Big Family Trip

Screen Shot 2018-01-05 at 10.19.11 PMOver the summer we took a trip up north to visit family in Washington DC, Pennsylvania, and New York City. It’s a trip we try to take every two years, since both sides of the family live in the region and the boys have cousins around their own ages on both sides. It was planned as a pleasant two week journey through three states and a half dozen cities tied around a work party that Papi Bear had to attend in Annapolis.

Unfortunately, Hurricane Irma put a fast halt to the trip about halfway through. We live along the south eastern coast and there was a chance that we would have a direct hit. We realized this while visiting my aunt and great aunt and uncle in a rural part of Pennsylvania. We had plans to spend a nice day with them in a local museum, but we had to cancel and run back to Washington DC so Papi Bear could fly home immediately and secure our house. I was left with the children, basically waiting and hoping we had a home to go back to. The hurricane was predicted to hit on a Sunday, if I recall correctly, and we booked our flight back for Tuesday evening.

I called my aunt in Washington and informed her of the situation. The children and I were now staying three days longer than originally anticipated. Her response was, “Where do you plan on staying during that time?” I was a bit taken aback. I mean… I had other places and I actually had planned on calling other family, but I had assumed that given the fact that a Category 5 hurricane might plow into our home, she would open her doors to her niece and great nephews for a few more nights. I told her we would be staying with my cousin who also lives in DC.

We arrived to my aunt’s house and I packed the majority of our belongings into my husband’s bag, since he had the big suitcase attached to his ticket. I mean hurricanes almost always turn and airports open within 48 hours… It’s not like we wouldn’t be home in five days anyway. The family spent the night together at my aunt’s house and my husband left first thing in the morning. I had the kids out the door soon after to play in the park and stay out of my aunt’s hair. It was predicted to rain anyway, so I wanted them to have some fun before the downpour. It was clear that we were only welcome there one more night and I didn’t want to push boundaries or luck. She’s an older woman and never married or had children of her own. I have not-so-fond memories of how she treated me as a child, so I didn’t want my own children to have those types of memories of her. So far she had only been good with them.

When we got home, my aunt gave the boys two matchbox cars from the dollar store each. Little Bear started fighting with Big Bear over his cars and showed some of his typical aggressive behaviors that he was displaying at the time, heightened by the fact that we were on vacation, out of our home, and out of our routine. After the second or third time of hitting his brother, my aunt slapped him.

I told her not to lay a hand on my child. She said, “Well, he needs it. You’re not disciplining him and that’s why he’s so spoiled.” I said, “He’s not spoiled. He’s 2 and autistic. He doesn’t understand. He has the cognition of an 18 month old.” She said, “That’s just an excuse. It’s a lack of discipline.” She went on to complain about Little Bear’s autistic meltdown the night before when he was starving in a Mexican restaurant that, no joke, did not have rice or eggs. She also complained that I allowed him to play with a fork, which is apparently the sign of a bad mother. I told her I was leaving. She said, “Oh, don’t be that way.” I told her that if she can’t accept my children for who they are, then they aren’t going to visit. I can’t change that Little Bear is autistic. He gets intense therapy to work on his behaviors and he is improving by leaps and bounds, but it should be expected that a week away from home is going to bring out more behaviors from him.

I packed our bags quickly. I paused to think about who to call. I settled on a friend in New Jersey who also has children the same age as mine. She is from the same city I currently live in, so she would understand what I was going through, since her family back home was in the same situation. She said yes, of course we could crash at her house for as long as we needed to. No end date given… as long as it was unsafe to go home, we were welcome in her home. And let me add another note… I met this woman on the internet two years ago and we were phone friends who had never met in person. She opened her house to us. My own aunt slapped my autistic child, called him spoiled, and asked where we planned on staying. Sit on that for a moment.

Before heading to New Jersey, we stopped to see family in Philadelphia that we hadn’t been able to see before. I have a cousin there who, with his wife, adopted a little boy at birth around the same time Little Bear was born. This was the first time we were meeting their son. We had dinner with the family and then headed to visit my friend.

Nikita and her husband live in an upscale town and have two beautiful children: a girl who is right between both of my children in terms of age, and a 9 month old. We arrived late, so the boys went to bed immediately. The following morning, Big Bear started to play with Nikita’s daughter TT. Big Bear and TT hit it off right away and, to this day, are still BFFs and ask about each other often. We have them speak on the phone and we’ve been able to get them together in Orlando as well, where they had a blast together. Considering how shy Big Bear is around new kids, I was shocked and thrilled at how quickly he and TT became friends.

Screen Shot 2018-01-05 at 9.46.05 PM.pngWe spent four nights at Nikita’s house. We visited the zoo together, went to parks, and on Saturday I went into NYC to visit friends there and relieve her of our presence (although she later said she wished we’d been around because Big Bear keeps TT out of her hair). On Sunday it was clear that our flight was at very high risk of being cancelled. I started to freak out. I just wanted to go home. Never in my life have I wanted to go home so badly. It’s not that I wasn’t grateful to Nikita for her hospitality – I was – but I just wanted to be in my own city, in my own home, in my own bed. I looked up car rentals to leave from DC (where my car was due back). They were only $9.95 a day to pick up in DC and return a hotel very close to our house. I sighed. Could I do it? Could I really drive all the way home?

I rented the car, packed immediately, and started back to DC.

We were driving home.

Our route was from NJ->DC, return car, rent new car. We would spend the night with a cousin who lives in DC and then drive to South Carolina to stay with my sister for two nights, then home.

Our first leg was 4 hours. I learned to count long car rides in terms of 2 hour distances during this drive. The kids could get through 1.5-2 hours with their favorite toy/book and then another 2 hours with the ipad and then they would usually be able to fall asleep from boredom, if we hadn’t already arrived at our destination by that point.

We arrived in Virginia early and I took the kids to Monkey Joe’s to burn off energy until my cousin got off work. I stopped at Target to do some shopping for winter clothes, since I had sent most of our warmer clothing back with my husband and a cold front was coming through. I also bought a pair of earbuds with a microphone to avoid driving and calling/texting.

We had dinner with my cousin and her children and I put Little Bear to bed in the living room. I took Big Bear with me to the airport to return the car. The following morning we went to the park outside her house to play for an hour or two and then started on our way to South Carolina to stay with my sister. Driving time: 8 hours. It was not nearly as painful as it sounds, although it was pretty damn painful. The boys were well-behaved and I talked to a few friends on the phone to pass the time.

We arrived at my sister’s house sometime in the evening and ordered dinner from a nearby restaurant. The kids refused to eat what looked like the worst mac and cheese ever. Whatever. I put them to bed and crashed with them.

We went to a local children’s museum the next day so that their trip wasn’t completely awful. We had dinner with my sister afterwards and played on the playground at her house. We had planned to leave early the next morning, but I was reading on facebook that the trip home was taking three to four times as long as usual once you crossed the Georgia border and that there was no gas in sight. I freaked out. I went to Walmart and bought a gas can. Filled it up. Loaded the kids. And we left for home around midnight. I made a reservation at a Disney resort for the following evening because I knew that there was ABSOLUTELY NO WAY that Disney did not have power at this point. It was an 8 hour journey.

I stopped and refilled at every gas station that I saw once I was a quarter tank down. I also peed in a Big Gulp cup twice when the inside area of the gas stations didn’t have attendants or the kids were asleep. It was awful.

The drive was dark and boring. I played Hamilton over and over and over. Big Bear woke up two or three times. Around 4AM I felt myself fading. I pulled over, attempted to nap. About 10 minutes in, Big Bear starts talking to me. I was crying, “Please let me sleep. Just ten minutes.” I did this again around 5.

When we hit Georgia, the lights were all out and the sides of the road were a parking lot. All of the exits were closed. The number of vehicles that lined the shoulder started off in spurts, but turned into rows after a while. All I could think was, “Thank god I left at midnight because otherwise these cars would all be on the road.” Followed by, “Those lucky bastards are probably sleeping.

We arrived at Disney World around 10AM. I’m pretty sure I cried when we parked. Pretty sure. Checking in was a nightmare of a wait, since our reservation wasn’t tied to their app and we didn’t have Magic Bands, since we had literally just made the reservation the previous night. After a meltdown (from me) from waiting in an endless line the second

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time – just trying to get my room number – a manager took us into a room, calmed us (me) down, and gave us three extra fast passes for the day.

We went to our room. I was totally 100% ready to sleep. Not the kids, though. They were bouncing off the goddamn walls. So I drove us to Magic Kingdom and we rode a few rides, heading back to the room around 5 or 6. We all crashed immediately and slept until 8 the following day. I don’t think I’ve ever slept that well in my life.

The next morning we checked out and went home to start the adventure of no electricity post-Irma. Luckily our house, cars, and property sustained only minor damage.

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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.

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.