Yesterday was RJC's 21st birthday. It was a regular day. She went to school. I went to work. The family went to Friendly's. Yet in reality, life is changing - it's just slightly delayed. On June 24th, she will officially "graduate" from school (technically she'll get a Certificate of Completion) and move on to her new adult day program. The one I obsessed over for the last 10 months or so. So, I've been thinking about where we were, where we are, and possibly...where we are going.
Where we were and where we are:
1. Language
It's hard to pinpoint when RJC started to talk. It depends on how one defines "talk" actually. It was close to age 4 or so that words emerged. Does echoing count? She became very good at repeating what was said to her, but comprehending what was said did not come until much later. She could complete a sentence if we were singing and left out a word, but that's not actually communicating a point. She could script from Barney but again, not actually communicating. Communicating in sentences came at some point, but it was a slow process that sort of unfolded. I don't think we even realized it until it was just - there.
Today, she types her daily schedule in my phone. In fact, she has me scheduled for some events in the year 2014. She writes a detailed grocery list before we go shopping. She uses language to communicate and though her syntax is unique she is almost always able to get her point across. She still has challenges with pronouns (that is SO difficult to teach) and cause and effect. She is very concrete, making abstract concepts challenging. When her grandma died it was almost impossible to explain. To this day I'm sure she does not understand what happened but she will sometimes blurt out "Grandma died" which I assume means she is thinking about her and knows that "died" means "not here and will not be back." I am sure she has no idea where grandma is, though, or why she won't come back. Nevertheless, she seems to have come to some acceptance of her own definition of the word. She still scripts but it has meaning. At night we have our ritual. She says the beginning of the Shema (a prayer in Hebrew) and then:
Goodnight Mommy.
Goodnight Rachael.
Goodnight Mommy.
Goodnight Rachael.
Thank you for the two times for Mommy.
You're welcome Rachael.
She loves music and when she has something important to talk about, she sings it. She has her own tune she usually uses, though she has been known to use a more well-known tune. For example, if she wants to remind me that we are going to the mall she may sing "Rachael is going to the mall, to four places, hidee hidee ho." Point taken.
Her language is certainly functional. She uses it to get what she needs but she also uses it simply to make a connection. Her way of using language may not be the way that we use language, but it works. In the end, that's all that matters.
2. Behavior
This is tricky. We have had so many complicated and dangerous behaviors we've dealt with over the years I don't think I could begin to describe this issue in detail - this subject is really its own book. Here's some issues that stand out. When she was very young she would tantrum multiple times a day. Kicking and pinching combined with a high pitched and constant scream. In public and at home. Sometimes we knew why, other times we had absolutely no clue. We had to hand out business cards that explained autism as we left stores and restaurants with a screaming, kicking child, just so people would not call the police. When I was pregnant with our younger daughter the doctor asked if anyone was abusing me at home because I was so black and blue. Then there was a year where she literally would cover her ears anytime we were outdoors. We had a behavior plan in place to get her to keep her hands down. Since we worked on one hand at a time, she resembled Napoleon for a good chunk of that year. We dealt with bolting behavior for many years. This meant that before she went on a field trip I felt the need to scope out the area and draw (pathetic) maps showing areas of possible concern. I lost her once in the mall. We used one of those kid harnesses for many, many years and had to endure stupid comments from strangers who were clueless. Yep - still remember feeling really ticked off by that. We had the year from hell when she was self-injurious and would literally throw herself through our walls. She would bang her head and to this day we still have little "head dents" in our hallway. That year I hardly ever went anywhere other than to work. We went to medication but no relief.
Today, behaviors continue to be challenging though different. We have a better understanding of how to use behavior plans, we know she responds positively to visuals and we have had huge amounts of support from school and our BCBA (Board Certified Behavior Analyst). She has much more language which has decreased her frustration, thus decreasing some of the behaviors. She still needs to have structure and an understanding of what will happen with her daily schedule and prefers to have it written down. Yet if we need to make a change we usually can without too much of a problem. Of course, we have also learned to avoid huge issues. For example, if we are planning a vacation to Disney, we do not tell her until the night before when we cannot push off packing any longer. This way, we know that barring any last minute unforeseeable emergency, the vacation is 99% sure to happen. Cancelling a Disney vacation would NOT go over well. She likes her routines and we have learned to respect that about her without letting it completely rule our lives. It is a very fine balance. Very. I've learned to understand that routine = comfort. Just having that understanding gives me the patience to deal with some of the behaviors that pop up when the routine is interrupted. One of the biggest behavioral challenges continues to be the screaming. We are working on it though, and making progress.
3. Awareness of Others
It used to be that she really did her own thing, preferring to hang solo - looking at herself in a mirror or watching videos. Well, really pieces of videos over and over and over again. She didn't seem to be interested in other people or even notice what was going on around her. There was a situation where her curtains in her room had somehow started to singe and her room filled with smoke. She never moved from her bed. Once we figured out where the smell of smoke was coming from we opened her door and she was just sitting there. The fire department came to our house and she barely looked at the big fire trucks (yep, plural...sigh) in our driveway and in front or our house. In fact, the next day we had a visit from the Fire Marshall asking questions about her because they were concerned that she did not even glance up at a police officer who was trying to talk to her.
Today, she notices everything. Everything. We drive in the car and she points out ambulances, dogs, police officers, restaurants and stores. She knows how to get places and when I miss a turn she bursts out laughing, totally aware that I am lost. She will comment if I get my hair cut ("Mommy, nice hair) or if the phone rings she inevitably asks, "Who's that on the phone, Mommy?" She likes to make calls to a select few people who are very important in her life. She'll take my phone and I won't even know it until I hear her talking. It is completely her initiative.
Where we are going:
I have no idea. This is a journey with no map. We are mostly along for the ride and RJC is driving. I have my dreams for her and though I tend to plan, I've gotten used to having Plan A, Plan B, Plan C, Plan D...and so on. The best plan is not written in stone, but written in sand.
What I've learned over these 21 years is that it is absolutely necessary to be flexible. Change is not necessarily bad. There are lots of ways to get a point across and it's important to listen carefully. RJC is capable of all sorts of amazing things and should not be limited by my own fears. And most important of all - letting go (just a bit) is a good thing. Hardest lesson yet and still working on that one.
21. The start of the future.
Bravo.
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