“I don’t think his final diagnosis will be Autism.”

In 2002, I met a girl online while searching for other fans of a Spanish pop singer. We quickly became friends and, when my best friend died of lupus a year later, she was a huge support for me. Fifteen years later, we remain close friends and confidants. During those fifteen years, she went on to become a Pediatrician. Dr. Friend now works at the clinic of a prominent hospital in her city.

She lives far away from us, so she hasn’t seen Big Bear since he was a baby and this was her first time meeting Little Bear. She knows that Little Bear has an ASD diagnosis and I had told her about my husband’s freakout on Monday.

Little Bear has done phenomenally at home with me this past week. On Monday, he was throwing tantrums and wouldn’t sign “want” at all. Today he didn’t throw a tantrum until 3 hours into our day when he was legitimately tired and done. When we did our puzzle together, he not only signed “want” every time, but he coupled it with “Yo” (“I” in Spanish) and the name of the animal that the piece was related to. This was after only four days of working with him at home. He is like a different child.

So it was this Little Bear that Dr. Friend met. She gave him a board book of Brown Bear Brown Bear What Do You See and, after reading it twice, read Dr. Seuss’s ABC with him. She was surprised to see that he knew huge portions of the book by heart and was able to turn the pages with minimal help.

Later, we took our cat to the vet since she had been suffering from a UTI for a week. Little Bear fell asleep in the car on the way. I asked Dr. Friend to stay in the car with him while I took the cat and Big Bear inside for our appointment. At some point during the appointment, he woke up and she brought him inside and showed him the cats and the fish. During the entire time, he was well behaved, held her hand, and smiled at her while he laughed at the animals.

Later that evening, Papi Bear and I took her to a Brazilian restaurant for live music and too many caipirinhas. After two or or three, I asked her for her opinion on Little Bear.

“I only just met him, but I don’t think his final diagnosis will be autism. He doesn’t exhibit a lot of the signs of children on the spectrum. He is delayed linguistically and socially, but he was completely fine spending time with me and he’s very interactive with people he knows. He’s very affectionate, he follows directions or he at least understands them and chooses not to follow them.”

She advised us to continue with his therapies, get as many as possible, have him in the special needs school for at least a year, but she thinks he will eventually mainstream.

I think this is what my husband needed to hear and I do think her comments are more along the lines of what the neurologist feels, even though his therapists and pediatrician continue to say he is autistic. Ultimately it’s the symptoms that matter rather than the actual diagnosis, but to hear from a trusted friend that he is social and cognitively where he should be definitely relieved some of my anxiety.

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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.

Look, Mommy! It’s Little Bear!

We were running around the playground playing monster. Mama Bear being chased by Little Bear and Big Bear, although Little Bear inevitably ended up behind and the chased. Lots of laughs and giggling, but then Little Bear tired of the game and decided to walk around and play alone, as he often does.

Screen Shot 2017-04-08 at 1.05.59 PM“That’s Little Bear!” I thought I heard a voice yelling.

Nah, it must be another Little Bear.

But I heard it again and again. And a mother confirming her daughter’s comments.

There was a little girl on the playground who knew Little Bear from Fancy Child Care Center. I introduced myself as his mother and talked to the child’s mother for ten or fifteen minutes. I apologized for my son’s disinterest in her daughter and let her know that he had ASD. She said she understood, although it was quite apparent from later comments that she didn’t. She revealed to me that her daughter had been one of his biting victims, although, seeing Little Bear’s delays, she didn’t seem especially upset by it. She brushed it off as, “She came home saying, ‘Little Bear was mean to me!’ and I told her that I know she’s been mean, too, and so have her friends.”

I explained about the ear tubes and their effect on his behavior. She asked who his ENT was because her daughter needed them. I gave her his name and information and she said she’d heard wonderful things about him. I told her how the fluid had affected his balance so profoundly as a baby that he didn’t walk until a week after they were placed. They were life-changing for him.

Then came the unsolicited advice and excuses, as it always does in these possible-friends situations. I expanded on his delays and she said she had read that children usually focus on one skill at a time, so maybe he was focussing on his gross motor skills rather than his speaking and social skills. She adjusted the amber bracelet on her daughter’s wrist as she explained this alternative fact mined from Google.

I didn’t want another mother to hate me and my child for his disability, so I, “oh, really?”ed while willing my eyes not to roll. Since I didn’t let them roll, I had to also try to fight back the tears that want to escape when I have to make the mother of a neurotypical child understand that my child is not neurotypical and will almost certainly never be neurotypical.

Her daughter tried to play with Little Bear. He would follow her when she ran, but he didn’t know how to interact with her. He just didn’t know what to do and it breaks my heart all over again.

But… in other news… today he said, “There you go” multiple times in socially appropriate situations. Also, he and his brother did an excellent job of taking turns playing a game on the ipad.

When autism is enviable

Two years ago, shortly after Little Bear was born, I became active in an online group for evidence-based birth information. I started chatting with a girl that was living in the country my best friend was born in and who had given birth to her first son in another country in the same region. Since she was living in Latin America and I was married to a man from Latin America, we had common interests and became occasional chat buddies.

When she became pregnant with her second child, our conversations moved towards sewing. She and I had both recently begun classes and we both used cloth diapers with our children. She was tight on money, so I sent her a box of cloth wipes that I no longer had a need for. She showed me her progress on diapers she was making for her second little boy, proud of the improvement she was making on each one.

In August of last year, our lives and our friendship took a dramatic turn as I dealt with the diagnosis of Little Bear’s autism and she dealt with her son being born with severe illness that was not immediately defined. At first they thought Down’s Syndrome, then they thought it was a heart defect. The newborn was airlifted to a larger hospital and mom was left with no answers and a thousand questions. I was similarly flailing for answers with Little Bear’s diagnosis. She was one of my anchors and I’d like to think I was one of hers. It was like we were both swimming in a sea of uncertainty and we were grabbing towards each other’s hands, hoping neither of us drowned.

Then, in November, we both received answers. Little Bear might not be autistic. He might actually have delayed myelination and outgrow many of his symptoms. We would repeat tests in a year to see. It was like a lifesaver of hope had been thrown to us and we saw so much improvement from his therapies, that we suddenly felt like we were coasting by.

Screen Shot 2017-03-16 at 11.52.03 PMMy friend also received the answers she waiting for, but it was no life preserver. No, she was thrown a pair of cement shoes: ARPKD. Her son had a genetic defect that had no cure. He would not live to adulthood. Possibly not even past early childhood, given the symptoms that were already evident at birth. Her world crumbled around her. Her boys’ father was no longer in the picture. Her baby was going to die. She felt that she was leaving her older son with nothing more than an absent father and a dead brother. My heart broke in two for her.

She took her older son to be tested last week. I waited anxiously for the results. I was certain he was fine. He was already four and asymptomatic. There was a 75% chance that he was carrying healthy kidneys and healthy genes. She texted me on Friday night with the results. Her older son was also affected. Both of her children would die before they were 21.

My heart broke into a thousand pieces for this friend. I’ve never even heard her voice, but I sat in my car and cried buckets for a woman I’ve only chatted with. I cried for a mother who would lose her entire world in one decade. I cried because I want to continue to hold her hand through this, but I feel that she may end up resenting me and my “problems” with Little Bear. My Little Bear who will one day be a Big Bear and have a completely normal life expectancy. We were two mothers navigating the waves of emotion that accompany the unknown medical diagnoses of our children and one of us was left with a non-neurotypical child and the other was left with two terminally ill children.

The guilt. I feel so much guilt. I have no reason to feel this guilt, but yet I feel it because I don’t think it’s fair at all for a mother like her to have to suffer through this. I feel it because I’m still upset about Little Bear, but Little Bear is growing bigger and stronger while her boys will eventually grow weaker and lose their kidneys. It’s not a fair friendship. I won the freaking lottery of problems compared to her. The goddamn lottery.

I put her in touch with another internet friend who has a son with a mitochondrial disorder. Her son’s life expectancy is similar to the poor mother who will lose her two boys. She has also already lost a child due to a surrogate who didn’t have a c-section early enough when there was a labor complication. She has become the new hand to hold for my online friend. She knows the drill. She also guides me on how to talk to this friend so that she doesn’t feel like I’m babying her or ignoring her.

Autism is a difficult disorder to deal with. Trying to peak into my son’s world and mind can drive me to tears at times. However, there are more and more moments when I feel like he’s left the window open – maybe even the side door – and I can see inside and really know him for a few moments before it closes again. I feel like there’s hope that one day he might invite me in for a conversation and we will know each other. This will continue until I depart this earth before him, as it should always be.

My friend has two children who are neurotypical in every sense of the word. They are happy, active, “normal” children with not a worry in the world. Happy, active, neurotypical children who will have to come to terms with their own mortality before they even begin to live.

I feel so guilty that I lucked out and got an autistic son.