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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New Year, New Milestones

I have seriously slacked on updating this blog due to a number of life events that have occurred in our family. Everyone is healthy, thankfully, but real-life often complicates taking the time to sit down and write it out, so forgive my lateness in updating.

Little Bear is now about 18 months into his autism journey and he is progressing in stops and spurts. This is not a negative thing, mind you. Progress is progress. Little Bear simply internalizes his lessons and shocks the heck out of us all after a month of doing absolutely nothing.

For example, he just started saying “I want (noun)” clearly over the past month after intense pushing from his therapists. He no longer signs and does not require much prompting to do it, although he rarely says it spontaneously. That said, today we were having New Year’s Day dinner and his brother stood up to leave when he was finished with his dessert. Little Bear yelled, “BIG BEAR! EAT! Mama! Big bear! Eat!” He was tattling on his brother! Little bear was yelling at me to make his brother sit down and eat the rest of the food that was on his plate!

We have also come to realize that Little Bear adores music and being on stage. He first showed us this at a Halloween festival near our home. They had a stage set up and a DJ playing pop music. All the kids were on stage in their costumes dancing. When they came down in a conga line, I tried to get Big Bear to go in, but he refused. Little Bear, however, pushed himself into the line and followed the kids back on stage, where he danced away for a good 30 minutes, watching the other children and imitating their moves. When the police chief of the city came on stage and asked them to take a seat, he took a seat, just like all the other children. He repeated this love of dance at his school’s Christmas show. When the class finished singing the African Christmas Carol and Oh Dreidel, there was  a pause and Little Bear looked around, started clapping and yelled, “YAY!” Giving the rest of the audience permission to cheer. We are thrilled to know that he enjoys the stage and we plan on signing him up for salsa lessons as soon as he’s old enough as well as theatre classes.

He also loves to imitate cartoon characters. His favorite movie is definitely Lego Batman. When Batman reveals himself in the beginning, he goes up to the screen and says, “NUTS? Come on! Nah-nah NUTS!” (“Nuts? Come on! Let’s go nuts!”) and then dances/sings to the rest of the song. The Many Adventures of Winnie the Pooh is another favorite, as well as the live action version of The Jungle Book.

His vocabulary is growing by leaps and bounds. He does three and four word combinations to try to explain what he’s observing. He’ll look out at the daytime sky and say, “Black. Moon. Night.” Trying to explain how it’s different from the daytime sky.

Empathy has begun to emerge. Yesterday his brother fell, scraping his foot and breaking his lego castle apart. He started bawling (mainly over the legos). Little Bear went over, pat him on the head and said, “Sana sana. Sana sana.” My heart melted into a warm pool of pride.

As for a few of the difficulties…

He still isn’t completely potty trained, but he urinates in the toilet whenever we take him in and has very few accidents. He has a lot of work to do with poop. He neither holds it in nor tells us. It’s been a few weeks since he’s pooped on the toilet at all.

We finally got an appointment with neurologist number 2 on our insurance list. We are extremely unhappy with his original neurologist and his lack of interest in even opening our son’s file before appointments. We wanted to switch to another doctor in the office, but they wouldn’t let us. It took a year of calls to get an appointment with the second office our insurance offers appointments with. My husband called on Thursday to confirm the time/date of his initial appointment. The secretary informed us that the doctor was retiring and letters had been sent (we didn’t get one, although a friend whose daughter goes there did that same day). They wanted to make us wait another three and a half months. Keep in mind… This was 10 months of calling just to make the appointment. Then another 3 months of waiting for the appointment to come. The appointment is less than 3 weeks away. And they canceled it. Livid is not the word. My husband put in a complaint to the supervisor. I put in a complaint to the insurance company. Within 24 hours they were miraculously able to move us to another doctor who has an opening on the 10th. Hopefully his old neurologist can get his paperwork there in time.

And this is where we are right now. We’re on winter break from school. We’re very happy with Little Bear’s progress and the future is not nearly as uncertain and terrifying as it was a year ago at this time. All of Little Bear’s therapists seem confident that he will be one of the lucky children who grows up to be high functioning and have an independent life where autism doesn’t hinder his ability to function in society.

Happy Birthday, Little Bear!

We’ve been missing in action because Little Bear turnScreen Shot 2016-08-20 at 12.55.28 AMed TWO last week! We took him to Disney World to celebrate.
Disney has a special pass to let ASD kids wait in line without actually waiting in line. I highly recommend it for any family with a child on the spectrum. It was life-altering for us.

We actually almost missed Disney because he spiked a 105.8 degree fever on Wednesday night. We took him to the hospital. Twice. Luckily it was gone by Friday morning and all he had left on Saturday was a bit of a rash. We were good to go and we’re glad we went! The boys had a wonderful time on Saturday. Sunday was a bit stressful and we ended up cutting out early because both of our little cubs were exhausted from a long week.

So… happy birthday, Little Bear! May your life be filled with love, happiness, and success. Mama and Papi Bear love you with all their hearts. And probably Big Bear, too, although he doesn’t say it.