April is Autism Awareness Month

Austim Awareness Month

Three years ago I didn’t even know this designated month existed. Scratch that. I actually did know it existed- just didn’t know that it would ever have any significance to our family.  Isn’t that how life happens though? You are navigating it daily and then something happens that halts you. It’s the feeling you get when you click “send” on an email and immediately realize you sent it to the wrong recipient!

I’m not a neurologist, occupational, speech or applied behavior therapist, but I am the Mom of an incredibly silly, fish loving, rough housing, dance- till- he- can’t- dance- no- more, son with autism. It doesn’t make me an authority on the topic but it does make the architect of my son’s journey.

There are millions of books, research studies and journals on everything related to autism spectrum disorder, and those are valuable. However, when I reflect on the last few years, it wasn’t until I lifted my nose out of those books, slowed down and truly observed my son did I really begin to understand his behaviors.

Here is my short list of what you should consider looking for if you have determined that your child has some behaviors that you are not too sure about.

  1. The Eyes Have It– I knew Preston was on the autism spectrum by the time he was two. He would “zone out”, stare and fixate on moving objects like a ceiling fan, struggle to make or maintain eye contact, and he more often than not, not look my way if I called his name. In addition, there were many days when I would look in his eyes and he would look past me, almost as if he was on another planet.
  2. Night Owl Mayhem– There are toddler- like sleep patterns and then there are “will he ever drop?” sleep patterns. We started noticing that Preston wouldn’t go to sleep at night. As a matter of fact, he could stay up for 24 hour easily. I would go down the hall at night to check on him and he would look up at me like he was ready to go downtown to the newest night club!
  3. Say What? –  Preston went from babbling and cooing to saying absolutely nothing for while. He became a professional pointer and hand guider but words were scarce. Although during that time we realized he needed tubes in his ears for reoccurring ear infections and while it restored his hearing, he was still hard pressed to talk and still is.  Pay attention to language development- it is a very clear clue.
  4. Non-Verbal Notables– When we would go to places that were busy, filled with florescent lighting, and loud, Preston would scale my body like a squirrel! Once in my arms he would shrug, flap, or move his head rapidly almost as if he was trying to shake off all the stimulation. If a loud noise (voice, vacuum cleaner, loud music) would sound, he would jump and flinch consistently.
  5. Nobody Puts Baby in the Corner- Unless your child has autism and then he may put himself in the corner alone! This is a tricky one because he plays alone beautifully and for hours (which in a way is great because he is quiet and completely occupied) but wouldn’t engage with any other kids. He could be on the playground standing almost on top of another child and wouldn’t notice them, make eye contact or engage in play.

Today we navigate the world of special needs with an arsenal of specialists, wonderful schools and programs that help Preston and our family work on and embrace the symptoms that come along with autism spectrum disorder. If you are witnessing some of these behaviors, please note that autism is indeed on a spectrum, which simply means the severity and types of symptoms can vary greatly.  Take time to observe your child and get an assessment sooner than later!

Now, if you do end up with a diagnosis of autism, go ahead and panic and flip out because telling you not to isn’t authentic. I describe parenting a special needs child as a mix of all the stuff you would encounter with a neuro-typical child plus a layer of what the hell???  Think of the journey as a bully taking your bike as a child. In order to survive and thrive as a parent of a special needs child you must wake up every day figuring out how to get your bike back!

I’ve condensed my advice on parenting a special needs child into 50 easy steps for your convenience. Scratch that. I can do it in 6.

  1. Trust Your Mommy Gut- I repeat, trust your gut! You know what you are seeing or not seeing and that is enough. You don’t have to have letters behind your name to validate what you are seeing. You are credentialed because you are a Mom- period.
  2. Be Okay With the Gray– Each child is different and every doctor has a different opinion. You won’t be getting all the answers upfront and the situation won’t be black and white because autism isn’t black and white. Repeat to yourself daily that you are not in control and when you have more information you will navigate the best you can based on that information.
  3. No You Didn’t Just Say That!– You will have to endure a large amount of insensitive, ridiculous, make you want to slap someone types of comments. From asking you if you’ve seen the movie Rainman to people repeatedly telling you that they think you are imagining what behaviors you are seeing in your child. My favorite comment is: “Pam, Preston can’t have autism, he is so cute.” Really?  The people around you mean well, they just literally don’t know what to say or do to assist you. Don’t put the burden of knowing exactly what to do or say on them. You will have to rewrap friendships (some won’t stick around), recalibrate your expectations regarding your schedule, and resist the urge to lash out at people who say crazy stuff to you.
  4. Manage the Battlefield of Your Mind- This is critical to survival. You are going to be around a lot of people but often feel alone. Don’t fill your mind with self-defeating, people pleasing, image obsessed, perfectionist type messages.  Stop your brain from absorbing negative messages of how things could turn out for your child and start living in the here and now and celebrate the small victories!  We suit up every day for battle in the name of our son. We are armed with the best of intentions, positive attitudes, killer karaoke and dance competitions, love that is bubbling over and the most important thing, laughter.
  5. The Pity Principle– Be prepared for the fact that not only will people make crazy comments they are going to show you pity. They will feel the need to help you escape your life, send you books, tell you to try kale, essential oils, compare your child to someone else’s , give you a coupon to visit a hyperbaric chamber to cure your child, etc.,

Spoiler Alert: The least helpful will most likely be those in your immediate family and some of your closest friends. Cut them some slack, they don’t get it, and they don’t have to! Don’t let this throw you off your game. Demonstrate the same unconditional love that you bestow on your children!

Don’t Go Overboard– parenting a special needs is a marathon, not a sprint. You don’t want to use up all of you energy in the beginning of the race. You should absolutely look into getting your child the services he/she needs and try techniques that you think will be of assistance, but you should under no circumstances feel like you need to become the expert. Stop yourself from making every conversation you have be about autism. Don’t go to every support meeting and don’t put pressure on yourself to read all literature. If you get distracted doing that, you miss out on the opportunity to meet your child where he/she is, to soak up all the things they can do and the defining moments that make the journey equal parts difficult and amazing.

Autism Awareness Month
Pamela Benson Owens
President and CEO, Edge of Your Seat Consulting, Inc.
Pamela Benson Owens is President and CEO of Edge of Your Seat Consulting, Inc., a development firm committed to helping individuals leverage their strengths for success. In this capacity, Pam tours around the US delivering customized training, strategic planning, fundraising consulting, program development, curriculum design, keynote speaking and executive coaching for corporate clients, school districts, non-profits, higher education institutions, religious entities, and small businesses. Pam and her husband Arlyn are the proud parents of Allyson Sinclair (7) and Preston Alexander (4).

 

 

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