The small moments

Let's just get this started by stating that I am a perfectionist. In my life certain things need to be a certain way or I struggle feeling content. I also tend to lean towards the all or nothing mindset. I never really developed this type of personality until I was pregnant with my son. It started with little things that I thought were related to the "nesting" phase, and figured they would slowly disappear after I delivered. I have been wrong about a lot of things and I was definitely wrong about that! Over the years my perfectionist mindset has only grown stronger and can cause me to experience extreme guilt and feelings of failure if I do not succeed at something or something does not go the way I intended. I think everyone struggles with these feelings to a certain degree, but they can turn nasty quickly if not addressed.

Having a child with autism can be very difficult with this type of thinking. Let me make myself clear about that statement. The child is not difficult, neither is the relationship, however, their slow and sometimes backwards development can be. When a child that does not have a learning or mental handicap grows, they hit milestones in an upward pattern. No matter how long some may take to reach them, they still stay in that upward trend. When a child with autism develops, their milestones look more like a zig zag. While they may reach a certain milestone, there is no gaurantee that they will not fall backwards and lose that skill. It is a scary and heartbreaking thing when your child regresses. It makes it difficult to celebrate the milestones, as you always have that little voice that tells you it may not be permanent.

At three years old our Lou was speaking.  He could say numbers, all of his letters, animal names, character names and sing songs. I have videos of him saying undersea creature names on a puzzle, counting to twelve, etc. We were so excited to see him progressing, we never even thought about a regression. Less than a year later Luke was completely speechless and still is to this day. We don't know what caused it, and have fought to regain his speech with little success. Needless to say it was devastating. To hear your child's voice form words, to see the start of the communication we so desperately desired, and to lose it all so quickly, that is a cruel thing.

Recently, Luke has been able to finally transition to underwear. After years of trying to teach him "the ways of the bathroom" he finally seemed to get it. We were beyond excited. To see Luke with that type of independence really gave us hope for his future. It was a milestone we wondered if he would ever reach. He was accident free for almost two months. I was still worried about the possibility of a regression and was adamant about keeping him on track. However, despite our efforts, just before spring break, Luke starting having accidents again. It started with one or two, and has progressed into sometimes five or more a day. With my all or nothing mindset I have been devastated by this decline. It felt and still feels unfair that this is happening again. It has been hard to celebrate the days he has fewer accidents because I have been so focused on the previous accident free days.

All week Lou and I have been reading "The Velveteen Rabbit" before bed each night. It was a favorite of mine and I have been wanting to share it with him for quite some time. I used to dream of my child sitting perfectly still listening to me read it with wonder in their eyes as i used to. Reading to Luke doesn't quite look like I imagined. He squirms, he makes noises, he giggles, he doesn't "pay attention". But we still read to him every night because we know he hears us. Whether he can show that is simply irrelevant; we just know.

We finished the story last night and as I tucked Luke in I thought about all the heartaches I have felt because of his regressions. Why did it hurt so much when he backtracked? Why couldn't I accept life for the way it was right now rather then the way it had been? 

Regressions can make you lose hope for the future. Lose hope for your child's future. They can strip you of dreams you have for your child's life and make you start over. They can make you feel as if you have failed.

Failure is like ivy. It will creep up on you slowly and subtly, and before you know it, it will have consumed you. 

It was last night, after I said goodnight to Lou that I realized, it is essential that I live for the small moments. If my focus is on what Luke can do tommorow or next year or in twenty years, I am setting myself up to feel failure. Because regressions come without warning. There is no predicting in autism. It is what it is.

However, if I choose to focus on the small moments, a short moment of eye contact in bed while I'm reading a story, giving me good night kisses, only having one accident that day, then I will always feel content.  Luke amazes me every single day, in the small moments, in the little victories. That is what I must choose to focus on. I need to celebrate the little things with as much vigor as the long term things because that is our reality. I can't predict the future of Lukes development, but I can't let fear of failure and regression hold me back from celebrating my beautiful child and all he accomplishes.

My child is picture perfect, and he has and continues to be the greatest thing in our family. No matter what he can or can't do tomorrow, he is healthy and smart and loving today and that is what I choose to hold on to. 

-Emily