Saturday, October 12, 2013

We Went on a Walk

Whenever we have an upcoming event or fun activity I always debate about when and how to tell Bradley. He still has difficulty understanding the concept of time, so if I tell him too early Bradley is disappointed that we aren't going to the party or event that very minute. If I tell him too late, I miss the opportunity to explain to Bradley where we are going, what we are doing, and who we'll be with. I have found that some planning and discussion of the event helps Bradley feel more comfortable when we arrive at where ever we are going and have a better time during the experience.

About three weeks before the Houston "Walk Now for Autism Speaks" I decided to officially join my friend, Lori's fundraising team, "Amazing Him: Team Erik." Lori invited me to join the team earlier, but the hustle and bustle of the beginning of the school semester had my attention. Once we were team members and fundraisers I was overjoyed with the financial and emotional support friends and family gave. 

I started telling Bradley about the walk about a week before the event date. I told him we'd be "going on a walk for autism with a bunch of people who are special like you" and that he'd make a new friend named Erik. I also explained to Bradley that there would be many people at the walk and that some of them liked the same things he did. Bradley was growing increasingly excited each day that we talked about it, but was most excited to meet his new friend Erik.

The day of the walk finally arrived and the boys and I headed for Reliant Stadium with our Red Rider Wagon in tow. When we arrived I unloaded the wagon and then loaded Max and our bags of supplies and snacks back into the wagon. We found our group and after a short transitional adjustment for Bradley we settled in. Amazing Him: Team Erik was comprised of loving, approachable, and sweet adults and kids who automatically welcomed Bradley upon our arrival. However, Bradley wasn't real sure about what was going on at first and was somewhat negative about changing his shirt and putting on the team shirt that everyone was wearing. 


It is hard for me to understand how Bradley can go from being super excited and talking about this walk for a week, to not wanting to be there and going home instead. This happens so frequently when we do something new. My guess is that Bradley has a specific expectation of what he thinks is going to happen and when reality doesn't equate to that expectation, he panics. While I don't think he means to be rude, Bradley's attitude quickly shifts and he says, "No thanks... I want to go home... I don't want to do this." Needless to say, this is embarrassing for me and then we have to spend several minutes readjusting Bradley's attitude and getting him focused on the current event or task.

Once Bradley was on track to have fun then he and Erik were peas and carrots. Erik was super sweet to Bradley and they played well together.


 

Before we knew it we were about to move forward to the stage for the opening ceremonies. Lori led us in a beautiful group prayer that really resonated with me. In her prayer she thanked God for choosing her and her husband to be Erik's parents. I feel the same way with Bradley. It is an amazing blessing to be Bradley's Mom (and Max's mom too).

Walking up to the starting line we were about 50 yards away and listening to the emcee announce sponsors, donors, leading fundraisers, and special thank yous. Happy and relaxed Bradley and Max soon turned in to impatient, cranky, and frustrated little boys. The announcements lasted at least 20 minutes and the boys only became hotter, sweatier, and increasingly more annoyed. Bradley wanted to start walking, but we were surrounded by hundreds of people with very little wiggle room. Max was miserable. He was hot, didn't want to sit in the wagon, didn't want to be held, and didn't want to be told what to do. Bradley kept urging us to walk, "Come on Mom. Let's go. Move. Let's go." But it wasn't time to go and no matter how patiently I explained this to Bradley he just didn't understand.

After what felt like an eternity of waiting, the official start began and we were all excited. However, we weren't really moving. We literally inched our way up to the start line a mere one step at a time. The starting archway was narrow and the crowd was wide. It was wonderful to have such an amazing turnout for the event, but getting everyone through the narrow arch was a headache. At this point Max was screaming, literally screaming in my face. Max was screaming at the top of his lungs. He did NOT want to be held. Max wanted to run around the crowd of hundreds. Sorry Max- not an option. Max screamed in protest. I whispered into Max's ear, "It's okay Max. Mama's here. We're moving now. Look! We're going under some balloons soon." Nope- didn't work. Max continued to scream.

As we inched our way closer I tried to stay positive.I was sweating my face off. Sweet Erik noticed I was sweating and demonstrated how to cool myself off by quickly pulling at the front of my shirt. There was no cooling off for me. It was hot and the stress of Max screaming in my ear, Bradley's impatience, hundreds of people around me, the fear of losing track of one of my kids, people pushing by us, inching our way forward, being cut off by other impatient walkers, and the Texas sun were too much for me to keep my composure. On the verge of tears I began to complain. "Don't these organizers realize that autistic kids have a hard time waiting? What are they thinking? I am absolutely miserable! Uggh! This is not fun." I said these things out loud. Strangers heard and looked at me with pity.

We finally made our way through the inflatable, blue archway and I felt defeated. I felt horrible that I was complaining during this time of empowerment for so many. I continued to fight back tears but felt so alone. How strange... I felt alone in a sea of hundreds of other people. I didn't see anyone else struggling like me. I saw tons of teams helping with the kids. I saw fathers there with their children. My husband was bow hunting for deer. Someone asked where my brother was. He was bow hunting too. I felt alone. I felt incredibly frustrated. I wanted to cry.

We caught up with the rest of our team, but I couldn't stop to wait for the remainder of the team members. Bradley and Max were finally happy that we were moving and I didn't want to stop. We had about 2 miles to walk around the stadium parking lot and my arms were already shaking from caring 30 pound Max and pulling 50 pound Bradley in the wagon uphill. Thankfully several of our team members offered to help me with the boys and I finally accepted help from Lori's brother, Adrian. He is a childhood friend of my brother, so I've known Adrian for 20 years or more. Adrian is young and athletic so I didn't feel too guilty about him pulling Bradley in the wagon. I immediately felt relief. I still regretted my bad attitude earlier and hoped that no one in our team had noticed. Now I was enjoying the walk and enjoying my conversation with Adrian.


Throughout the course my stress went away and my heart filled with joy. Bradley was having a blast! He was smiling at, waving to, and hugging strangers along the course. Volunteers were cheering for Bradley as we passed and complimenting his Angry Birds rain boots. I really enjoyed visiting with Adrian and Lori and I shared our experiences with raising the sons we love on the autism spectrum. We talked about the tough times and the progress our kids have made. Somewhere along the way Max fell asleep in my arms and we moved him to the wagon and Bradley marched along side us.




As we approached the end of the course Bradley recognized that we were almost finished with the walk. He became very excited when he saw the pedestrian bridge we crossed at the beginning of the course. Bradley's excitement turned in to a jog toward the bridge, so I ran after him since Adrian was comfortable pulling sleeping Max in the wagon. The closer we got to the finish line the happier Bradley became. "Look Mom! We're almost there!" Bradley cheered as we walked back through the blue arch, "Hooray! We did it! Hooray!" I was so happy and proud of Bradley's fantastic attitude and joy.



Bradley wanted to play on one of the inflatable slides in the parking lot so after we found Adrian we wheeled sleeping Max toward Bradley's slide of choice and stood in line. Again- autistic kids and lines don't exactly mesh at times. Many of the kids waiting didn't want to wait but their parents stood strong and made them. I was very proud of Bradley's willingness to wait his turn. Bradley's turn was up next and it began to rain. After sweating for over an hour, the cool rain was a welcomed blessing. Kids crawled out of the netted slide and left with their parents. I asked if we could still let Bradley jump and play in the inflatable playground and the volunteers agreed. Bradley jumped and slid and had fun while the rain came down. Surprisingly, Max continued to sleep through the rain.


We could see more rain clouds approaching and hurried back to our team's spot to gather our things. Thanks to the help of Lori and her husband we were able to gather up our many bags very quickly and head toward the car. Adrian helped with the wagon again and we found my vehicle among the sea of cars.

Before the end of the walk I realized that the walk experience was incredibly significant to me because it was so congruent with how my life has been with Bradley's autism spectrum diagnosis. In the beginning (before diagnosis) I was frustrated with the lack of progress Bradley was making in his speech. People were telling me something was wrong but I wasn't handling it well. I felt heavy burdened by this uncertainty. I'm sure I complained quite a bit. I was anxious and scared of losing my child. I lacked confidence in his future... our future. I was rude to diagnosticians and service providers who were merely trying to help. I resisted diagnosis because I feared a label. I envied other families who looked like they had it together. I felt lost.

As we walked through the archway of diagnosis I began to feel some relief, but I was still panicked. We had such a long journey to go and I was already physically and emotionally exhausted. How am I going to do this alone? People are offering to help, but I don't know them. I can't expect them to carry my burden. Gosh this is so hard! Why don't I have the support I need? Well, maybe I do have support. Yes- I do have people wanting to help me. Maybe not who I expected, but they genuinely want to help. Yes! Thank you for your help. (Don't cry). Thank you for your help! You promise to help me through all of this, right? 'Til the end? Please?

Somewhere in the midst of the walk of treatment I am gaining confidence. I can do this. I can be the mom Bradley needs. I can be there for Bradley AND for Max. I can get us through this. I am not alone. There are people here with me and for me. They "get" me. They understand Bradley. They love Bradley. I love Bradley even more. Bradley is happy and Max is relaxed. I have friends who understand. I have friends who understand me even when I don't talk. They love me for who I am and know that my focus HAS to be on Bradley if I'm going to be the mother God desires me to be for Bradley and Max.

As we approach the finish line Bradley is happy. Max is relaxed. My friends and supporters are behind me. My burdens are distant. My God is providing me with the love, peace, and relief that I need. Bradley is overjoyed and smiling. Bradley eagerly runs toward our future with his hand in mine. I love Bradley even more.

For the rest of that day Bradley told everyone, and I mean EVERYONE, we met that he "went on a walk today." He shared his experience with strangers at Chick-Fil-A, police officers we met, and our family members later that day and weekend. Bradley loved our walk and asked if we could come back again. I promised Bradley we would and I can't wait to keep that promise next year and walk with Max and Bradley again.