Sunday, December 31, 2017

CLOSING 2017 (from an autism perspective)

It has been some months since I have posted. I get into moods where I do not really want to think about autism. This mood lasted a while longer than others.  In any case, I think a look back and a look forward is always worth taking the time for so here it is.


Whoosh. That is how quickly 2017 went by! I am not sure anything major has occurred in terms of RJC and autism. Many small things for sure. We still have the big question of "what next" looming and to be honest, I am not sure that will be solved in 2018 either.


What I will say is that a big part of 2017 was watching our gal mature. Yes, she is still light years behind her peers developmentally and that will simply always be the case. Her personal growth, however, has continued. Her language is considerably better - her vocabulary as well as her grammar. This results in less frustration and more social connection. She is doing much less screaming, only went through our wall one time this year, and generally seems more settled.  All of this means that Hal and I have had more time to spend together enjoying an occasional movie or dinner out. I even travelled to Canada TWICE! I know! Who would have thought...??? 


Challenges continue because, well, autism. Here are just a few of our issues:


1. She needs 24/7 supervision as the concept of safety is just not there. If there were to be a fire, the electricity goes out, some creeper trying to get in our house, an important call that needed to be answered, we could not count on her to know what to do.


2. Her eating habits are a humungous challenge and though we were able to wean her off some of the more processed foods that were full of sugar, salt, and empty calories, we have not found much to replace it with. Her diet is mostly bagels or cheerios with an occasional strawberry or carrot accompanied by water or lemonade. Very limited. Makes me crazy.


3. She is obsessed with the calendar and likes to "test" us on what is happening on what day. I often fail. I do not have the memory that she has so when she asks "What day in 2018 are we going to the (fill in the blank) I will often get it wrong. Much to her frustration. She needs to repeat these conversations literally multiple times a day. Could be up to 50. No exaggeration.  It is important that we stick to the script so if we get it wrong - back to the beginning.


Actually general obsessive behavior abounds. Needs to bring specific food and videos when we visit the grandparents, needs specific DVDs for various car trips, needs to have the refrigerator organized a certain way, etc.


4. Clothing tends to be tossed out on a regular basis because it is ripped. It is ripped because there is some tiny string that was making her crazy and she pulls at it or cuts it until the actual clothing rips. Once there is the smallest hole she will no longer wear that piece of clothing and it is trashed. It gets pricey and she often wants to replace that piece of clothing with the EXACT SAME piece of clothing - a challenge in and of itself.


5. Yelling occurs for no reason that we can see. This does not mean there is actually no reason. It just means that we missed what set her off. This also means that there is little we can do to help other than hope it passes quickly. Sometimes it does. Other times, not so much.


6. She is still unable to express important things consistently.  If we ask what she did during the day she may answer accurately or not at all accurately or not at all. We still take guesses as to how she feels physically. At one point she came home with an awful, huge bruise that has been taking a very long time to heal. She did not talk about it, simply covered it with a zillion bandaids. Luckily the program gave us an idea of what happened. Still, it took a while to get a thorough picture of the incident since she was unable to share. Always makes me wonder what else we should know that has happened to her during the day but that she cannot share.


The list goes on but really - it's autism - which is such a complicated, all encompassing aspect for all of us who are close to RJC. It affects our marriage, our friendships, our general outlook toward life. Not necessarily in a negative way but not necessarily in a positive way. Just in its own autism sort of way. It is an "is."


What is my hope for 2018 and autism? Same as always. That we find a way to give her the best of us and that we find a way to keep her safe and happy - not just in the present but in the future. That she continues to grow and gain skills that will help her communicate and socialize with the world at large.


A happy 2018 to all of you. Thank you for being here and supporting our family as we continue our adventure.