On Sunday morning, we got an early start. With our new-found confidence in being typical tourists, we decided to get the most out of our day before we drove down to Portland. Fortunately, there were many more breakfast tables available when we arrived and we were able to sit at a regular-height table and in regular chairs. This worked very well. We had 3 little angels eating a big breakfast while a dog went unnoticed under our table. I was so happy, I could have ended the day right there. But, NO, there was more to come! We were a traveling family…on the go!
In the Jewish religion, we celebrate a holiday in the spring called Passover. During the service, we often sing a song called, “Dayenu.” This is roughly translated to mean “it would have been enough.” In the song, we sing versus about all of the things that G-d did for us and after each one we say, “Dayenu.” It would have been enough, but G-d did more. It is the epitome of gratitude. I would like to take a little poetic license and make my own version of the song:
We had a lovely breakfast and no one stared at us for having unruly children. -Dayenu
We walked around the observation deck and had a fabulous time looking through the telescopes at the city below. -Dayenu
We stopped and had a leisurely snack break at the top of the Space Needle. -Dayenu
We went to the Experience Music Project Museum. -Dayenu
We did all of these things very efficiently so that we checked out of the hotel on time and hit the road to Portland with no complications. -Dayenu!!
The trip to Seattle was nothing short of remarkable. Because of Hope, we were able to have a normal family vacation. Saturday morning, we ate breakfast in the restaurant before we walked down to the Pikes Place market. We ambled along the booths for quite a while until Zoe and Lena caught sight of the ferris wheel by the water. After buying a few trinkets, we wandered down various paths until we found ourselves in front of the ferris wheel. Although the sign stated that service animals were allowed on the ride, my general anxiety over heights made it too much for me to imagine bringing her. Barry volunteered to stay on the pier with Hope while I took all 3 kids in the ferris wheel. Even though Hope did not join us on our ride, I was grateful for the tether belt around Gray’s waist that usually attaches to her. Throughout the ride, I kept a tight grip on that belt to ensure Gray did not bounce around as we soared high above the city.
For lunch, we chose a seafood restaurant that looked good to Barry and ate a grand crab-cracking lunch while we looked out over the water. On the way to lunch, we had spotted an arcade complete with an indoor carousel. As a reward for good eating, we took the kids back to the arcade and finished out our afternoon there with the girls playing video games and Gray riding the carousel. Gray could not wipe the grin off of his face while he rode the world’s fastest carousel. Hope was a good sport. She lay under Gray’s bobbing horse and tolerated the spinning without complaint. By that time, it was 3pm and we decided to head back to the room for a rest.
This would be a good place for me to take a little break from the sunshine story. I gave the abbreviated happy version of our morning above because that is how I saw it: remarkable and happy. But, to be fair to you readers, I think I should add in a few details to make the picture a little clearer. Regardless of how great Hope is, Gray still has autism. In the morning at breakfast, Gray had a little meltdown because the only tables left were high bar-style tables with stools. That was a difficult setup for him resulting in quite a bit of wailing, so I ended up just walking him around the hallways and to the bathroom while Barry and the girls ate their breakfast. Fortunately, there was a swinging love seat on the rooftop patio so the kids had a great time with Barry pushing them while I ate a quick breakfast of my own. At the marketplace, Gray was easily irritated whenever we would stop to look at a booth. Barry and I had to take turns walking with Gray and Hope to allow everyone a chance to look at the things that interested them. When we returned to our hotel room for a rest/nap break, Gray was a little wired (manic, you might say). I took one for the team by letting Barry and the girls nap while I wrestled with Gray and took him around the lobby to prevent him from disturbing them.
My point is that, although traveling with Gray has real challenges, they are minor in the scheme of things because of Hope. On the way back from the ferris wheel, we had to cross a busy street. Gray apparently recognized something across the street and decided to run for it before the light had changed. I was distracted by something that Lena said and, before I knew it, I felt a sharp tug on Hope’s tether. That was the difference between Gray running into traffic and staying safely on the sidewalk with the rest of us. At one point, over the weekend, someone that I was chatting with at the hotel asked me if having Hope had made a difference in our family’s ability to travel. I just chuckled and told her that having Hope was the ONLY way we were able to travel. Considering the fact that we couldn’t even go to a mall or a street festival without a major tantrum or escape attempt, there is no chance that we could have braved the airport, the country’s most popular farmers market, and even a baseball game without Hope.
Yes. We ended our very busy day with a visit to Safeco Field to see the Mariners play the Angels. Barry is a baseball fanatic and the whole reason we added Seattle onto our trip was because he wanted to see a major league game in a different stadium. The game was great. The Mariners trampled the Angels (very good for Texas Rangers fans), we had really nice seats, and the kids had a ball (no pun intended). One perk of having a kid that needs a service dog: ushers at major league ball games make you feel extra special and give your kids all kinds of free memorabilia like baseball cards and signed baseballs!
Although traveling with Gray can be exhausting, don’t all parents feel that way about traveling with their children? That’s all I ask for. I just want to be equally exhausted as other parents. That’s what a summer vacation is all about, right?
I will start off by saying that the flight from Dallas to Seattle was about what you would expect for a typical family traveling with 3 children. It wasn’t the best flight ever, but it certainly wasn’t the worst.
It is really unbelievable…when Gray is attached to Hope, he goes where he is supposed to go without protest. He waited nicely for us to check our bags, he was patient in the security line and sat quietly at the gate waiting for our flight. I think that Hope truly acts as a GUIDE dog for him. Before her, I suspect that Gray never really had an idea of where he was supposed to be. It didn’t occur to him to look at the rest of the group and feel secure that we would guide him. He would just run wherever his interest took him and then get upset when someone tried to stop him. With Hope, Gray is able to relax in the knowledge that she will show him where he is supposed to be. Even when our flight was delayed and we had to change terminals to get a new plane, Gray just happily joined us. I can honestly say that he was the best behaved of our 3 kids for the majority of our trip.
When we finally made it on our flight, it was Lena who actually caused the most trouble with her multiple requests and spills. Hope was not thrilled to be on the plane, but, after climbing on Gray’s lap to watch take-off, she felt satisfied enough to get back down on the floor. Gray was generally happy with a few moments of frustration. Yes, there was the minor poop accident that made me rush to the back of the plane and ask the flight attendants to move their drink cart so we could get to the bathroom. There was the minor freak-out in the bathroom when Gray panicked at the sound of the toilet flushing. There was the fountain of juice that sprayed in a dark red arc over the window next to us and the row behind us so that we all looked like we had been involved in a messy murder. (Beware of those flip-top straw-style sippy cups on airplanes. They become pressurized during takeoff!) But, there was no hysterical screaming. There was no self-injurious behavior. No one was harmed en-route to Seattle. No apologies had to be made with autism as the culprit. We were just a regular chaotic family.
I must credit the majority of Gray’s good behavior to the immense strides he has made with his iPad. G-d bless that beautiful multi-purpose hunk of electronics! In contrast to last year, this year Gray has really taken ownership of his iPad. It was so wonderful to have him request the snacks he wanted and tell me when he had to go to the bathroom. Before, I would just have to guess (usually wrong) which snack he wanted and I would assume (apparently wrong) that his attempts to leave his seat were just attempts to escape as opposed to needing a potty break. It was also wonderful to see him entertaining himself with the downloaded videos or looking through family pictures before he fell asleep.
Ironically, just after take-off, Gray was brilliantly using his iPad to tell me about his snack and drink preferences when the flight attendant from first class poked her head through the curtain.
“Do you have any headphones for that device?” She was trying to sound pleasant, but she was annoyed.
“No,” I replied. “He won’t wear headphones. He won’t tolerate them on his head.”
“Well, you are going to have to turn that down. It’s disturbing the other passengers.”
I was going to let it slide. I smiled to myself thinking that she had no idea how lucky those other passengers were. But then, Barry piped in.
“Um, that device is actually his voice. It’s how he speaks. Perhaps the other passengers could turn their voices down?”
She had no reply. She simply returned to the sanctity of her first class cabin. Sheesh! What is it with first class flight attendants?
Let me apologize to all the people who know me and saw the title of this post. I know there are people who are thinking about me and the flight I am about to take with my family to Seattle and Portland. I am not writing about that flight. I intend to include that in my next post after we arrive. Instead, I thought it would be interesting to give you readers a flashback to the worst flight our family has ever endured. That way, when I talk about the one we are taking this week, you will have a point of reference.
The “worst flight ever” took place two years ago when we went on a family vacation to the Caribbean. We had a 4-hour direct flight from Dallas. Traversing the airport wasn’t too bad because both Gray and Lena were still using strollers. Getting through security where we had to give up those strollers and walk one-at-a-time through the scanner was a bit of a problem. It was sort of like the riddle about getting a fox, a chicken and a bag of corn from one side of a river to the other. Barry and I had to carefully sequence our times to walk through the scanner to keep Gray from making a mad dash across the airport. In anticipation of Gray having a hard time with sitting in one place for that long, I gave him a Benadryl just before we boarded the flight. After we got settled in our seats, Gray started to fall asleep. Unfortunately, that is when Lena started asking for things and crawling over her brother. This got him revved up and he spent the rest of the flight super-tired but unable to fall asleep. In other words, Gray was miserable. We had just started using the iPad for communication and he wasn’t really very reliable with it yet. He didn’t see the value of using it and, therefore, had very little interest in it for communication or entertainment. That meant that I had nothing to hold Gray’s interest other than snacks.
In a nutshell, Gray spent 3 of the 4 hours on the flight trying to get off. He did not want to stay in his seat and he did not want to be on that plane. He screamed and he flailed. He flung himself into the aisle and grabbed onto anything he could reach as Barry and I took turns dragging him back into our row. Our row was the first behind first class: the bulkhead row. This was helpful because Gray could sit on the floor and Barry and I could block him with our bodies to keep him from escaping too often. This was also unfortunate because the passengers and flight attendant in first class were very upset with the noise level that was so close to them in the steerage compartment. The flight attendant kept pulling at the curtain that divides the two cabins as though the transparent piece of mesh could act as a sound barrier. At one point, she poked her head through the curtain and questioned Barry:
“Can you do something to control your son?” She said this as I was literally laying on top of Gray on the floor while he writhed around beneath me. “What exactly is he so upset about? Does he dislike flying?” Let me be clear. There was no sweetness or understanding in this woman’s voice. She was obviously just annoyed with us for being such laissez-faire parents. She thought that it hadn’t occurred to us that his behavior was a problem.
Barry gave her a wide-eyed confused look and replied, “You know, I really have no idea how he feels about flying. He won’t tell me because he can’t speak. You see, he is severely autistic and likely mentally retarded so I just don’t know what his travel preferences are.” –I know, the mentally retarded statement is offensive, but Barry was going for effect. And it worked. The flight attendant just closed her mouth and went back behind her mesh curtain. The man sitting next to Barry just laughed and said, “I don’t think she is going to be coming back!”
Let me say that the other passengers on the flight were incredibly kind and understanding. No one gave us dirty looks or complained. As I sprayed apologies across the cabin like an old lawn sprinkler that rotates clockwise across the lawn before ratcheting back to start again, the people around us tried to console me. They were sorry that he was so unhappy and they offered many (unsuccessful) solutions. People offered us toys, snacks, and video players. Of course, I realize this was an act of self-preservation on their parts as much as it was an act of kindness, but I appreciated their efforts nonetheless. At one point, I tried walking Gray down the aisle to let him move around, but that just gave him the opportunity to share his tantrum with the rest of the plane. I guess the people at the back who were wondering what was going on at the front may have felt pleased to finally know the answer, but I suspect that their pleasure quickly wore off when Gray got to each row, grabbed the person on the aisle and screamed in his or her face.
While I stood there, in the aisle, trying to prevent Gray from assaulting people, I absolutely considered the possibility that the pilot might have to land the plane and eject us from the flight. Mercifully, Gray fell asleep about 40 minutes before the flight landed. We decided to stay in our seats to let the other passengers off when it was time to deplane. I didn’t know how Gray would react when we woke him to get off the plane. I figured that the other passengers had endured enough and deserved to peacefully escape the nightmarish flight we had created.
At least half of the people who passed us on their way out said something kind or gave us sympathetic looks. I don’t know how we did it, but Barry and I survived the flight in an amazing show of teamwork. Our flight home was much later in the afternoon and we spent the day wearing Gray out on the beach to ensure him sleeping on the flight.
For our trip to Seattle and Portland this week, I carefully selected our flight to let Gray have a morning of activity at camp before we go to the airport. I pray that my plans will work out.
The 4th of July is one of my favorite holidays second only to Thanksgiving. I love it because everyone can celebrate it together regardless of religion or cultural background. It feels like an amazing day of community bonding with an acute focus on children. In my neighborhood, the holiday runs in the same traditions every year. In the morning, there is a big parade down the main street of our neighborhood with all of the residents of that street throwing their own front lawn breakfast parties. We always go to my friend’s house as she has the perfect yard for catching candy and beads that are thrown from the homemade floats that go by. I have many many happy memories of Independence Days past. All of my babies have sat on that porch to watch the parade and all of my toddlers have stood in the street to catch the trinkets as they shower down.
Unfortunately, about 3 years ago, we had to start leaving Gray at home with a babysitter while the rest of us went to the parade. The last time Gray went to the parade was 4 years ago when I was still in the hospital after delivering Lena. Barry and a babysitter took Zoe and Gray to the parade. The babysitter spent the whole time following Gray around trying to keep him from running off into the crowd and scooping him up from where he lay on the sidewalk throwing a fit because he couldn’t run away. It was an exhausting time for everyone.
This year, because of Hope, I felt brave enough to try again. When we got to the parade party, Gray walked nicely with us across the street and into the house. He waited patiently while we said hello to everyone and gathered some snacks before the parade began. We found a spot on the lawn to sit and wait and Gray climbed into my lap with Hope beside me. Unfortunately, it was only a few minutes before Gray used his iPad to tell me that he was ready to go home. I told him we were waiting for the parade and he got upset. Because of Hope, I was calmly able to gather him up and we took a walk down the street to look for the first floats that hadn’t made it down our way yet. As long as we were walking, he was happy. We returned back to the house after about 20 minutes and Gray tolerated 10 more minutes of parade watching on the front lawn. After that, we went inside. He immediately tried to run around my friend’s house looking for trouble, but his tether to Hope kept him from getting far. Eventually, we were able to sit at the table and have snacks. When Barry and Lena came back in the house, Gray curled up on Barry’s lap and fell asleep. It wasn’t a perfect experience, but it was worlds better than years past.
In the evening, we made a plan to go to the country club to swim and eat dinner before the fireworks began. This would be Gray’s first experience with fireworks. It should be easy to understand why I did not feel comfortable taking him in previous years. The concerns I had about him running away in broad daylight were only multiplied when I considered pitch black, hundreds of people and fire shooting up into the sky. But, once again, Hope’s presence gave me the confidence to try it this year. Just for extra insurance, we brought along one of Gray’s therapists and had an extra car in case he just couldn’t stay. I made a social story on Gray’s iPad explaining how the fireworks would go. It is only recently, that Gray has had any interest in social stories. I am so impressed by his recent improvement in this area. It makes worlds of difference when he can be prepared for an upcoming situation and the behavioral expectations that we will have for him. Thankfully, the “Stories2Learn” app on the iPad makes the writing of these stories incredibly easy. We read the story a few times before we headed up to the pool. I told him how we would sit on a blanket and wait for the fireworks to begin. I told him how the fireworks would be loud and colorful. It worked like a charm. When the time came to move out to our seats on the golf course, Gray and Hope walked nicely and took their place on the blanket beside me.
I could not believe how patiently Gray sat while waiting half an hour for the fireworks to begin. We went through the social story a few more times. Then, the big moment arrived. The first explosion went up and the sky filled with light. Hope was not a fan. She stood up and tried to move away from the scene in front of us. I pulled out a stash of hot dog pieces and popped them in her mouth while settling her back down with some deep pressure. I sat her between my knees so I could keep the deep pressure and hot dogs going. Barry joked that I would soon be riding her down the hill like a horse. On the other end of the spectrum was Gray. He stared up at the sky with a wide grin on his face. The wonder and pleasure in his eyes nearly brought me to tears. I felt so happy to let him experience something that made him so happy. As we walked out to our car among the dense crowd of people, Gray strolled calmly alongside Hope with a sweet grin on his face. It was an amazing night.
Yesterday was Lena’s birthday. She is now officially 4-years-old. When I look back on the last 4 years, I can hardly believe what a blessing she has been to our crazy family. When Barry and I were first married, we always planned to have 2 children. When I found out during my second pregnancy that I was having a boy, I felt happy and satisfied that we would have the perfect little family of 4 with a daughter and a son. Even as I walked into the hospital to deliver Gray, I remember thinking that I would not be back again. So, it was a big surprise when, only hours after Gray was born, I told Barry that we still had one more child to go before our family could be complete. I remember the perplexed look on his face. I don’t know if he took me seriously at the time. He just said, “Perhaps you shouldn’t make any big life decisions until after we get home.” But, deep in my heart, I knew that I had one more visit to labor and delivery on the horizon.
At that point, I was 34-years-old and I knew that I shouldn’t really wait long to have another child. My plan was to space Gray and the next child out about the same as Gray and Zoe. That meant that I would try to begin my next pregnancy around the time that Gray was 18-months-old. Of course, that was the exact time that the wheels were coming off here in Casa Golden. If you have read The Back Story, you know that Gray was diagnosed with autism when he was 19-months-old. That means that for the 6 months leading up to the diagnosis, I had spent all of my time taking Gray to doctor appointments, therapy appointments, researching specialists and generally panicking. I was in no position to consider having another baby. And yet, the thought persisted.
I told Barry that I needed another year to get things stabilized, but we absolutely needed one more child. He really thought I was crazy, but he also really liked being a father and liked the idea of sitting at the head of a table with lots of little faces turned his way. And so, a year later, Baby #3 was on the way. Prior to getting pregnant, we took Gray to a geneticist to test for any genetic problems that might have caused his autism and could increase the likelihood for future children. The doctor found no genetic abnormalities (according to the technology that was available in 2008). At that time, the rate of autism diagnosis was 1 in 150 children. The doctor felt that, with a sibling on the spectrum, the chances of a subsequent child having autism was roughly double. Although that sounded like a scary statistic, it did not deter me. It was worth the risk.
I found out that I was pregnant with Baby #3 when Gray was 2 1/2 and just days before Zoe’s 5th birthday. Barry would joke and say, “You know, no one is going to feel sorry for us anymore for having a kid with autism. Having another kid pretty much tells the world that we must have things under control.” I would joke and say, “Well, at least I have a good handle on what doctors to see and where to get the best therapy. I can’t burn any bridges with Gray’s caretakers in case we need to start all over again with the new kid.” But, I won’t lie. It was a scary time. When we found out that we were having a girl, I felt relieved. Autism rates are dramatically higher in boys. After Lena was born, I would take her to Gray’s therapy sessions and let his therapists hold her in a ploy to get free developmental evaluations. It really wasn’t until she was about 2-years-old that I was able to fully relax and know that Lena would be just fine.
From the beginning, Lena has been an easy-going and tough little kid. She is calm, happy and forgives easily. She is also a natural caretaker. From the time she started speaking in sentences, she has voiced her concern over Gray. If she and Zoe get to do something fun, she wants to make sure that Gray is included or gets to do something that he will enjoy just as much. It is clear that she knows he needs special consideration. Additionally, Lena has been a “reset” button for our family. With her arrival, our family got younger again and any frustration over Gray’s incredibly slow pace in development was eased. Gray’s interests have been well-matched with Lena’s over the last few years and, although Lena has now surpassed him, she has been a good friend to share toys and silly tickle games and “baby rides” at amusement parks. She has also been a good reminder of the things Gray needs to work on. Watching her normal development in tandem with Gray’s slower pace has helped me see specific areas where Gray needs extra therapy — like playing with toys, watching cartoons, sitting in a movie theater or eating at the table with utensils. She was also the impetus that started us on the path to medications for Gray. Although Barry and Zoe and I were tolerant of Gray’s physical outbursts, it wasn’t until he started attacking Baby Lena in her bouncy seat on the floor that we knew we had to get his violent mood swings under control.
Yes, Lena has been a blessing in every way. But, most importantly, she is a fabulous kid in her own right. She is smart and friendly and compassionate. I have no doubt that her sweet spirit will help her become an amazing adult. For now, I will savor every moment I can with the beautiful child who has enriched our lives beyond measure.
Happy birthday, Lena Mae!