- ...feeling exhausted because both of us worked full-time careers in the Navy and Pamela only slept four hours a night!
- ...the horrible diapers, especially when the leaked because her digestive system was in such an awful state—you do not want a description.
- ...the awful stares and glares shot our way when our perfectly normal looking daughter pitched a fit when her senses overloaded.
- ...the limited range of convenience foods and snacks for someone on a gluten-/casein-free diet.
- ...having to guess what Pamela was experiencing because she lacked the language to tell us and had no idea we needed to know.
- ...always taking the stairs for ten years, including walking to the thirteen floor of an apartment building while on vacation.
My folks gave me some pictures taken almost nine years ago. This was before we figured out how to fill in missing developmental gaps through Relationship Development Intervention. This was before we had fleshed out fully what Pamela needed for her aphasia (the association method).
What struck me about these pictures was Pamela's complete lack of ability to pose for a simple picture. Right around this time, we renewed passports for the kids. The photographer had to take at least ten pictures to get one with her eyes open. Even though we begged and pleaded for her to keep her eyes open, Pamela shut them the moment she heard the click of the camera. We ended up having to use the picture we nicknamed "the angry drunk" because she was screeching "Say cheese!" She looked quite belligerent in the shot! The four sets of pictures below illustrate how hard I had to work to get Pamela to look into the camera. She is either looking the wrong way while I frantically point or she is grimacing her face in anger.
When my folks gave me these old pictures, they remarked at how much progress Pamela has made. They would know! She spends several hours at their home, twice a week. My dad stated that she seems to be accelerating, especially in comparison to before. Most people expect adults with autism to slow down their rate of development. We are told once a developmental door closes that is slammed shut for good. I am starting to see that as myth based upon how far Pamela has come since these pictures were taken.
The other day, I snapped three pictures of Pamela during our weekly nature walk. I did not have to point or go out of my way to get her to stop and pose. Her ability to share joint attention has come a long way. While taking this photograph, we were talking about the little flower, the Carolina jessamine that blooms this time of year. You can see how relaxed and at ease she is in front of the camera.
Here are two more pictures that illustrate the difference nine years can make! You can see how Pamela is "with" me!
I have one more example of how well Pamela is progressing. When she visits my folks, she gets her programmed television fix for we have none at our house. Lately, they have asked her to go upstairs (especially when Downton Abbey conflicts with sports). Pamela does not enjoy watching that television for it only has nine channels. She would fuss and argue when asked to go upstairs. Finally, I had to tell her that she would have to come to church with me on those nights if she kept giving my parents a hard time. I talked to her about it a week ago, and her attitude has improved.
On the way to watercolor class, we tried listening to a CD in the car. It did not work. Pamela became unglued. I warned her that I could not have her freaking out at art class—we listen to classical music there and sometimes the CD player fails. I tried various strategies to help her calm down, but she was till having outbursts. Finally, I tersely and firmly told her we were going home because she had broken her promise to calm down.
I let her know that I was upset at her, too. Pamela apologized, but I knew she could do more to repair the situation. So, I grew silent and ignored her. I waited and waited, letting her dwell on the long awkward pause. I decided that, if she made a more elaborate attempt to repair the breakdown, I would change my mind and take her to class. I did not share what I was thinking.
We passed the art gallery, and I turned and drove around the block. When she realized that I was taking her home, Pamela asked, "Where are we going?" I remained silent. She must have reflected about keeping her promise the night before at my parents' house for she said, "I watched TV upstairs." Translation: "Mom, I kept my promise last night. I can do it again." I replied, "That's a good point! Because you kept your promise last night, I will give you another chance."
Even though Pamela "won" the argument and "got her way," she continued to repair the situation. I was still disappointed, so, at watercolor class, she apologized several times, held my hand, and made kissing sounds. She kept looking me in the face to see how I responded. I think she did this three or four times to assess the results of her effort to cheer me up. Clearly, winning a victory did not satisfy her if I continued to be upset.
The CD at class did act up. We were listening to Beethoven's Ninth Symphony. To my utter shock and dismay, the CD stopped just seconds before the soloists came in during the fourth movement—my favorite part—the "Ode to Joy" section. I freaked out—in good fun—more than Pamela did. In fact, she remained absolutely calm.
On "Wise Passivity"–The next element in the attitude of masterly inactivity is good humour–frank, cordial, natural, good humour. This is quite a different thing from overmuch complacency, and a general giving-in to all the children's whims. The one is the outcome of strength, the other of weakness, and children are very quick to see the difference. 'Oh, mother, may we go blackberrying this afternoon, instead of lessons?' The masterly and the abject 'yes' are quite different notes. The first makes the holiday doubly a delight; the second produces a restless desire to gain some other easy victory. ~ Charlotte Mason
Thanks, Tammy. I needed this reminder today, for it has been one of those losing-ground days. Your post has encouraged me that, though we do experience lows, we can also experience progress. "Hope is the thing with feathers . . . "
ReplyDeleteI think that's why I've started to blog again. Being able to look back on the way things used to be is a good reminder about how far or or little we've come. It's a nice way to spotlight what needs changing, what's working and what's not. Thanks for this.
ReplyDeleteWhen trying to get a family photo were everyone looked the same direction and smiled I gave up. Now we take 40 shots and I photoshop together one that looks normal.
ReplyDeleteSonya, I'm so thankful God led me to write what I wrote and led you to stop by for a visit. "Hope is the thing with feathers" indeed! :-)
ReplyDeleteSusan, sometimes spotlighting what is really important changes everything.
One happy mom, you are much more patient than I. Normal is a setting on the dryer. LOL
i love you. and pamela. and your story. it is SO beautiful, full of grace.
ReplyDeletethanks for sharing!!
:)