This week I attended a fundraising meeting for ASDA via Skype. The camera that gave me a view of the room was mounted up high and gave me a bird’s eye view of the other attendees. As everyone shared their ideas and took on tasks that would move us towards the goal of raising money, it struck me that I was looking down on a room of selfless people. Over half of the people on this fundraising committee are volunteers and the paid employees of ASDA do not have fundraising in their job descriptions. Everyone was there because we share the knowledge that the service dogs provided by ASDA are life changing and should be shared with many more families than are currently possible.
That got me thinking about all of the people that have entered our lives as a result of Gray’s autism. There have been countless therapists and therapy students and babysitters and volunteers that have shown us that the world is fundamentally good and filled with people that have a bottomless generosity of spirit.
I’m thinking about Lauren, our first speech therapy student who answered my ad for extra help back when Gray was just 2-years-old. Lauren spent hours at my house working with Gray and brainstorming ideas to help him while weaving her way into our family. She would work with Gray whether he was in good spirits or bad. She didn’t run away when he drooled all over her or sneezed in her face or screamed for hours. She stuck with us and provided me with comfort and support. And, after she graduated, her sister Haley filled in to join our family as seamlessly as Lauren had.
I’m thinking about our ABA therapists Tammy, Lorin, Lindsay, Jenny, Tatiana, Katy, and Niche. These ladies have been screamed at and pinched and wrestled with our screaming’ demon without complaint. I remember one evening a couple of years ago when Barry came home from work to find Lindsay at the table trying to get Gray to sit in his seat to eat his dinner. He was screaming and flailing and sliding out of the chair and she just calmly picked him up and placed him back in front of his dinner plate. Barry found me in the back of the house and said, “Whatever she is getting paid, it is clearly not enough.” True. But, I have learned that these ladies, like all of the people who have joined our lives, are not looking to just make a paycheck. These ladies are deeply committed to helping my son because they see his potential and they feel a connection to him and our family.
I’m thinking about our speech therapist, Jenny, who worked with Gray from the time he was 18-months-old and couldn’t swallow liquids or manage toddler foods and stayed with us all through the speech and language delays and into the present day despite the fact that behavior management is not part of her job as an SLP. She and all of the other therapists at Callier (Jamie and Jan) have been a source of information and reassurance for me as I navigate this unfamiliar territory. I’m thinking about the therapists who never gave up on Gray’s ability to operate the iPad for communication (Yvette, Lindsay, Melinda, Melissa and Carla) even when that meant hours of sitting in a bare room so that Gray could not look at anything but the iPad and the choices in front of him to help him understand the power of communication through a device.
I’m thinking about the teachers Susan, Kendra and Jemarcus, who we all know are underpaid, but continue to pour their hearts into spending 40 hours a week with kids like mine to help them achieve their best. The teachers who spend difficult days with our kids and still find the energy to answer all of the questions and concerns for us parents truly deserve a medal.
I’m thinking of the babysitters who could easily find jobs caring for typical kids. These girls do not flinch when I warn them about pooptastrophes and Gray’s tendency to ingest non-food items. They don’t complain when they have to spend an unreal amount of time pushing Gray on a swing or jumping on a trampoline. I’m thinking about our INCREDIBLE nanny, Carolina. The hours that Carolina has spent sitting in therapy sessions to learn the best way to work with Gray, while still providing love to Zoe and Lena and order for our household are truly astounding to me. I’m thinking about the Sunday that she spent training with Kati and Hope so that she would get the best training possible to take Gray out in the community. When I tried to offer her extra pay for that day, she laughed at me and waived the money away. In her mind, Gray’s service dog was just as important to her as it was to anyone else in our family…of course she would come to the training without considering it “overtime.”
And, I’m thinking about all of the incredible people who make ASDA possible. The puppy raisers are all volunteers. They show up for monthly meetings to learn training techniques and they keep these precious animals in their homes for up to a year before releasing them to further their training and get placed with their new families. This is truly selfless work. When we went to Portland for camp this summer, almost the entire staff was made up of volunteers. There were autism specialists and puppy raisers and amateur trainers all there to help our service dogs get a “tune up” while the kids had a fabulous week. Kati and Laurel worked tirelessly to ensure that our kids with autism and our typical kids could share a camp experience that would be unavailable to other families like ours.
I’m sure that I have missed some of the people who should be included in this list. There really are so many people who have come to our aid over the years. The point is that, not one of them had to help us. Any one of them could have chosen a life in retail or restaurant management or some other more pleasant career. But, they didn’t. They chose to help us. For that, I am truly grateful.
Shortly after Lena was born, I went through a psychological rough patch. I decided that I needed to see a professional to help me sort out what was going on. I wasn’t sure if I had post-pardom depression or if the severity of Gray’s condition was just sinking in. I only knew that, as a fundamentally happy person, I was not feeling like myself. I felt frustrated, helpless and irritated with those who were closest to me. I remember telling Barry about my decision to seek counseling and his reaction. “That sounds like a GREAT idea! I’m sure you could really benefit from some objective advice.” So, clearly I wasn’t doing a very good job of keeping my feelings to myself. I made an appointment with a psychologist the next day.
I found my time with that therapist to be very enlightening. One of the things that she explained to me was called the “spiral of grief.” She drew a picture of a tornado-like spiral that was small at the bottom and large at the top. She told me to imagine my worst feelings of despair and frustration and loss and imagine that they were a wall next to the spiral (picture a vertical line to the right of the tornado).
So, the person who is experiencing the grief gets sucked up into the bottom of the spiral where the coil is tight and the revolutions are small. This causes the person to get slammed up into the wall over and over again in a very short time frame. This would be like when someone first gets devastating news. It can be hard to make it through even a day because the grief is so overwhelming and powerful. There may be short moments of normalcy or distraction, but they are quickly overshadowed by thoughts of the terrible situation at hand. Fortunately, as time goes on, we move our way up the spiral and the coil gets looser. It takes longer and longer amounts of time to travel around the spiral before hitting the wall again. We can go days, weeks and months without thinking about the grief. Additionally, the time between encounters with “the wall” is a chance to repair, get stronger and develop some perspective. It gives us time to do productive things that actually improve the situation instead of lamenting what we have lost or never had. That way, the next time the wall is swinging towards us, the impact is less jarring.
I think I have moved pretty far up the spiral at this point. Yes, there are days when I could burst into tears at any moment. But, those days are pretty rare at this point. As time goes on, I grow more and more comfortable with Gray’s autism and the prospects that it brings for our future. In fact, I think less about the future now than I used to. I believe that grief is something that can bog us down when we are unable to imagine our futures given our current situation. I’ve gotten more comfortable with the fact that I cannot control the future. And, I have gotten more comfortable with the fact that everyone’s future likely contains some pain and suffering. It’s inevitable that you and me and all of our children will encounter hardship of some kind. Although we can’t protect anyone from the future, we can insulate everyone. I believe that enjoying our present days and making good memories are the only way to battle grief and climb up out of the spiral.
Yes, Gray has lots of therapy each day after school and on the weekends. I hope that his therapy will help him to function better in the future, but I am not going to wring my hands about what might happen if he doesn’t get better. Instead, I will enjoy the free time that I have while Gray is in therapy and I will celebrate each little gain and prideful smile that he gives me when he learns some new skill there. Yes, I went to incredible lengths to get a service dog and now my son is attached to a canine billboard that announces his disability to the world. But, the improvement that dog has brought to our quality of life every day is worth any discomfort or extra effort that comes along with her. Yes, I have met with a financial advisor to make a plan for Gray’s future assuming he will always need care provided for him. I did not do this because I am giving up on him, I did this because I know that grieving over Gray’s condition and praying for a different outcome does not serve any of us. I did this so that I won’t be afraid of the future…it is secure no matter how Gray’s abilities improve or don’t.
So here is my message to fellow parents in my situation: If you are down in the bottom of the spiral, look up. It may be painful and disorienting as you wade through the endless evaluations and research different therapies and compare your child to other typical ones, but it will get easier over time. If you are closer to the top of the spiral and you find yourself “hitting the wall” because something happened today that reminded you of how impaired your child really is or made you fear for the future, you should know that the trip around the spiral is longer these days and you will bounce back faster than you imagined.
People often send me encouraging clips with video’s of kids and adults who have overcome the challenges presented by autism and now have something incredible to say. They send me stories about famous people with autism who made a mark on the world despite their awkward social skills or speech deficits. I know that these people mean well and are trying to offer me comfort and hope. But, the truth is, I don’t really need comfort or hope. I no longer mourn the loss of the son I thought I might have. Now, I can really enjoy Gray for who he is.
As I have mentioned in previous posts, like Halloween Past and Future, this is probably our most favorite holiday of the year. I guess it would be the epitome of having fun with your kids, right? That must explain why school, therapists and family put so much emphasis on practicing trick-or-treating skills. This year, one of Gray’s therapists had the brilliant idea to visit some of the houses where we would be visiting before the trick-or-treating began. While we all got ready to go, she ran ahead and brought treats that Gray would like. She explained our situation and asked them if they would let Gray finish his trick-or-treat requests on his iPad before they dropped one of our planted treats in his bag. Of course, everyone was happy to help us out.
She returned to the house to find us still getting ready with face paint and dinner. Since Barry and I went all-out this year, I was curious to see how Gray would react to us in full face paint. I suspect that a lot of kids with autism might be unnerved by seeing their parents transform into something scary. Surprisingly, Gray thought it was hilarious. He kept gazing at us and touching our faces. In fact, when the makeup chair was empty, Gray climbed right up and tolerated a little face painting himself.
By the time that the “Big Event” was set to start, I felt completely relaxed and confident that the night would continue to be a big success. Hope patiently allowed us to strap a black cape over her service pack and Gray practiced pushing the button on his iPad that said, “My dog is a vampire.” Like so many other events over the last few months, Gray was able to participate fully in this event and his face reflected nothing but pure pleasure. He walked nicely to the houses, used his iPad like a champ and happily opened his bag for the salty crunchy snacks that people put inside. Between houses, he beamed with pride. I swear, I could hear his little brain saying, “this is the coolest night EVER!”
What else can I say? Fabulous night. Fun for all. One more big event that I can officially move from the “stressful column” to the “highly anticipated column.”