RIP, Lovely Loa!

When Amy Cameron at Pathways Treatment Center contacted me about an interview for Pro-Active Development, she asked me to explain how I became such an empowered parent. Her question caused me to grapple with the idea of the "warrior mom", which is not the path I chose. Although I spent my childhood living on one naval base after another and spent fourteen years as an officer in the U. S. Navy, I bristled at the idea of having to fight for services, argue with insurance companies, and debate the doctors. I did not want my relationship with Pamela to be tainted by always having to be at war with something or someone. Without carefully thinking it through, I typically took the path of researching information and quietly applying it to our life as a family. That process made me a mindful mom.

Part of being a mindful mom is to sow seeds that may not be reaped for a long time. Back in 2007, when my brother's dog died, I began to consider how we would handle to death of our beloved pets, in particularly the lovely Loa. While one dog ran off and we had to give away another due to a move, we had never had a pet die on us at that point (except for nameless fish). When our parakeet Lily died in 2008, we chickened out: Steve came home with a new parakeet and then we broke the news. I even mentioned in the blog post how we had spotlighted that moment because we would eventually have to face the death of Loa. At the time, she was still in good health except for hypothyroidism which brought on arthritis more quickly and caused us to restrict her food intake. This girl would balloon if fed according to directions on the dog food bag. Later that year, Loa started developing a horrible skin condition which eventually led us to put her on Limited Ingredient Diets dogfood. We had to make a fifty-minute round trip just to buy her special food, which also happened to be gluten-free, casein-free, but she was worth it.



Elderly Loa had slowed down considerably a year later. While she had always been docile, we never trusted Pamela with her in case a squirrel caught her attention. The dog's movements had become so stiff that even Pamela could walk her. The signs of aging had become more and more clear in the past year. Loa's joints swelled, and she had to hurl her front legs when she walked. Her coat became more gray and sparse around her legs and tail. On Steve's visit early last November, he noticed how much weight she had lost. I tried fattening her up with some coconut oil and increased her daily allotment. Before Thanksgiving, she had a nasty allergic reaction to anti-flea medication. She appeared paralyzed but was too alert for it to have been a stroke. She recovered some of her leg function and could walk very slowly. When the steroids wore off, her back legs went cold and she couldn't hold her own weight.

Off and on in the past year, we have made little comments in front of Pamela about Loa getting old. Every single time, we were met with screeching and loud protests, "Loa's not old! She's YOUNG!!!!!!" We persisted in bringing up the topic calmly to probe her reaction. Oddly, when Pamela saw the decline herself, she made comments like "Loa is floppy." Then, I added something to her comment. "She can't run outside anymore." Pamela watched me prop her up to drink. She saw that Loa kept having accidents. She could not deny that Loa was not only old, but dying. Pamela stopped freaking out when we talked about this painful topic. I think she realized that Loa was not living life to the fullest. She was no longer the dog the kids could use as a pillow for she yelped, even when treated gently.

In that last week, we had to broach the next issue. Having two households, eleven-hundred miles apart, makes pets an inconvenience. We always have to finagle someone into watching the bird and to kennel the dogs. This time we would not buy a replacement pet. At first, Pamela freaked out about that, too. I explained why and my reasoning must have made sense to her. She negotiated and asked for a toy dog instead, and I gladly agreed.

Two weeks ago, we said our good-byes to Loa and I took her to our vet (who, by the way, was absolutely wonderful to us). Pamela remained quite calm and has yet to buy the toy dog. She has been reading the blogpost about Lily to reassure herself (yes, she reads my blog--"Hi, Pamela!"). Steve and I were much more emotional about it than Pamela, and my tears are far more cleansing than Pamela's meltdowns.

And, in God's perfect timing, Loa died on the day of one of our walks in the swamp with its ghostly pines. We just "happened" to be reading poetry by Walt Whitman, who captured the mood of that day so well. We are near the end of a term, which means saying good-bye to a pile of books, and reading of the death of beloved companions like Louis Braille and Alfred the Great. Unbeknownst to us at the time, the morning we let our sweet old dog breathe her last, a lost soul far to the north was heading out to commit an unthinkable act to our nation's youngest and bravest.

And, of course, it was a season rich in carols for the One who was born simply to die...

Then with the knowledge of death
As walking one side of me,
And the thought of death close
Walking the other side of me,
And I in the middle as with companions,
And as holding the hands of companions,
I fled forth to the hiding
Receiving night that talks not,
Down to the shores of the water,
The path by the swamp in the dimness,
To the solemn shadowy cedars
And ghostly pines so still.


And the singer so shy to the rest received me,
The gray-brown bird I know
Received us comrades three,
And he sang the carol of death,
And a verse for him I love.


From deep secluded recesses,
From the fragrant cedars
And the ghostly pines so still,
Came the carol of the bird.


And the charm of the carol rapt me
As I held as if by their hands
My comrades in the night,
And the voice of my spirit
Tallied the song of the bird.


Come lovely and soothing death,
Undulate round the world,
Serenely arriving, arriving,
In the day, in the night, to all, to each,
Sooner or later delicate death.

New Year Reflections

Here is the only math I will put in this post. My next post is another matter. To celebrate the New Year Pamela style, I printed out a dodecahedron calendar from RightStart on cardstock for her to cut out and put together. Pamela loves calendars and she can tell you the day of the week you were born given your birthday and year. A cyber friend emailed me to ask Pamela if when she could "recycle" her 2003 calendar because of the repetition of the fourteen different kinds of calendar. In five seconds, Pamela told me 2014. She loved kicking off the first school day of 2011 making her own calendar.

Cutting out this calendar appeared quite complicated and, at first, Pamela looked overwhelmed. Then, I guided her into breaking down the job into smaller steps:

• I picked up my scissors and snipped off one edge. I handed it back to her and she realized that the job becomes less intimidating when you focus on one corner.
• At first, she focused on edges while I snipped out the corners. Once she was comfortable, she cut both edges and corners too. When she felt stuck, she passed it back to me and until we cut out the entire outline.
• The next phase was cutting the solid lines joining two calendar pages. Pamela caught on right away. She cut and I "cleaned up" any sloppy cutting--her fine motor skills still need sharpening.
• Then we took turns folding along the dashed lines.
• Because glue is just not her thing, I glued and taped the insides until the calendar was finished.

This process reminds me of how we have taught Pamela many things that seemed impossible at first. At first, I feel overwhelmed and then I think about what small things can she do to get the ball rolling like I did with having her work on the outer edges of the calendar first. Sometimes, seeing her do some thing small helps me see that she can do more than I expected. Then, I slowly work in something more difficult (like snipping off the corners). Sometimes, she figures out what to do by watching and imitating my actions. Pamela also knows she can turn to me for help when she is stuck, making her more willing to try something new. When an expectation is beyond her reach, I quietly step in and take care of those things (cleaning up sloppy cutting and gluing and taping) without making her feel incompetent for not being able to yet. YET!

Knowing that today's "yet" is tomorrow's milestone keeps me positive as we slowly plod along.

Speaking of milestones, the other day, we had the most delightful little conversation. To give you some perspective, at 10, Pamela had LOTS of words, mainly nouns and phrases, but could not put them together in a sentence because of her aphasia. We had tried autism programs like Teach Me Language off and on, but they were not effective. By 14, not much had changed in being able to put words together so as to make sense! Then, we found the association method, which is for kids with aphasia and other severe language disorders. By 18, she could speak in very short, limited sentences. That's when we stumbled on RDI, which gave her a newfound ability to communicate without words (reading facial expressions and body language, having the desire to communicate, sharing experiences, etc.). Being able to fall back on nonverbals smooths her path to communication when she is having glitches with her verbalization.

Last year, Pamela turned 21 years old. We continue to work on her nonverbal and verbal communication in context, focused on full meaning, without direct prompting, and without constant corrections. Yes, you read that right--WITHOUT. She can relax and trust me that sharing what she thinks is not going to bring out the drill instructor. If she makes herself clear enough for me to understand, then we continue the flow of conversation. I don't worry if she has a grammar glitch or a wrong word or even an invented word. While she is not having a back and forth exchange of ten perfect sentences, she is up to two or three turns when the moment is right. Here is a recent short conversation:

Me: "Pamela, you were right!" (I intentionally left out information to see what she would do with it. It is a way of encouraging her to communicate without prompting.)

Pamela: "Right about what?" (Don't you love that question? She cared enough to ask!)

Me: "Burger King" (She noticed the Burger King sign coming down the other day; I thought they were fixing it.)

Pamela: "Is it closed?"

Me: "Yes!"

Pamela: "Is it moved?" (Earlier in the year, the McDonald's closed for two weeks while they were moving into a new building.)

Me: "No. Burger King didn't build a new building."

It is never too late to try something new. But, it's important to find things that are small and slow and steady. Sometimes, I think LF children have been bombarded with too much and they shut down and give up. Sometimes, we feel overwhelmed by too many things to do and too many decisions to make. Autism is a very complicated thing, and, sometimes, no matter what parents do, the child struggles. We need very slow, gentle learning situations where we all can process and think before interacting. Speaking without thinking, speaking automatically, speaking without ideas and connections and meaning is just talk. Communication is more than words.

Yesterday Pamela asked one simple question that revealed a sophisticated train of thought three steps ahead of us. Even though she doesn't always participate, she pays attention to our conversations. The black car is in the shop, so Steve borrowed the van at work to get home the day he dropped it off. The van has been sitting here since then. Steve left it at the office today and got a ride to the airport for a business trip. He asked me to pick up him on his return later in the week. He also mentioned that he was picking up the black car before the weekend. While he and Pamela were running errands last night, she asked, "Where am I going on ___day?" Steve had no idea what she meant. Then, she added, "Get the black car." Suddenly, Steve realized that he would need me to go to Charleston with him to pick up the car. Pamela had reasoned all that out in her mind, and clearly a great deal of thought went behind her simple question. While she probably lacks the ability to explain her logic, her question is evidence of her ability to reason.

Last Sunday, we saw evidence of more milestones in the making. Her first experience with death was when her great-grandmother died in 2004. It upset her greatly and we weren't allowed to mention the "d" word. Over the years, she started asking questions. Where is her body? Where is her soul? Does her soul have a mouth? Is her body a skeleton? In 2006, my great aunt died and Pamela wasn't ready to face it. We all drove to North Carolina, and Steve dropped David and I off at the funeral and took Pamela somewhere to kill time. In the past year, Pamela has seemed less fearful and asks questions from time to time.

When we learned of Uncle Jerry's terminal illness, we told Pamela about it. She first said, "It's alright. He'll get better." We told her that wasn't going to happen. His body was too sick. She asked, "Pass away?" We confirmed the truth for her. We visited him a couple of times and she never acted fearful around him and interacted with him like she always did. When we told her he had died on Christmas Day, she said, "He's in heaven with Eugenia. What about the babies?" I had no idea what she meant until she started talking about Baby Alive. Pamela wanted to know if she could bring her three babies to North Carolina. And, she did!

When she first asked about going to the funeral, we left it up to her. Aunt Edna had the body cremated and planned a memorial service on his birthday next September. So, all that Pamela would need to experience was visitation with family, friends, and friends of friends at the funeral home plus a short ceremony with military honors. We hoped she would try because it would be the least intimidating way to approach this. Pamela joined us at the funeral home and spent most of the time sitting in a comfortable arm chair, watching everything.

When the Air Force airmen started the flag folding ceremony, I was on the other end of the room. Since Pamela had been fine up to this point, I figured she would be okay. And, she was. I had forgotten this little thing called a gun salute, which happens before the bugler sounds "Taps." I hate to admit it but I jumped at the first shot. Then, I worried about what Pamela would do? Would she notice? It was so loud. How could she not notice? Would she get upset and freak out? I didn't hear a peep until after the second shot. Then, a calm voice asked, "What are they shooting?"

I quietly moved next to Pamela and explained that they soldiers were honoring Uncle Jerry because he was a soldier too. Her serenity surprised me because clearly she knew those were not fireworks. I think Pamela noticed that everyone in the room was standing still and calm. She didn't panic because nobody else was.

So, Pamela has reached another milestone: saying those cute things that kids say in public that make people chuckle. Okay, so she's about twenty years late. Who cares! A milestone is a milestone!

The other new thing is emphasizing her words by spelling it out. "I said 'Now, N-O-W, Now'!" This evening, Pamela and I were at my parents' house. She was tired and wanted to go home. After we ignored her first two requests, she said, "I want to go. G-O, go!" And, as she was saying the letters g and o, she was signing them with her hands using the manual alphabet!

Pamela definitely made her point!

Rest in Peace, Sweet Lily!

When I pulled off the cover of the bird cage on Friday, I noticed that Lily our sweet parakeet was dead. I knew Pamela would need scaffolding on handling the death of a beloved pet, so I left the towel on the cage all day to avoid attracting her attention. Steve left work early and picked up a new parakeet for us. Pamela decided to take a bath, so I quietly took care of Lily and cleaned out the cage (yes, we gave her a Christian burial and not a royal flush). Steve had just arrived when Pamela noticed that the cage was in pieces, and Lily was nowhere to be seen. I decided to film our conversation in case I needed to learn how to better handle the death of a pet.



Pamela began asking me, "Where's the bird?" I very calmly and quietly eased into the news by telling her about the new bird first. She was mildly upset, but we spared her the kind of uncertainty that drives her over the edge. Because we already had a new bird, I think it lessened her anxiety. She was very interested in assisting Steve in moving the new bird into the cage. Steve had no idea how to do it and did a great job of remaining calm and neutral. I scaffolded Pamela in finding little roles to help him out. We used lots of declaratives and nonverbals and limited our prompts and commands as much as we could as we moved the new bird. Pamela named him Pat. We have no idea why she picked that name!


And, here's Pat . . . (Patrick if you are being formal).

Rest in Peace, Gus

Gus, a dog in our extended family, died yesterday (we think he sneaked some chicken bones). Pamela loves animals and still misses her Aunt Pam's cat Simon who died nearly ten years ago. She has a huge collection of Beanie Babies and loves all the pets in our extended family: Elvira (an elegant white standard poodle), Loa (the laziest sweetest dog on the planet), Arwen (the hyperactive beast), Lexxus (the rambunctious white pit bull), Buddy (a friendly little guy), and Oma and Opa's fish. Gus was a brutish-looking pit bull with the heart of a sweet kitten. All you needed to do to make that dog happy was sit and pet him and throw him a bone. When I broke the news to Pamela, I told her that Gus is now playing with Jack (Laura Ingalls Wilder's dog) and chasing Simon in the happy hunting grounds. This is a picture she drew of Gus on his way to his new home.

Today is the last day in which Pamela will find pieces for the Barbie "fish trap/jail". While building a puzzle, I asked Pamela what she might see in the locked box, and she anticipated correctly (more green fish pieces). I am spotlighting this expectation because tomorrow I will put something different in the locked box (a pink fish). I am interested to see her reaction when she opens the locked box tomorrow. I am hoping she will be surprised, which will be an opportunity to spotlight that emotional reaction.

Something exciting happened when we played Guess Who? today. We play it once or twice a week, and usually David is her helper (making sure she responds correctly to my questions or answers). Today, she played her round all by herself. With a couple of lucky guesses, she narrowed her choice down after only five questions and guessed the person's identity correctly! I had about ten possibilities left by the end of the game. She smoked me fair and square.

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