Friday, August 5, 2011

Memory Lane

It happens to anybody that is a parent. One day you look at your kid, and it hits you. “He/She is (insert age here) years old? How did that happen? Where did the time go?” You try to value each day with your child and give it the weight it is due, but life gets in the way. You have to work and do things around the house, and you need time to unwind with a little “me time”. The next thing you know, your kid is about to start kindergarten and you start to understand first hand another part of the cycle of life. Your kids get older. Next you start to panic because you realize that the clock of mommy and daddy being the center of their universe is ticking. It is a small window in the grand scheme of things. Next begins the phase in which you try to stay relevant and involved enough in your child’s life that you don’t get shut out during the teen years and hope that you have nurtured your relationship enough that your children feel comfortable coming to you in difficult situations.

As my friend and I were talking about how far our children have come and how much they have grown, she mentioned that she broke out some old home movies from when her child was younger and couldn’t believe how much a human being could change in such a short amount of time. We talked about the perception of time and how 5 years seems like nothing to us now in our late 30’s, but that when we were kids, 5 years seemed like an ETERNITY. We crowed about how much our kids have progressed, and how fortunate we were.

As I lay in bed at 4AM staring at the ceiling, my thoughts were consumed by this conversation, it finally clicked as to why that conversation, that moment, was echoing loudly in my head. I only allow myself to go so far down memory lane… then I turn back. My subconscious has created a mental road block that is unhealthy, but also probably incredibly common for parents of Autistic children.

When I look back at my memories of my autistic daughter Bianca, I tend not to look back past her first birthday. Not only do I not look past, I actually seem to have blocked most of it out. Even now as I sit here and write this, I can only think of a handful of events from Bianca’s infancy. The memories that I do have seem to be mostly about alarms that Bianca was sending out letting us know that something was wrong. Early warning signs that now I would recognize as indicators of ASD. I remember that she crawled late, and walked late. I remember her mouthing everything. I remember generally that she was the easiest kid in the world to take care of and that she was a ham in front of a camera. I also remember her birth clearly… and that is about it. Interactions that we had, fun times we had, cute things she did… specific things that I can clearly remember with my neurotypical daughter Sofie, I cannot conjure up with Bianca.

Bianca at 3 weeks showing early signs of problems. ;-)

Maybe this is a common occurrence for parents of multiple children. Perhaps it is more common for parents that had kids in close succession, but I still find it strange. Did my mind actually block these memories out to protect myself? Am I really so fragile that I can’t look back at more na├»ve times without it damaging myself further? Am I just afraid? I will admit that just thinking about a time in which I didn’t have to be consumed with Autism Spectrum Disorder seems so long ago that it barely seems like it happened. I did live 35 years of my life without giving it so much as a thought except for Rain Man and a few specials I saw about savants. None of these examples even come close to showing the world what life is like for families dealing with ASD. My life consists of fighting chaos at every turn and trying to develop routines that will help Bianca to thrive and feel comfortable while trying to ensure that my other kids do not resent their sister for the restraints her condition put on our daily lives.

It could be that I feel it is unfair to Bianca. As if remembering a time when she was still “perfect” would somehow indicate to my subconscious that I am disappointed in her current state of imperfection. I do try to avoid negative thoughts when it comes to Bianca because I don’t see it as being productive. Bianca is what Bianca is. As her father I love her unconditionally, but if somebody were to ask me if I would take away her Autism if given the opportunity… absolutely. But I don’t want to have it taken away for a few moments only to come back to reality. That is what those memories would do… give me back my daughter at a time before Autism robbed me of my projections for her and my dreams and aspirations for her life. I don’t want to get stuck there. The present is reality, and we have work to do. If I were to allow myself to remember the times when everything seemed perfect, I may not want to come back to the present. Life was much easier then and certainly a lot less complicated.

Perhaps the reason for blocking out those early memories is as simple as I am not ready for them right now. This is the digital age. The pictures are a click away. There is a mountain of video sitting on a shelf on my desk that I could go through at any moment. Yet I must admit that even the thought of going down to grab a video and watching it fills me with an anxiety and fear that makes me not want to travel very far down memory lane.

I wish I had a concrete answer. Maybe none of these are the reasons for my hang-up. It could be that they are all contributing factors. I am confident that someday I will tear down the road block... just not this day.

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

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  1. Loved reading your blog, Lou. Your family is blessed in so many ways and you are blessing them with your powerful words.

  2. Once again, so many common points. We live on 2 different sides of World, and yet there are so many similarities in our past and present. Maybe that's with most of us-parents with child(ren) with special needs.
    Great post!

  3. My daughter is five, and autistic. She's going to Kindergarten in the fall (with much help). As I read this blog I tried to decide if I also suffer from this block, and I've decided I'm just not sure.

    I think being with my daughter day after day I tend not to see the changes and progress that I know she's making. And for me that's one of the most difficult parts, watching her neurotypical big sister with all her firsts. . . and watching her seem to tread water. I think maybe it's time to break out some of those home movies and give them a once over. I have a feeling they might actually make me HAPPY instead of sad. Let me maybe see some of the strides she's made SINCE the diagnosis, instead of remembering the day-to-day struggles. . . the treading water. . . the falling behind.

    I "followed" you. . .

  4. Our first, who is now five, was late doing everything....he was diagnosed at age 3 with ASD. Now we have a 4 month old who seems to be making her milestones....but as you know 1 in 9 now.....
    So with every smile, every giggle, every looking to mom as I walk in the room and every babble I can't help to wonder..."will she loose it all?" Will she turn 18 months and be a different kid? Because if so, isn't that kind of a sort of death? If that were to happen, I too would not be able to look back at videos of a smiling happy "tuned in" baby.

  5. Lou, I just found your site and i thank you for your honesty, I have 3 boys and it is my middle son Matthew who is 14 that is diagnosed with autism. Your memory story hits close to home, I am an OT assist. in the schools and i still have to check myself before walking into a preschoolers IEP because it brings me right back to all of the raw emotions I felt when Matthew was first diagnosed, looking to, no begging anyone for answers and figuring out the sad truth is even the best doctors sometimes have no answers. It took me a long time to figure out to let go of the guilt of not "doing" enough and knowing that without a doubt i LOVED him enough! Again thank you and keep up your wonderful work.

  6. One of the hard parts about having your child's world out of balance in one dimension is that you never know what's linked to it- and what isn't.

    All the "alarms that Bianca was sending out letting us know that something was wrong" that you listed were true of my first born- who is neurotypical, and just fine and dandy now. Remembering x about one child but not another is not necessarily blocking (awkwardly, I only remember my youngest's first word, and that because it was such a whacky first word; this annoys the others). If you are indeed blocking because you think you should have gotten the message sooner then that (imho) is inappropriate guilt.

    My guess is that your not remembering a lot of things is one part normal life in baby/toddler land, and two parts your focus on the challenge at hand. That is, once you realized that something was seriously amiss, you went into crisis management mode. Try thinking of some other time in your life when you had a complex, challenging and urgent problem to solve- and see how much you remember of daily life outside of that challenge. My guess is not much. You have obviously put a lot of time and effort into finding ways to help balance Bianca's world- while also keep the rest of your life, and your family's life, going.

    Although we live in an age of endless chronicaling of our children's lives, this stage- at just 5! - is not a looking back age, even if Bianca's path had been totally smooth and she was an only chaild. For all parents, this is still the full-on looking forward part. We are in the mid-teens, and I think we are just about to come out of that stage. Looking back at old pictures is something we rarely do- we have them, but we are too busy living life forward. Be kind to yourself.