Thursday, June 16, 2011

Not Those moments... These Moments.

If you have an autistic child, you find that not only does the condition fill you with concern for your child that is autistic; it does the same for subsequent children.

One of the cruelest and earliest symptoms of autism for some is regression. You have a perfectly happy and healthy baby that is hitting milestone after milestone, and then suddenly he/she is not. You also start to realize that skills your child used to have, are now lost or a struggle to achieve.

Bianca was about a year old when we noticed that she wasn't responding to her name as much. We just assumed that she was REALLY involved with whatever it was she was doing and was blowing us off.  A very brave friend of ours that used to work with special needs children brought to our attention that her behavior seemed abnormal and could be warning sign. I say “brave” because it takes a lot of courage to tell a friend of yours that you think that there MAY be something wrong with their child. It takes even more strength when you take into consideration that he knew of our struggle to have children. We had lost multiple pregnancies, my wife discovered she had a medical condition contributing to her struggle with maintaining a pregnancy and Bianca’s time in the womb was riddled with complications.

Through bad family planning we had Sofia, our second child, a year and 22 days after Bianca. Bianca had just started to regress and display symptoms right about the time Sofie was born. Once we went through the evaluations and figured out what was going on, Sofie was around three months old, and the worrying for her health and well-being began. Fortunately for me and my wife, we were still so new to the world of Autism Spectrum Disorder and getting everything that Bianca needed that we didn't have the time to obsess over the risk of Sofie also having Autism.

Flash forward four years later, and into the world comes our son. Luis is a beautiful baby boy, who is curious, mischievous and an all-out terror to his sisters.

I have never been the kind of guy that has to have a son. You know the type, the kind of macho guy that feels like he needs to have a boy to take over his kingdom.  Don’t get me wrong, I love having a son. It is great to be able to experience the differences in the genders as a parent. You certainly learn a lot about humanity and how we are wired as men and women. Our gender traits apparently kick in VERY early. I see my son doing things I would never imagine my girls doing. He was crawling and walking around furniture months before my daughters. He said “DA DA” before the girls too. He is active, spunky, brutish and constantly looks for approval from me and my wife… but then there are THOSE moments.

“THOSE moments” provide for sleepless nights, anxiety attacks, depression, self-loathing and outright fear.

·         Why isn’t my son looking at me the INSTANT I call his name?

·         Did he just turn that toy car upside down and start spinning the wheels a little too long?

·         Why hasn’t he transitioned to walking by himself yet? It has been a couple of months, and still no real first steps?

·         Is he making eye contact as well as my niece his age?

·         I glanced at the milestone chart at the doctor’s office and I noticed he isn’t quite doing everything he is supposed to be doing, when before he was ahead on the chart.

·         He is mouthing everything! Is this a sensory issue?

·         People tell me that my son looks like my autistic daughter. Is that because he has low muscle tone, or is it just that both are cursed with my horrible nose?

“THOSE moments” are the worst and a realization can come to you at any time. There have been several times recently at work where something my son did earlier in the day would suddenly lead to a massive panic attack at a moment that requires my complete concentration. I have found ways to snap out of it rather quickly, but the other day as I realized my son will be a year old in a matter of weeks and that the warning signs for autism could start kicking in at any time, I found myself shutting down. I felt light headed, hot and clammy, and like I was experiencing my surroundings as if I was underwater. I could hear what was going on around me, but it was muffled and I couldn’t really make it out. My co-worker had to ask me if I was OK as he saw I was not reacting properly.

“THOSE moments” rob you of one of the most fun parts of childbirth: Projecting the future of your child. If you have never had a child, or if all of your children are healthy, when the baby is born an amazing thing happens. In the blink of an eye you see their entire life flash before your eyes. All of your hopes and aspirations are placed upon this infant that is minutes old. It probably isn’t fair to the kid, but as parents we can’t help ourselves. You see your daughter walking down the aisle, you see your son’s first baseball game, you have them graduating college, getting married, having kids of their own and being successful… then you realize your daughter is only a few seconds old and is being poked and prodded by a group of strangers. But once you have a child that is diagnosed with autism… that goes away. There is a mourning process that takes place as you realize that a good chunk of those scenarios will never be realized.

You also find that it is extremely difficult to project the future for any children to follow. You don’t dare. It would just make the pain that much more intolerable if you next kid wins the autism lottery. The defenses go up, and you put all of your dreams for your child on hold for about 16 months. Once you are given the “all clear”. THEN you start to envision your child’s future.

So how do we, as parents of children on the Autism Spectrum, compensate? How can we fix it? Is there a suitable replacement?

I am afraid that it all comes with the territory. There are certain things, no matter how we try to spin it, that just can’t happen for the parents of children with ASD, but even though we have to carry this burden (among many others specific to parents of the autistic) there is a silver lining. I have learned an amazing thing through this struggle that no 12 step program or self-help tape, could ever teach me quite so effectively… live in the now. Take each day as it comes and chant the old “One day at a time” mantra. It sounds cliché, but I do think that a change in our mindset to focus on the now is paramount. Live in “THESE moments” instead of “THOSE moments”.

Each day my son advances and develops his personality, and I struggle to keep “THOSE moments” at bay. I fail often, but not so often that I can’t enjoy my son. He will be what he will be and there isn’t much I can do about that. In the meantime I will keep trying to focus on “THESE moments”. They are a lot of fun and extremely fulfilling.

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. What a wonderful tribute to all of your children, Lou! As I read the words you have written, I feel your pain, your love and more importantly, your wisdom that you willingly and beautifully sharing with others. I know that you are making someone else's journey through the autism realm easier and at the same time, giving yourself permission to be frightened and unsure. I work at a school that identifies autism spectrum and then educates infant, toddlers & elementary school children. May I, with your permission, pass along your blog for a few of our parents to read? I admire your courage, your strength and ability to write such a riveting blog.

  2. Jane… Thank you for the kind words.

    Please feel free to share any of my blog posts with whomever you please.

    I just hope that others out there can take comfort in knowing that they are not alone. One of the many things that I have rediscovered throughout this ordeal is the importance of community and giving back.

    The path may not be an easy one, but together we can make that path a much easier one to navigate.

  3. What a wonderful post! As I was reading it,I was so finding myself into it: my thoughts, my fears, my sudden burst of terror when trying to compare older and younger son. Older one has some autism traits (doctors still don't know for sure is he autistic or not), younger one is healthy. But sometimes, just sometimes, I think I see some similarities, and cold, terrible fear spills over me. And I just try to push it way, teling myself that I am justmaking things up. Definitely hope so.
    Once again,great post,and thank you for writing it, and sharing some great thoughts and solutions for dealing with fear and anxiety with us.

  4. Lou it's as if you take the words out of my mouth and the fears out of my heart. My son also has autism and I struggle with the same things. You are an inspiration and thank you for sharing!

  5. Hi, Lou! I was reading this and I have found myself in the same spot day after day. I have 2 boys on the spectrum. 6 yrs and 3 yrs old. Our newest member to the family is 14 months old now Her name is Hollyn Rose. I too looked and thought so many times is that normal?? do normal kids do that?? My boys were complete oposite of each other so I don't know what "normal IS". I get depressed and feel hopeless and helpless that I can't stop the enevitable. My daughter is delayed in several areas, she didn't hit but 1 or 2 of her milestones at 12 months. She says 1 word. Not momma not dadda, but Uh Uh (her version of uh oh) I'm proud for that word, but I just keep thinking to myself PLEASE Holl one more word or 2 more words... PLEASE DON'T BE AUTISTIC... for us its a very helpless feeling. We can't stop it we can't slow it down, we can't change it... we just have to deal day to day as it comes our way. I just keep thinking to myself... 3 outta 3.... all 3 have autism... and of course that makes the depression worse LOL I just wanted 1 neurotypical kid... why couldn't I just get 1?? but then I have to stop myself and look at my beautiful baby girl and think what a precious miracle we have been given... Thank you soooo much for your inspirational words...