Today, I went to Gray’s school for the morning to observe the systems that Kati has worked out with the teachers and therapists there. Of course, they are still new at this and they didn’t get the benefit of a week in Portland, but I am concerned. Now I don’t just have to worry about me or Barry undoing Hope’s training, I have to give over control to Gray’s days at school and the people who care for him there. I pray that they will be able to keep up the things they have learned. I pray that they won’t get overwhelmed with all of the straps and logistics of where to place Hope throughout Gray’s school day.
Tonight, Kati gave us an overview of the notes she has been taking throughout the week. She has her list of areas that we need to watch for signs of trouble:
-The large number of people who work with Gray makes it easy for inconsistencies to develop. Hope might get overwhelmed with so many different people giving her commands.
-Lena and Zoe need to be monitored in their interactions with Hope. Zoe is getting better, but she wants to give a lot of commands. Lena is really pushing her boundaries and is reluctant to give Hope a break when she comes home from school.
-Gray’s aggression when he has tantrums could easily become directed at Hope. This might make her start to shy away from him. Although it is part of ASDA’s training program to give the dogs treats and praise so that they don’t see tantrums as a scary thing, it is important that we watch them together and don’t put Hope in harm’s way. But, there is a fine line we must walk so that Hope and Gray have some space to figure each other out.
After watching Hope at school today, I can see how we need to protect her from burning out. There are so many areas where Gray can use her help. Pretty much every transition between activities is a challenge for him. Between physically directing him and heading off tantrums, I’m concerned that she might grow to hate him. We will have to watch that carefully.
Gray is a tough case. Every time a new clinician comes into his life, I am reminded just how severe his disability really is. It is often painful for me to “re-experience” the discovery of his deficits again and again, but I feel like I must endure this to keep up my search for interventions that will make his (and our family) life better. I see now how this amazing dog will be a game-changer. I think this is going to be worth all the effort.
During the week between Portland and Kati’s arrival, Hope was essentially my service dog. Everywhere I went, she came along. It is important for service dogs to make daily community outings to maintain their skills. Service dogs don’t stay home. I have become comfortable taking her to every possible setting: the grocery store, the gym, yoga, date night, you name it. For the most part, people don’t have a big reaction. Most people see the dog in the pack (vest) and they know it is a working dog. Of course, that doesn’t stop them from asking if they can pet her (no, not when she is working). It’s funny, kids seem to get this better than adults. Kids are ok with the boundaries if you explain them. Adults want to find a way to sneak in a pat or a hand sniff while they have you distracted in conversation.
On Saturday night, we went to dinner with Kati and a couple of friends. Of course, Hope came along. We went to a bar for drinks before dinner and Hope navigated the crowd before curling up underneath the cocktail table where we sat. Things seemed pretty easy until a woman with a very thick Texas accent came up to our table. I had no idea who she was at first. Eventually, I figured out that she was the manager. The conversation went something like this:
Manager: “Hi y’all. I want to tell you that I just love dogs.”
Me: “Well, so do we!”
Manager: “Well, I do. I just love dogs, but you can’t have that dog in here.”
Me: “Oh, no, it’s fine. She is a service dog.”
Manager: “I’m sure you’re right. I absolutely believe you and I love dogs, but she can’t be here in this restaurant.”
Kati: “She is a certified service dog and the Federal and State laws say that she is allowed in any public place.”
(This is when I start groping for the ID tag in the pocket of Hope’s pack. It has the federal law printed on the back.)
Manager: “Well, that’s fine, but the health code says that I can’t have animals in here.”
Me: (As I hand her the card) “Federal law overrides local health codes. Here, you can read the law on this card.”
(She take the card and reads it, saying “uh huh” every 3 seconds.
Manager: “Oh, ok. So she CAN be here?”
Manager: “So, I’m not going to get in trouble? Because I love dogs…probably even more than you do.” (She directed that last comment at Kati, so I think she is probably incorrect there.) “Well, ok. I guess she can stay if y’all promise I won’t get in trouble.
Me: I promise
Manager: Ok. Y’all have a good night.
That’s about the most public resistance I’ve experienced. It was entertaining. Every other place has been welcoming without questions. I actually think that she enhances the enjoyment of everyone around her. Who could be in a foul mood with a big, fuzzy, black dog hanging around? I really think her peaceful demeanor is contagious.
Gray started back to school yesterday with Hope by his side. Kati went with him as she will through Wednesday to train his teachers and therapists there. I really hope that they will see a difference and appreciate the new learning opportunities that Hope will give Gray.
It’s funny…When I was in Portland doing my initial training, I felt consumed with Hope and her needs and my relationship with her. I remember, at one point, Kati asked me a question about Gray’s preferences and I said, “Gray who? I don’t know who that is!” I felt so entrenched in my Rhoni/Hope thoughts in Portland that it made me feel distant and out-of-touch with my family. Now that I am back at home, I find myself only focused on my children and thinking, “Hope who?” I think it is a little like when we had Bella (our pug) for the years before we had children. I loved her and focused on her and swore that she would never take a back seat to babies. Of course, as soon as the babies came along, Bella was a second-class citizen. Only, here, I can’t let that happen with Hope. I must find a way to feel equally protective of her well-being and that of my kids. She is performing a critical job for us and I must repay her with attention to her well-being: both physical and mental. It’s like a fourth child has become part of our home.
My head might explode.
We started out our morning with a family breakfast at one of our favorite restaurants. We used to go there more frequently when Gray could be strapped into a high chair, but after he got too big for that, it became more and more difficult to manage him in a real (non-fast food) restaurant. I am proud to say that it only took 4 adults and a highly trained service dog to accomplish a civilized normal-looking meal with my 3 kids. Seriously, people who have neuro-typical kids or no kids at all should really appreciate the regular things that they can do without it being a big deal. We require an entourage to just go out for breakfast.
After a lovely and successful breakfast, we went to the Arboretum. Barry offered to take on the handler roll while we were there. It was incredible. Gray really enjoyed walking around and looking at everything without being restrained by a stroller or grown-ups tightly gripping his hands. Of course, I was so wrapped up in the details of every possible scenario (was the leash too tight, was the tether pulling on the dog too much, what would we do if he dropped to the ground?) that I missed the big picture. Barry was the first to say how impressed he was at Gray’s ability to just walk with us along the paths. He said several times, “Could you ever imagine him coming here with us without a stroller? This is incredible!”
One thing that was very surprising to me was Gray’s lack of endurance. Gray is a VERY active kid. He is constantly jumping and spinning and throwing things, so I assumed that he had good endurance. I was mistaken. Those activities are all short-burst actions. After walking at the arboretum for about 15-20 minutes, Gray got very tired. He kept trying to sit on Hope or lay across her body or ride her like a horse. When those things didn’t work, he started walking like a little old man – bent at the waist and dragging his feet each step. The interesting thing is that he did not throw a fit or ask to be picked up. He plodded along and was grateful when we stopped to sit on a bench. This was another first. Gray doesn’t sit on benches. Gray rarely sits anywhere for a long period of time. Sitting is a skill that we have worked on quite a bit in his behavioral therapy. The fact that the walking made him tired enough to volitionally sit was very encouraging. It just seemed so “normal.”
Another thing that struck me at the arboretum was Gray’s willingness to walk nicely with us. In the past, Gray would just run randomly in some direction that would send one of us chasing after him. Kati mentioned that there are some people who theorize that people with autism do not understand how to follow a path. Whereas a typical person would see a sidewalk outside or a walkway in a mall, people with autism do not see the distinction between “on the path” and “off the path.” That is an interesting idea that would explain Gray’s tendency to just head off from the group without considering the appropriate places to go. With Hope, he is shown the path. With Hope, he can peacefully take in his environment in an organized “on the path” manner.
It makes me think about my days as a wheelchair specialist. I used to raise eyebrows when I would suggest putting people with brain injuries in power wheelchairs. Many therapists and family members would be worried that a person with cognitive deficits or poor spatial awareness or problems with aggression would be dangerous in a motorized wheelchair. My thought was that, perhaps some of those issues could be corrected simply by letting the person be responsible and capable of moving in their own environment. How can you expect a person to pay attention to his environment if he has always had someone else navigating? How could a person develop spatial awareness if they never felt responsible for consequences that might occur if they were inattentive? Likewise, a reasonable person might turn aggressive if he was never allowed to explore his environment and felt imprisoned by his caretakers.
I am stunned by the similarities with Gray. If every outing we take with him results in him running off and someone chasing after him to drag him back, that is frustrating for everyone involved. Gray is mad because he didn’t get to go where he wanted and the caretaker is mad because her heart is pounding out of her chest. With Hope, Gray must take the time to think about where he wants to go and communicate that in an appropriate way. The journey feels calm and happy. He stays focused on his environment. Learning occurs.
By the time we took our third outing of the day back to the mall, Barry and I could see this was true. We are both very optimistic that big changes are on the horizon for Mr. G.
So here is the plan that Kati laid out for us today: Try to get a few outings in that are really fun and rewarding for Gray so that he can start to build a positive relationship with the tether system and Hope.
Our first trip was out to Burger House, Gray’s favorite burger and fries place. We don’t usually go in here, we just do the drive thru because it is generally very unpleasant for us to take Gray into a restaurant. Because we parked the car instead of pulling into the drive thru lane, Gray go upset. We musn’t change our routines, you know. When he first got out of the car, it was a mess of straps and handles and boy and dog. After we were all standing and ready to go inside, things went better. As soon as Gray realized he was going to get his Burger House fries after all, he was good to go. After a quiet meal sitting in a booth (almost never happens), we were ready to move on to our next location.
We decided to go to the grocery store next. Kati wanted us to make a quick trip where we got an item for me first and then we could get something for Gray. We decided on fruit and then cookies. This trip was a little rough. We had to pull a screaming boy off the floor 3 times in the 20 minutes we spent in the store. I think we all felt a little traumatized after that.
Later in the afternoon, we made two more outings to the mall and an indoor trampoline facility. Both went pretty smoothly. I just can’t believe how much effort goes into making this system work.
What is so interesting to me is other people’s reactions to Gray and the dog. Before, people would just assume that Gray is a normal kid with a discipline or hyperactivity problem. I consistently have to apologize to people in stores because he will be screaming, or knock something off the shelves or pinch a stranger passing by. With the dog, people can see right away that something is up with Gray. I wasn’t sure at first how I felt about that. Now, I think I am grateful for that. If there is anything that a parent of an autistic child needs, it is more compassion from the public. I will take all of the kind gestures that people are willing to give me. Of course, then there are the people who are simply oblivious. Like the woman at the mall who just stopped in her tracks and said, “is that a REAL dog???!” Or the man at the grocery store who paid no attention to my child writhing around on the floor and wanted to ask me the dog’s breed.
I really hope that things start to feel easier soon. Right now, this is so labor intensive, I wonder if we have made our lives easier or harder.
Today was Barry’s first day to train with Hope. Until now, he has watched me with Hope and shown her a great deal of affection, but I could feel his discomfort with the limitations surrounding his abilities to do simple things, like take her on a walk. In our marriage, Barry and I try to be supportive of each other, but we also recognize that there are some areas that get assigned to just one of us. For example, before I left last week, Barry had never once packed a lunch for the kids to take to school. I’m ok with that because I recognize that as my job now that I am a stay at home mom. Likewise, Barry doesn’t burden me with details of his difficult cases or day-to-day work stresses because he knows that I am home meeting the needs of everyone in the house. For the most part, it works for us. We are respectful of each other’s work loads and we try to give each other ample breaks.
Additionally, he is a great dad. He works to bond with the kids each at their own interest level. He plays video games or takes bike rides with Zoe, he plays catch or baseball with Lena, and he takes Gray in a jogging stroller for long runs. The problem is that Barry rarely has the opportunity to be trained by the professionals who work with Gray because the sessions fall during his work day. This results in Barry interacting with Gray to the best of his abilities, but maybe not to the best of Gray’s abilities, because Barry hasn’t witnessed all of Gray’s skills in action.
Having Kati here over the weekend and arranging for Barry to suspend his workload from Friday at noon until Monday morning is a great opportunity for Barry to feel empowered with understanding as well as hands-on experience. I know that, if he can feel comfortable with the handling of the dog, he will embrace this new aspect of our lives.
I guess I was right, because he listened to every word Kati said today. He observed me intently as I demonstrated my new handling skills and he never got frustrated or overwhelmed when the instructions felt confusing or Hope didn’t do what he expected. Watching him work with her in Target and at the park made me swoon. I am so in awe of this wonderful man who would put aside his very demanding job and spend the afternoon learning skills with the dog just to make things easier on me and our family. I am so proud of him.
Gray is warming up to Hope. He isn’t exactly seeking her out yet, but he definitely pays attention to her if she is nearby. Unfortunately, that means that she can be the recipient of some of his less favorable attention. He has taken to bracing himself on her back as he jumps up and down. When he buries his hands in her fur, those caresses can turn to pinching or hair-pulling quickly. Of course, I am staying close to them during these interactions so that I can be quick to stop any pain that he might inflict on her and any retaliation that might happen. I am surprised and pleased to say that Hope has not flinched or shown any distress when Gray acts this way. Also, Gray has been quick to stop the pinching, hitting, or hair pulling as soon as I tell him “no” and “gentle hands.” I think that he knows this behavior is not appropriate. He is just testing his boundaries. For now, I remain optimistic that his interest in Hope can be shaped to more appropriate interactions and the bond will grow from there.
As I continue my week with Hope as “my service dog,” I am still amazed at how easy it is to conduct life with her around. We have been to the grocery store at least 4 times, yoga twice, carpool every day and even a trip to get my eyebrows waxed. Her behavior in-pack is perfect without exception.
Out-of-pack time is proving to be a bit more challenging . When we are at home, she does not wear her pack and she is considered off-duty. She is our pet, but with some rules and restrictions: no rough housing, no crazy play, no barking or running to the door…basically, just calm happy behavior. That is tough with Zoe and Lena constantly wanting to play with her and give her commands. The other night, I dropped to the floor in a tickle-wrestle maneuver with Lena and Gray. As we were all laughing and squirming on the floor, Hope wanted to join in. She was leaping over us and barking and trying to get in on the fun. These are the situations that make me unsure and concerned that I am going to wreck all that she has learned.
I’m glad that Kati will be arriving tomorrow night to help us apply everything to our real life here at home!