” We said we’d go and come back in 3 hours. The nurse said we should wait in the waiting room. I told her where she could shove her waiting room. We would go eat and come back in three hours.

Around 2.5 hours in, Papi Bear and I decided to run to the store to get some apple sauce and milk for Little Bear when he woke up. Along the ride back, we got a call from the nurse on Papi Bear’s phone, basically telling us that we were horrible parents who abandoned our child in the hospital. Papi Bear said, “Hold on… back up. What?” They said they had been calling my phone for an hour. This was untrue. I checked my phone later and they had been calling for 15 minutes. Also, we had an alternate number, my husband’s number. They said, “We expect the parents to stay in the waiting room. We aren’t babysitters.” Oh well really? You expect us to not eat all night/day, too, even though we’re not having tests done?

We arrived back to the hospital and I ran inside while Papi Bear parked the car. I found Little Bear and he was being fed juice by the nurse. There was an empty bottle of formula on the bed and I requested water for his milk. I asked them to call my husband and let him know where we were, since he was parking. The nurse responded, “We need to go home, so he should just stay out there.” To which I said nothing, since my son still had his gown and monitors on and an IV in place. She handed me my milk and got to work.

While the nurse took off the monitors, I gave him an apple sauce. About 3/4 of the way through it, she said, “Oh wait. He shouldn’t be having that. He’s on a clear liquid diet. What is that?” I said, “It’s apple sauce.” “Oh well I guess that’s okay then.”

Okay now. I went to nursing school. I may not have finished, but I went long enough to know that the following items are NOT on a clear liquid diet:

apple sauce

milk

formula

All of which they seemed perfectly okay with giving my child, despite his discharge instructions.

When we finally left, we were FURIOUS. I complained to the hospital and it took over a week to get a response from the department. Basically they’ll mention it in a meeting and hope we’ll use them again. Not likely. Not likely at all.

Therapy versus Home

Little Bear at therapy: Plays with puzzles for 30 minutes and says “Quack” to the duck, despite much pushing from his therapist to do more.

 

Little Bear at 1AM last night: Points to cat and says, “Two… cent. Two… cent!” (The cat’s name is 2%). He follow this up with,  “Leche, gracias.” And now he’s sitting in the play area barking at the dog in his puzzle, mooing at the cow, and saying the letters. But never with his therapist. She must think we’re the worst parents ever.