our family's adventures with autism and eosinophilic esophagitis
Friday, March 23, 2012
Today is the 2 year anniversary of Lu's diagnosis of Autism and MR. Autism is hard enough on it's own but I find myself writing the initials MR because it is even harder to write the words those initials stand for. I guess it's just part of my cultural conditioning to not want to associate words that are tossed around as casual insults with my sweet and precious daughter, but there they are, right there in black and white on her diagnosis. Despite the fact that the Department of Mental Retardation has changed its name to the Department of Developmental Disabilities, and in all other references she is referred to as being Developmentally Delayed or some other much softer sounding term, still she has the words Mental Retardation on her diagnosis. Sigh.
Of course all it means is that her mental age is younger than her physical age. Which is true. For the time being. She continues to work hard and progress and she kicks ass in many many ways, but even as she progresses, so do all the other kids her age. It is an extreme up hill battle to not only keep moving forward as they are, but to also make up for time lost during her regression and catch all the way back up. Basically she has to work twice as hard as any typical kid to even hope to get where have gotten to by just sitting still and developing normally. I still have hope that she will someday catch up, at least in some ways, to her age peers. I will never give up hope.
But I have also learned to adjust my expectations. Expectations of motherhood, expectations of what our lives should be and actually are like, expectations of education, therapy, progress, growth, behavior, medicine, pretty much everything. These adjustments allow me to keep gauge on where we actually are and celebrate every little victory that comes our way without needing to bemoan or mourn any of those other realities that belong to many other childhoods, but not this one. I'm getting pretty good at it and compared to some of these much bigger adjustments the most recent adjustment is a relatively small one: It has to do with the dog.
We are doing great with fundraising. Over 80% of the way to our goal. Over and over again I have felt humbled and grateful and so thankful for all of the wonderful people who care so much about our daughter and want to help her and our family get through all of this. It has really been an amazing experience. And it is going to be an amazing experience for Lu to get her dog this summer. However (the adjustment) it seems that it will probably not be Booth after all.
I admit it, when Booth was here working with Lu in our home, I pretty much fell in love with him. Not just with him, but also with the idea of him. I saw him as standing sentinel over our baby girl, protecting her, guarding her, keeping her safe. In my mind it wasn't just any dog that we were working towards getting for her, it was this one very particular dog that I wanted. And that's exactly what it was. It was what I wanted.
On our last trip to Phoenix Lu met a couple more dogs. And did really well with them. The dogs that she responded to best were not German Shepherds. They were not big. They were not imposing. They would instantly not strike fear into the hearts of evil-doers. They were some of the smaller, very sweet and friendly looking golden retrievers. One in particular, Gunner, she responded to in ways that we have never seen her respond to anyone or anything. The evening that he came to the hotel room was one of the first times that she did not get at all upset by the arrival of the trainers with the dog.
Usually she had to warm up for awhile before feeling comfortable enough to climb down off of my lap or the sofa next to me or out from under the covers of the bed to go and play with the dog on her own. But this night she asked for her shoes on and then went right out for a walk, held on to the leash the entire time, and even repeated 'stop' and 'look for cars' when Stew said it to her when they were about to step off of a sidewalk into a parking lot.
When they came back from the walk Lu climbed into bed and Gunner climbed in with her. She smiled and giggled as he positioned himself next to her in the bed. They cuddled for a bit and then Lu got up and went around the room collecting every toy she brought with her from home.
As she picked up each toy she carried it over to the bed and presented it to Gunner like she was giving them to him, or at least inviting him to play. She was sharing. Really sharing, purposefully and with intent. She even watched him closely after each gift, as if expecting some kind of response from him, something she rarely if ever does with people.
Then she picked up one of her own discarded socks from the floor and put it onto Gunner's foot. I held my breath. I couldn't believe it. She just put a sock on the dog's foot!
Then she picked up the other sock and put it on her own foot. This probably doesn't sound like a very big deal to anyone else in the world, but I cannot tell you how long and hard we have worked to try to teach Lu to put her own socks on. Teaching her to hold both sides, stretch them out enough to fit over all the toes, aim the foot for the opening without losing balance and toppling over from sitting, then to not leave one toe sticking out on either side and pull the whole sock up. We have worked on and off for nearly two years trying to get her to put her own socks on, and this was the very first time in her life that she had ever done it. And she did it all by herself with no help and no prompting.
The next thing she did was pick up her sippy cup and offer Gunner a drink of her water. Again, this doesn't sound like much, but the idea that she might think the dog was thirsty and wanted to give him a drink, this level of consideration for another living thing, was also a first. It completely blew our minds. I think I was in tears at this point in the visit.
The trainers and I talked some about my attachment to the idea of Booth being Lu's dog and one of them astutely told me that they thought that I bonded more with Booth than Lu did and that Lu bonded much more with Gunner than she had with any of the other dogs. Part of me wanted to say that she had gotten used to the routine of meeting dogs and interacting with them by now and maybe if she met Booth again she would do as well with him, but at the same time part of me wanted to acknowledge this amazing preference that Lu showed towards Gunner. After all, this is going to be HER dog. Not my dog. Not a family dog. Not even a guard dog. This is her Autism Service Dog and if a golden retriever can make more of a connection with her and bring out better behaviors and results from her, then who am I to stand in the way and insist that she have the dog I want because I want it?
The trainers brought up a couple of other reasons to go with one of the smaller goldens or labs instead of one of the enormous shepherds: 1. they are now so enormous that they could easily stand on their back legs and put their front paws on Stew's shoulders, which means that they are large enough to accidentally hurt a tiny little thing like Tallulah without ever meaning to. We talked some about the need for larger dogs for larger boys who might be rough and require a dog big enough to be able to handle them without getting hurt. And 2. the trainers have decided to wait until this first littler of shepherds are 2 years old instead of placing them at 18 months which would mean waiting until Feb of 2013 for one of them to get placed with Lu. All the time realizing there is a possibility that Booth might not pass all of his medical exams for placement, or they might decide that they shepherds are better suited as mobility dogs for adults instead of autism dogs for kids.
If we go with one of the goldens or labs who are already ready to go we could all do boot camp this summer and Lu could start Kindergarden at her new elementary school and have the dog with her from day one. Stew and I have both decided that this would probably be the best thing for Lu. That way there would not be an adjustment part way through the school year where the dog would be this new and novel thing. If she starts school with him then she will always be the girl with the dog and it won't seem strange later on.
I want to take a moment to once again thank everyone who has helped us raise the funds for the dog. It has been such an amazing outpouring of love and support. And I realize that some of you who have helped us might be as attached to the idea of getting Booth as I have been so I wanted to give you all the explanation for why we may go with another dog in the end. We all have to do what is going to be best for Lu. Thank you all for helping us do that. We love you!