The zoo went so well, I decided that we were ready for the big leagues. This morning, I decided that we were going to try Six Flags Over Texas! Because Gray is such a sensory seeker, I knew he would love the rides if I could just keep him from melting down or running away. In anticipation of Hope’s arrival, I bought memberships or season passes to several points of interest around town. I figured that would take the pressure off if we had a rough trip or wanted to end early to keep things from heading south. With a season pass, I don’t feel pressured to get the most out of my expensive ticket, I can just say, “That’s enough for today, we will try this again soon.”
This week is the perfect week to try these adventures because Gray and Lena are on spring break, but Zoe is not. Of course, Zoe is fun to be around and she tries to be understanding of the limitations that surround her brother, but I knew that her normal 9-year-old needs would NOT be met on any of the outings we were taking with Gray this week. On the other hand, Lena is the perfect companion for Gray. She has a similar activity tolerance and energy level. Also, she is blissfully ignorant to anything that we might be “missing” by going on limited rides or leaving early. I have often thought, “Thank goodness for Lena.” She is an anchor that keeps me from feeling held back by Gray. Without her, I would constantly be mourning the lack of “big kid” stuff that we couldn’t do with Zoe. I would blame it on her brother and, I fear, she would blame it on her brother as well. With Lena, we are brought back to the activities and tolerance of a normal 3-year-old level (which is a level much more suitable to Gray). That way, any big kid stuff that Zoe misses can be blamed on her little sister. That seems healthier to me!
As we made our way into Six Flags, it was apparent that this was a crazy week to come. Beautiful weather and city-wide spring break equals unbelievable crowds. I took comfort in the fact that Six Flags has a policy of issuing a wristband to guests with disabilities that allows entrance to the rides through the exits, thereby avoiding waiting in line. Unfortunately, we had to go to guest services to get that wrist band and the line there was very long. Added to that problem was the fact that Gray spotted a poster advertising burgers and fries by the entrance. Once he saw that, he was set on eating lunch. He kept hitting “burger” on his iPad and wailing as I looked for a manager at guest services to plead my case.
I made my way through the crowd and found a manager who was directing guests. I asked her how we could quickly get our wristband. She told me that we would have to wait in the line among other guests with varying needs including those with other disabilities. Although I am not regularly a person who tries to cut in line, I tried explaining to her that my son’s disability is that HE CANNOT WAIT IN LINE! She actually tried arguing with me about being fair to the other guests while he screamed and fell on the ground and grabbed other people in line. When a person ahead of us in line offered to let us go ahead of her, the manager finally relented and took us to the back door to get our wristband. I thanked her profusely and she gave me her direct number so we could give advance warning before our next visit. –Good idea, Six Flags! Let your autistic guests call ahead so they can just do a quick pick up instead of waiting behind people who want to pick up coupon books. That way, we don’t have to suffer the meltdown and the other guests don’t get assaulted by a crazy kid who is attached to a dog.
After we got that task conquered, we needed to immediately search for that burger and fries. Once I made it clear to Gray that we were making that a priority, he calmed down and walked nicely holding Hope’s handle. Let me re-emphasize, the park was PACKED with people. We had to weave our way through the crowd to find a place to get Gray’s specific lunch request. I marveled at how nicely he moved with us. His head swiveled around as he took in all of the sights, sounds, and smells. Without Hope, he would have been too overwhelmed by all of the manhandling I would have had to do to get him safely through the crowd. He would have dropped to the ground or run away. With the tether, Gray and I both felt relaxed and safe to just take it all in. As far as I was concerned, we had already made the trip a huge success. To walk through that many people with that much stimulation and have no problems was truly amazing.
After we secured some french fries, the rest of the trip went very smoothly. Gray and Lena enjoyed the kiddie rides, and Lena especially enjoyed riding with her brother. The lack of waiting in line allowed us to move efficiently from one ride to the next and we left 2 hours later feeling like we had enjoyed a full day. It was perfect. This marks the first of Gray’s school breaks where I have enjoyed the time together instead of dreading what I would do with him all week. Watch out world, we’ve got a new lease on life.
Spring break. Family vacations, sleeping late, relaxing at home, quality time…right? Well, historically, not so much for my family. Any time Gray is out of school, I have typically felt dread which leads up to a near panic attack as the “break” gets closer. You see, Gray has no leisure skills. He doesn’t play with toys. He doesn’t play with other kids. He doesn’t even really play independently on playground equipment. Staying at home is not a whole lot of fun. Of course, going out places hasn’t been a lot of fun either. Spring break means that all the fun places are super crowded and the person in charge of Gray has to be hyper-vigilant.
This year, I did not feel panic. Slightly nervous, yes. But not panicked…hopeful that things might be more fun. So, I decided we would try some fun outings. First stop: the zoo.
As we entered the zoo, the first thing Lena requested was a ride on the carousel. I got in line to get the tickets and Gray started getting upset. He whined and screamed and pulled towards the ride. I was grateful for the tether on his waist that gave me a strap to hold onto while I tried telling him over and over, “we have to wait to buy tickets, then we can go ride.” He didn’t seem to care for this explanation. After we had the tickets, we had to wait again for a short while to get on the carousel. This was painful as well. When our turn came, the ride operator looked at Hope and started stammering. “Umm, I’m not sure if she can get on this ride. I don’t know where she will go.” She was a sweet girl, but there was no way she was going to stop my momentum. I just said, “It’s fine. She is a service dog. She will be fine.” Gray and Hope and I climbed up on the carousel and he climbed up on a horse. Then, he climbed down. More whining. I directed us over to a stationary bench and he settled in with Hope at our feet. When the ride started, he got a big smile on his face. A big lovely smile.
After the carousel, we spent over 2 hours walking around the park and stopping for a leisurely lunch. Gray didn’t have much interest in the animals, but he seemed content to walk around and take in the surroundings. His favorite part was the water features. We had to stop and look at every waterfall, stream, lake and penguin tank. At first, I urged him to move along so we could see the big animals and the other “good stuff.” Then, I realized, this was his good stuff. If he was being good and patient with everyone else looking at the animals, then we owed it to him to be good and patient while he admired the water. I’m sure that the people who design the water features would be very happy to know that they are being appreciated!
On the way out, Lena begged to go on the carousel again. I flinched. We had experienced such success, I wanted to end on a happy note. The line at the carousel was twice as long as it had been when we entered the park. I had to decide: whose meltdown would be harder to tolerate? Gray in the line, or Lena begging and wailing all the way home? As we got closer to the ride, I remembered that the whole purpose of this trip was to let Gray practice good behavior out in the community. If I ever wanted him to learn how to wait in line, how could I expect that to happen without lots of practice? We headed over to the carousel.
This time, Gray just whined while we were in line, but he did not drop to the ground. When we went towards the carousel, Gray tried to run up to the front of the line, but I directed him to grab the handle on Hope’s pack because we needed to wait our turn. He calmly followed to the back of the line. Then, he waited patiently while he watched the carousel go around. When our turn came up, he scrambled up onto a horse and did not get down.
Everyone left the zoo with big smiles…especially me.
On Sundays, my parents usually come over and spend time with us. They love the kids and Gray especially loves my dad. They have had a very strong bond since Gray was an infant. This weekend, they came over a little earlier than usual because they wanted to see Hope and Gray in action. We decided to go to the park.
It was a beautiful day and everyone felt happy to be outside. The girls had a great time on the playground and managed to talk their grandfather into buying them treats when the ice cream truck came around.
Gray loves the park, too. I think he loves the high-energy environment and the sensory input he receives there. Because he is such an elopement risk, we generally just head straight to the swings and stay there for the entire trip. That way, I can keep an eye on the girls while they play on the different pieces of equipment and I don’t have to keep worrying about Gray running off to something dangerous. He is happy on the swing and can easily stay there for over an hour, so it generally works out. The only problem that can arise is when the swings are all full and we have to wait for a turn.
But, this time I wanted to show my parents how Hope and Gray explore together, so we did not hit the swings right away. Instead, we walked up a large hill to get to the park, then we sat on a bench for a few minutes, then we walked down to the path by the lake and, finally, we made our way up towards the swings. I never would have been willing to take that stroll without Hope by Gray’s side. I would have been too nervous that he would try and jump in the lake or run to the parking lot or grab another kid by the hair.
This time, our stroll went smoothly. But that’s not all. This time, Gray played on lots of different kinds of equipment. This time Gray walked along the concrete retaining wall on the edge of the playground like it was a balance beam. This time, Gray took a few breaks and just sat on a bench to look around. When I tried to think back on all of the surprisingly “normal kid” things that he did, I tried to think about why I never saw him attempt those things before.
Of course, I immediately attributed the change to Hope and the effect she has on Gray. Then, I realized. This trip to the park was not different because Gray had a different attitude. This trip was different because I had a different attitude. I felt comfortable letting Gray explore and experiment because I wasn’t fearful for his safety or the safety of others. Having Gray tethered to Hope allowed ME to relax and that allowed HIM to relax…and act more normally than I had ever seen.
By now, anyone reading my blog has probably figured out that Gray is not the Rainman version of a child with autism. He is not just a quirky kid who would be eligible for a mainstream education someday. He is not strong in some areas and weak in others. He is weak in pretty much all areas except for maybe a short sprint event. Gray is severly disabled. I think that this is, in part, due to the fact that Gray has other diagnoses besides just autism.
For example, Gray also has a diagnosis of Childhood Apraxia of Speech. This means that the part of his brain responsible for coordinating the movements in his mouth and throat is not functioning properly. When Gray tries to speak (which he does pretty often), it comes out as a completely unintelligible jumble of sounds. There are other people who have this diagnosis who can learn to be successful talkers with lots of intense speech therapy, but (after years of intense speech therapy) it is clear that Gray’s other cognitive and general language problems make this an unattainable goal right now.
Gray also has a diagnosis of bipolar disorder. Simply put, this means that he cycles through episodes of highs and lows. In Gray, the lows are periods of crying, head-banging, biting himself or tearing at his clothes and general distress that may or may not have a clearly identified cause. These periods are hard to watch because you feel badly for the little guy and want to help him, but generally, you just have to wait out the storm.
The highs, or mania, are another thing entirely. For Gray, when mania takes over, it is like he has been possessed. He runs around the room, laughs hysterically, knocks things off tables, pulls people’s hair, pinches, slaps, climbs furniture, and generally causes rapid destruction. It’s scary. This is not bad behavior that can be reached with discipline. This is a physiological change that affects his whole body. His eyes look wild, his face turns red, he drinks incredible amounts of liquid, he urinates or defecates many times per hour, and he is clearly unreachable by any outside intervention.
That’s where we have been for the last couple of days. Gray’s medications are meant to address this problem, but I am astounded by his body’s ability to break through this medical intervention. Unfortunately, Gray’s medications are in constant need of adjustment. We will be adjusting again, I guess.
It is clear to me that this is not an area where Hope can help Gray. She is, after all, just a dog. This is one of the situations that makes me glad I got our dog from ASDA. As I have mentioned before, ASDA trains their dogs to cope with a range of “autistic” behaviors without getting upset or frightened. During training, the dogs experience gentle slaps and hair pulling and startles with immediate treats given afterwards. This teaches the dogs not to see things as a threat. It is up to me and Gray’s teacher to make sure and keep this up so that Hope doesn’t become adverse to Gray and his crazy behavior. There have been LOTS of treats for Hope this week. G-d bless her calm demeanor. She is a model for us all.
We are members of a country club. We don’t play golf or tennis, but we joined because it is really close to our house, it has a great pool where all the neighborhood kids go, the gym is nice, and the kids really like it there. It is also a very civilized place. That’s the part where we don’t fit in so well. I could say a lot of nice things about my family, but civilized comes last on my list. Understandably, I was nervous bringing Gray there for dinner with Hope. Of course, I have brought him for dinner there before, but before Hope, we could slip in unnoticed and make a quick dash out the door if he started getting out-of-hand. It’s hard to move around under-the-radar when you travel with a large black dog.
Of course, things are different now; we are not just trying to get through meals as quickly as possible. Now, our goals have changed. Now, we are learning to go out for a nice dinner and sit nicely and act civilized. So, I figured we need to climb this mountain and start practicing manners in the most civilized place that will accept us.
Things did not start out very well. Although we walked in without problems, once we got inside, it became clear that Gray had his own agenda. He did not want to sit at a table and have dinner, he wanted to go to kids club. That’s the snack-filled babysitting room where kids can hang out while parents go to the gym or have a super-civilized dinner. Unfortunately, kids club was not an option. We were going for a family dinner and we were ALL GOING TO ENJOY OURSELVES! Well, let me correct myself. Barry was planning to hit the gym while I had dinner with the kids and one of Gray’s fabulous therapists. As the hostess lead us to our table, Gray started getting upset and pulling away from the room. I used the magic of the tether and handle on Hope’s service pack to keep Gray moving along towards our table. Barry looked worried. The girls were oblivious. As we got into our seats and Gray started getting whipped up, I looked up at Barry and said, “Get some Nilla wafers from kids club! Go! Go! Go!” Barry took off in a full sprint.
The girls settled into their seats and started talking about Shirley Temples while Gray’s therapist and I tried to keep his screams down to a dull roar. I started putting my hand over his mouth on each screaming exhale. The therapist pulled out Gray’s iPad to encourage him to communicate or watch a movie. As Barry came running back with the cookies, I broke them into pieces and offered them to Gray. I even put one in his gaping mouth. He nearly choked on his next pre-scream inhale. Finally, he took his iPad and said, “I need to go to the bathroom.” So, we pulled Hope out from her calm seat under the table and Gray was escorted to the bathroom (screaming the whole way) with the therapist and I flanking him on either side. Barry stayed behind with the girls. He looked distraught.
As we made our way to the bathroom, a woman started walking with me with a sweet look on her face. She said, “I know you are feeling stressed right now, but you should know that we are all rooting for you. We all have kids and we have all had to live through meltdowns. Everyone understands that you are in a difficult situation and you just need to practice this a few times. Hang in there.” I was floored. I could not imagine that someone would be able to choose such inspiring words for such a humiliating situation. It was like a fairy godmother appeared to encourage me!
When we got to the bathroom, it was clear that Gray did not need to go, he just wanted an escape. I decided to take him for a walk in the parking lot to cool off. His therapist ran back to the table to ask Barry to order a burger and fries for Gray. As we walked through the parking lot, Gray began to calm down. This was a luxury that would not be possible before Hope arrived. There is no way that I would walk with an upset Gray in a parking lot without that dog. Gray’s therapist came out to join us and let us know that the food was on the way. As we returned to the front door, I asked Gray what he wanted. As soon as his therapist presented his iPad, he said “I want to eat hamburger.” I told him that there was a hamburger at the table, but he needed to walk inside quietly to be able to eat.
And that’s exactly what he did! As he sat down nicely at the table and started eating his dinner, I looked over at Barry to tell him that he was free to go to the gym. He just held up a glass of scotch that he was drinking and said, “I changed my mind.”
Today, Gray had his regular speech therapy appointment at the Callier Center for Communication Disorders. Gray has been going here since he was first diagnosed over 5 years ago. He is comfortable here and he knows the expectations that are placed on him when he enters his therapist’s office. For that reason, he does not need to wear the tether during his speech therapy sessions. Hope is placed in a down-stay near his seat and snoozes during therapy.
Unfortunately, today was fire drill day. Ironically, Gray was not too upset with the loud noise and strobe lights. He is a sensation seeker, so he kind of enjoyed the crazy change of pace. Hope did not enjoy it. It’s funny, because Kati said that Hope never really had a hard time startling at loud noises. She has always taken those things rather well. But, today, when that fire alarm went off, she jumped to attention. She kept moving from the office door back to Gray. She didn’t whimper or bark, she just kept hitting Gray with her nose and then walking back to the door. When that didn’t work, she just sat and trembled. No amount of reassurance or offering of treats made her feel any better. She did not relax until the drill was over.
So, what was that about? Gray’s therapist and I think that Hope was trying to make Gray evacuate. She was worried that he might be in danger. When he wouldn’t leave, she just hunkered down next to him and braced herself for the worst. Amazing sweet dog.
Today, I had to take Gray to the dentist. Afterwards, I really wanted to have lunch in my favorite barbecue restaurant that is near the clinic. I wrestled with the decision. Normally, I would just hit a drive-through and let Gray eat safely buckled in his car seat. The safe choice that would still allow us to practice our new dining out skills would have been to just go inside the fast food restaurant. That way, I wouldn’t care so much if he acted crazy. “But, no,” I told myself, “I want to go for barbecue and we should do that.”
Even as I pulled into the near-empty parking lot (it was still early), I felt some concern about the wisdom of this decision. When we walked inside and got in line, I ordered our food to-go…just in case we needed to make a quick tantrum-fueled exit. While I got my money out to pay, Gray tried to grab at someone else’s to-go box and he pinched the cashier. I began my usual flustered apologies, but both people quickly smiled and said I should not worry. As I had wished, Hope’s presence explained it all for me. A kid tethered to a dog in a barbecue restaurant is automatically given some slack and a mother of a kid tethered to a dog is given some sympathy.
By the time we got our food and settled into a booth, the line was starting to get long. As Gray calmly ate his ham and french fries, I kept glancing around at the other customer who were filling the tables around us. No one looked at us. We were just a mom and son having lunch together. Unbelievable. Lunch went so well that we finished our whole meal without needing to exercise the to-go box option. It felt amazing to sit there for 45 minutes and just have lunch together.
After we finished and got up to go, I saw many diners surprised when a dog exited from beneath our table. No one knew we were different. Of course, on the way out, Gray swiped a french fry off of someone’s plate. Laughter all around. No animosity. I didn’t even feel embarrassed.
As we got into our car, I kept telling Gray what a good boy he was. I thanked him for being a good lunch date. He looked proud. Score for Team Golden!
So, I think we can all agree at this point that the service dog idea was a good one. Gray is definitely more compliant with Hope on his side. Transitions happen quicker at school. Restaurant meals are possible. Park outings are smooth.
Also, Gray does seem to be getting some sensory comfort from stroking her fur or sliding his hand under her pack when he is sitting next to her in the car.
The thing that is interesting to me is that, in spite of how well Gray is taking to this new situation, he really doesn’t notice Hope. To him, it just seems like another behavioral limitation has been put in place. Granted, he has responded more quickly to this than other limitations, but that’s it. He seems to have no awareness that there is A DOG STRAPPED TO HIM! You would think that he would show some acknowledgement that this is cool dog is by his side all the time. I know that other kids in this program develop a bond with their dog. They seek comfort in their dog and even learn to verbalize the dog’s name.
Barry thinks that it’s too early for me to expect any bonding from Gray. I guess he is right. Gray certainly bonds to his teachers and therapists and babysitters, but they are demanding attention from him. Hope does not demand anything except proximity. I will be interested to see how this relationship develops.
So here is the part that I would guess people are most interested in reading about: how are Hope and Gray getting along now that the training period is officially over?
Kati’s departure means Gray started going to school with Hope and neither Kati or I were there to buffer the interactions. I felt very nervous about how the first day would go with Gray and Hope “on their own.” Of course, Gray’s teacher is very bright and felt good about the training she received, but still, she has a class to teach and goals of her own to accomplish. It was time for Hope to finally do the job that she has trained for the last 2 years.
I was relieved around 11:30am when I received a text from Gray’s teacher letting me know that she and Hope had bonded on the playground and she felt sure that Hope had averted a tantrum. When she called me later to explain, the story made my heart swell. Gray, Hope and Gray’s teacher (Kendra) were out on the playground. Gray climbed up a jungle gym with a slide. First, Kendra said that Hope stood on her hind legs and pushed Gray in the bottom with her nose as he climbed the ladder. Then, Kendra and Hope waited for to come back down. Kendra was surprised when she saw Gray go down the other side and start running away. She grabbed Hope’s leash and the two of them took off for Gray. Kendra said that she felt very much like she and Hope were a team on a mission. As soon as they got in arm’s reach of Gray, Kendra snapped the tether on his belt. This got him upset and he sat down while making that whine-scream that usually indicates a tantrum is coming. Kendra said that Hope went over to Gray and started sniffing him all over. This prompted some wiggling and laughter from Gray. Then, she put her head in his lap. Kendra said that Gray just blinked and looked at her as if to say, “What was I mad about again?” Tantrum averted. Everyone returned to the classroom in a nice orderly fashion.
This would be a shining example of what I prayed Hope could do. I just didn’t think it would happen so quickly.
Kati left yesterday among many tears. We have all grown to think of her as family and very much enjoyed having her with us. For me, I have spent the last 3 weeks of my life seeing or communicating with her daily. I guess I feel a little like a kid leaving sleep away camp who misses her new friend.
When Kati left, her final assignment to me was to get out and do as many outings with Gray and Hope as I could. She encouraged me to return to places where we have had success and gently stretch to try new situations as we became more comfortable with our success. This was an easy assignment. I am not a homebody and neither are my children. Over the last couple of years, I have had to leave Gray at home more and more often when I wanted to go somewhere with the girls. I have never felt good about this. Even though Gray may not appear to be interested in many activities that we attend, I think it is good for him to be out with our family and exposed to the world. Now, with Hope, that seems more manageable.
This past weekend, we tried to take advantage of our new freedom and the beautiful weather. In a nutshell we: had lunch at the mall, played in the park (same park where Gray once ran into the street), sat together in a bakery eating cookies, went out for pizza and visited the new downtown park. It was monumental. Normal family weekend stuff…previously unavailable to us.
I won’t say that it all went perfectly. There was about 15 minutes of screaming in the pizza restaurant that made me want to climb under the table and hide with Hope. Gray is still autistic, after all. But, there were some small miracles. The noteworthy one was the trip to the downtown park.
The Clyde Warren park is a newly-constructed urban park that spans over a highway in downtown. It’s super-cool. On a beautiful day, it’s also super-crowded. Let me paint the scene pre-Hope. We would parallel park on the very busy street and I would grip Gray’s hand like a vice to ensure that we crossed the street without him darting off into traffic or making a quick reversal towards the car while everyone else moved forward. After we got to the other side, I would continue to grip his hand as we moved to the fenced area at the kids section. I would scan the area to check for any possible escape routes: one entrance, one exit, fences high enough to keep him from scaling them, possible alternative routes so that I could cut him off if he got away from me. No requests from the girls to check out the rest of the park could be honored. Once inside the kids area, I could let go of him, but one grown-up would have to be assigned the job of keeping him in direct supervision at all times.
Here is what was different this weekend: We parallel parked on the street and everyone took their time unloading from the car. Upon exiting the car, Gray was clipped into his tether and took the handle on Hope’s pack. We then waited for the walk signal and calmly walked across the street. No one was frantic and no one needed to hold hands. When we got to the park, we strolled around a bit before we hit the kids’ area. After pushing Gray on the merry-go-round for a while, the girls wanted to get a snack and so did Gray (indicated on his iPad). I clipped Gray back into his tether and we all walked over to the food carts. I got cupcakes for the girls and we went to a different food truck for Gray where he picked out Cheetos and a Sprite. He waited calmly in line until it was our turn to pay. Then, we all walked over to an empty patch of grass and sat down to eat snacks picnic-style. Pre-Hope, I would have sat next to him with a leg over his lap or I would put him in my lap to make sure that he didn’t jump up and bolt off in some random direction. This time, he sat opposite me. Calmly. He ate his Cheetos and drank his Sprite without anyone touching him. He did not try to get up and if he had, his tether and Hope’s body would have stalled him out giving us an opportunity to communicate via the iPad. I think this made everyone calmer and happier. I think that he sensed that I felt relaxed and he followed suit. I know the girls were happier. We all just sat and enjoyed the beautiful day. I know it felt beautiful to me.