When Aaron returns from his day group at the end of his day, he almost always comes in the garage door. One day last week I happened to be in the living room and saw him running toward the front door as soon as he got out of the van. Oh, he’s probably just in a mood to ring the doorbell multiple times, I thought. So I opened the door before he had time to push the buzzer and when Aaron saw me he breathlessly said, “Mom, there’s a bird on the porch!” Stepping outside, I looked around and saw the poor bird behind the bench, huddled against the side of the house. All the commotion and noise scared him, so he lifted himself up and began to hop away. That’s when I saw that he had some sort of neck injury. It was pitiful to watch him because he couldn’t lift his head. His injury caused his head to hang and just dangle there as he hopped off the side of the porch. Aaron wanted to rescue him but I knew that we couldn’t save this bird’s life. I sadly watched him settle down behind our bushes and then went on in the house to explain to Aaron why we needed to leave the bird alone.
Later, after Gary and I had eaten supper, I quietly led Gary outside to the bushes and the bird. We didn’t want our Great Dane to find the bird, and didn’t want Aaron to see him again. There he was, huddled down in the same position as when I had left him earlier. We didn’t want to disturb him as we stood there looking at his beautiful coloring. Finally the bird heard us and once again tried to move away. It was really heartbreaking to see how his head hung down limply. We felt so helpless. Gary noted his coloring and that night was able to find out on the internet that our bird was a certain species of woodpecker. We didn’t want to think about the bird left out there all night and what might happen to him. Seeing nature up close at times like this is pretty distressing.
As soon as it was light enough the next morning I slipped outside and stood on the porch. Sure enough, our woodpecker was still there but he was dead. We weren’t surprised, really, and it was actually a relief to know that he hadn’t been grabbed and tortured by a predator. Yet we wished that somehow we could have helped him.
As I thought about this experience with the dying bird I was reminded of Matthew 10:29 where Jesus said, “Are not two sparrows sold for a cent? And yet not one of them will fall to the ground apart from your Father.” The Moore family weren’t the only ones who knew about the unfortunate death of this anonymous bird. Our Heavenly Father also knew and even beyond the knowing, He cared. To think that our Father in Heaven, God of the universe, would care about our dead woodpecker was a beautiful picture to me of an even greater truth. God carries that care over to me, in an even greater measure than the bird. Continuing on in Matthew 10:30-31, Jesus said, “But the very hairs of your head are all numbered. So do not fear; you are more valuable than many sparrows.” My God cares for me, even numbering the hairs on my head! He cares about my hurts; He cares about my disappointments; He cares about my pain; He cares about my worries; He cares about my children; He cares about my loneliness. And in I Peter 5:7, Peter reminded the believers to “cast all your care on Him, because He cares for you.” God WANTS me to throw my cares on Him – to let Him handle my anxieties – because He CARES! No matter how insignificant I feel or how scared I feel or how pushed aside I feel or anything else – I am told to throw that care to Jesus and He will care for it because He cares for me. What a promise! What a God! And what a lesson I was reminded of from our little dying bird.
For quite a long time, whenever Aaron would get a new movie, he would put it in a certain place among his rows of DVDs. Then he would go back to the first movie and start watching all of his movies over again until he got to the new one. If he received another new movie, the process would start all over again. Honestly, this procedure of his wore me out but there was no need in trying to change his ways. It didn’t hurt anything or bother anyone. Again, it would be many months before he watched most of his new movies – just like reading his new books. Now he doesn’t have that much structure about his new movies. There are some that take a long time for him to watch but I think he finally realized that it would take a couple years to watch the new ones if he kept doing this.
Also, he doesn’t grasp the give and take of normal conversations like you and I do. He likes some of that, and enjoys some plots of movies. But he really likes the action movies or the ones with huge genetically altered spiders, or rats, or bats……….you get the idea. He just finished a movie about a gigantic shark and octopus. He was so excited to show me the scene where the shark bites the Golden Gate Bridge in half. “Mom, isn’t that cool?!” Uh, yeah, Aaron. And no, don’t ask me to watch that movie with you. I’ve had enough of that for awhile, believe me!
His group goes to the movies every Friday. One day, right after The Bucket List came out, he came home and was talking to me about his day. I asked him what movie they went to see and he replied, “I don’t know. Something about a bucket.” That was the extent of what he got out of that movie! But on and on he’ll go about the enormous, ice age, prehistoric, first frozen and now thawed out, huger than huge, meaner than mean……………shark. Really? Go figure.
In telling you about how Aaron watches movie credits, I decided to tell you about his book reading ritual. Aaron doesn’t read books with a plot or a story-line……………at least he hasn’t read those in years. Social interaction is very hard for him and so books with human lives and conversations bore him. Instead, he enjoys books of facts, such as these Handy Answer Books. He has quite a few of these books and I continue to look for new ones that he doesn’t have yet.
When he receives a new book in a series, he will do one of two things. He will sometimes go back to the very first book in the series and read the books all over again, saving the new one until last. Or he will put the new book on the bottom of the stack of that series, even if it’s not numbered in any particular order, and continue reading from where he is at the time he got the book until he reaches the new one. Either way, he usually has new books for many months before he reads them. Actually, sometimes it’s a year or longer before he reads the new book. One reason for that is because he will only read at night before bed. Again, the ritual and the routine of his life. Gary and I have tried to get him to read during the day but he will NOT.
One morning he told me, “Mom, the book I’m reading now is strange.” So I asked him what was strange about it and he told me, “Well, all it says right now is http.www. and then some other things.” Then I had him show me and I saw that he was reading the very back of the book, under the “Further Reading” section. I questioned him the other night and found that he’s still reading that section of his books – but not the index, he said. To Aaron, this is part of the book as much as the credits are part of a movie – and so he will read every word.
No wonder his reading at night makes him sleepy!
I walked upstairs to get ready for bed last night and found Aaron in his room, propped up on his bed, and watching a movie on his portable DVD player. His gaze was fixed intently on the screen and he didn’t look at me when I stepped into his room to tell him that I was going to bed. In fact, without looking at me he held his right hand up and gave me the peace sign – his way of telling me that he hears me but is focused and wants me to be quiet.
I did a few things and then went back into his room to give him a goodnight hug, which he wants every night. He was still focused on that screen and so I walked around the bed, expecting to see that the movie was at a very pivotal point. As I glanced down at the screen, I saw that Aaron was intently watching…………….the credits! Yes – THE. CREDITS!!! We know that he does this but when I see him actually watching with such concentration something that most of us disregard – well, it just makes me laugh. He totally doesn’t understand why I think it’s funny. For crying out loud, Mom, the credits are part of the movie! And when Aaron watches a movie, he watches the WHOLE movie – down to the tiny, miniscule print at the very, very end. I’ve actually seen him pause the credits to go do something, and then when he returns he rewinds to the beginning of the credits so that he can watch them again from the beginning. So amazing!
I just wish he was that thorough when he showers or brushes his teeth.
Aaron’s word pictures and descriptions of things that he sees and hears are interesting, funny, compelling, etc. For instance, lots of our lakes and ponds have algae growing on them right now because of the heat and lack of rain. Today he exclaimed, “Mom, we passed by a lake and there was mud growing on it!”
I tell you, Kansas can grow anything!!
Every year at this time we have 2 annual meetings with Aaron’s case manager and others involved in his day services. We have to go over all his info to see if things have changed, if he’s happy where he is, etc. We are very appreciative of the awesome professionals that we have around us that manage Aaron’s care. They really seem to be genuinely interested in what’s best for him, not in what the state may suggest or want. We’ve been very blessed and so far things have worked out beautifully for Aaron.
We met for lunch at Applebees today to go over Aaron’s Person Centered Support Plan. I met a new assistant from Paradigm, Barb, and she was so kind. I asked her how Paradigm manages to get such awesome, caring staff and she told me that it starts at the top. The woman who manages Paradigm is very loving and empathetic, and makes sure that she staff she hires is the same. What a difference it makes! And Aaron’s case manager, Carissa, is also very caring. She doesn’t want to push state directives on us but makes sure that she can do whatever possible to keep us in the good situation that we’re in now.
Aaron asked over and over if he was going to have to leave Paradigm. That’s his biggest fear. He’s even had dreams about that! Poor guy! It must be hard to have others making decisions about your life and wonder if you’ll be made to leave the place that you love. We kept assuring him that he was staying there but he kept asking anyway.
He surprised me and got chicken strips instead of the super, duper biggest bacon cheeseburger that he could find – like he usually does. But first he had to make sure that the chicken was boneless, and that he could have onion rings instead of fries. Being assured of a yes to both of those questions, he happily ordered. The cook forgot to make the onion rings so Aaron got the original fries that came with the chicken, and then a few minutes later got the onion rings as well. Wow!! He ate them both, of course, and even wanted to finish my salad when I was slow in eating it. He actually slid my plate over in front of him when I wasn’t looking! And I slid it right back where it belonged!
While we finished our meeting, signing forms and discussing issues, Aaron was becoming antsy and anxious to leave. He was reading the menus and advertisements on the table, and then excitedly said, “Mom, they have Women Tacos!! What are Women Tacos?!” What? Women Tacos?! So I asked him to show me and he pointed to the menu. WONTON Tacos! So glad we cleared that up!!
Helping Aaron change his sheets today reminded me once again of another characteristic of Aspergers – an insistence on sameness. Aaron wants every wrinkle pulled out of his covers when we’re putting them on his bed, and there is one smaller blanket that must be centered. Not only that, but he likes several blankets, in addition to his sheet, and they must be put on his bed in a particular order.
I remember once, several years ago, that as I helped him change his sheets I decided that there was a better order for the blankets to be put on the bed. My order made it easier to tuck the sheet and blankets under the mattress. So I matter-of-factly showed him my plan as I changed up his plan for the Order of the Covers. He said he didn’t like it. So very patiently I showed him again that my Order of the Covers was a good Order of the Covers. The same covers were included as always but in a different order. Aaron stood there pondering and the only word that he heard, as I would soon discover, was the word “different.” Not the word “better” or the word “good,” but only the word “different” – which is not a favorite word of Aaron’s. He complied with my plan at that time, and so we completed the bedmaking with the new Order of the Covers. I trotted happily on my way without giving that exchange a further thought.
Until the next morning. Aaron usually makes his bed before leaving the house, but something that next morning didn’t seem right about his bed and so I took a look. AH HAH!! After we had gone to bed the night before, Aaron got up and changed the Order of the Covers back to HIS Order of the Covers. “Well, well, well,” I thought. Two can play this game! And I changed the Order of the Covers back to MY Order of the Covers. HaHa! That’ll show him! Neither of us said a word that night before bed, but don’t you know that when I got up the next morning he had changed the Order of the Covers back to HIS Order of the Covers again?! We went back and forth then for several days in our silent battle over the Order of the Covers. Finally, though, I faced reality. Did I really want to spend the rest of my life remaking his bed every morning? Was this issue really worth that? Nah, I didn’t think it was.
I conceded. He won the Battle of the Order of the Covers. Good grief, I may as well admit it. He won the whole war!