Forever Comes Day by Day

When I wrote the most recent post, I left the most important issue out. It was not on purpose, nor was it conscious. It came to me as I was reading the kind and supportive feedback as well as in some conversations I was having.  So here it is. Part 2 of the previous post.


THEN:  I (secretly) hoped that autism would be a fleeting and brief blip on the screen. After all, she was just 3 1/2 when the official diagnosis came. I held on to the idea that RJC would recover by the time she went to first grade and would go on to be in a "regular" classroom, get her driver's license, go to the high school prom, graduate from college, get a job, apartment, relationship, marriage, babies...

• Though controversial, the concept of "recovery" is not unheard of - and I have no interest in debating this issue.  I also have a vague recollection of reading that some teeny tiny percentage of those diagnosed on the autism spectrum have a spontaneous recovery. I would daydream about her waking up in the morning and talking to me. Conversationally, about whatever was on her mind. I imagined my reaction. A slow dawning, then complete joy at being able to understand what she was feeling and thinking.

I did not express this to anyone and in fact, when asked if autism was lifelong, I would nod and say "This is definitely not something she will outgrow."


At some point, I came to believe that she actually would not outgrow her autism diagnosis but I still held on to the idea that even with her diagnosis, she would be able to have a conversation that included topics that were age relevant and that she would live independently but with some support. I did not have specifics in mind. Just the idea that we would need to live nearby and maybe she'd need some counseling and coaching on life skills.


Eventually, probably by the end of first grade, it was obvious that a recovery was not going to happen, no matter how many hours of behavioral intervention she had or how committed we were to helping her, or how many professionals we took her to, or what adjustments we made to her diet. 


There was no big mourning period or heartfelt conversation with my husband. It was sort of something that my brain knew and eventually my heart caught up with my brain.

NOW:  I know, with every fiber of my being, that her autism diagnosis is here to stay.

• I am very aware that recovery will not happen for her and I do not have daydreams about her being a typical adult.  It does not mean I am happy about it but I am not always sad about it. It does not mean I wish she was different but it also does not mean I feel ok that she has to struggle on a daily basis with so many issues.

My life is not what I pictured. That's just a fact.


Yes, I realize most people's lives are not what they pictured. Yes, I realize there are a zillion worse things than having a child with autism. Yes, I realize how lucky I am to have RJC in my life. Yes, I realize that I need to count my blessings.


Still, I do not think too many people consider what it would be like to have a child that stays developmentally many years younger than they are chronologically. Before autism, I can tell you with absolute certainty that this was not what I ever considered. I never thought I'd have a purple dinosaur living in my home after my daughter was about 5 years old, I never thought I'd still be looking for/paying for somebody to stay with my adult daughter so I could go to the store (or have an uninterrupted conversation with my husband, or sleep when I'm sick etc). I never thought I'd have to be an expert in educational law and would then need to use it at endless meetings. I never thought I'd have to learn to navigate the various systems that could possibly be helpful to my adult daughter. Most definitely, I never thought I'd be in a panic about how or where she would live when I die.


The title of this post comes from a dear and wise friend. I was speaking with her recently about my last post.  I said something about being panicked about autism being a "forever thing" when she looked at me and said these words. "Forever comes day by day." I knew that this was the post I needed to write and I also know that she is absolutely correct. Every day we are teaching her or practicing skills with her that she will need when we are no longer here. Every day we are working toward finding the agencies that will give her the supports she will need when we are no longer here. Every day we are noticing her language is improving and reinforcing it so she will use it when we are no longer here.


And every moment of every day we are loving her and she will remember that when we are no longer here.


Forever comes day by day.