Life, Love and Autism :: One Mom’s Truth about the Month of April

It’s April, y’all! For most people, it’s that time of year when April showers will bring May flowers. But if you’re the parent of a child on the Autism spectrum, this is the time of year when everything lights up blue because April is also Autism Awareness Month. I must admit, I have lit it up blue in the past, but now that I am entering a different stage of autism parenting, I can’t help but feel a bit conflicted about this month.

I believe the original intention of Light it Up Blue was a good one — to truly spread awareness. However, the celebratory tone that this month has taken pulls my heart strings in many directions. With my son getting older, I can’t help but feel a huge sense of urgency thinking about his future.  And as much as I want to “celebrate”, changing my light bulbs to blue will not ease my worries or change his diagnosis.  But I still have hope…one thing that Autism parents have in common is that we are fierce fighters and advocates for our children, in April and every month thereafter. This is our story.

The Early Days

Four years ago I wrote this post about our journey with autism and since then so much has happened. Daniel is now 10 years old. He still loves to swim, he still has an amazing smile, he is still the most amazing big brother and he is almost my height!  He is still in public school with the help of a wonderful team of teachers that are committed to helping him succeed. But autism has a funny way of constantly reinventing itself. Before we worried about hair cuts, trimming nails, and those pesky sliding glass doors at HEB and Target!

I really HATED those doors. These things were so incredibly hard for him to master. He couldn’t walk through them unless they were perfectly closed and then they had to open just for him. Imagine a four year old, cute as can be, staring at the HEB doors, frozen in autism mind time and not moving for what seems like an eternity. So you do what any sensible mother would do, you pick him up, screaming and wailing, strangers staring and walk through the door. True story, y’all.  Many times over true story. I mean, you have to get the groceries some at some point right? Because life y’all…LIFE.

Life, Love and Autism:: One Mom's Truth about the Month of April | Houston Moms Blog

A post haircut photo! Every haircut is a testament of HOPE for me.

Then there was the Happy Birthday song…Oh-Em-Gee…the Happy Birthday song! You can just imagine. Out of tune, loud, lots of yays at the end…total fiasco. Haircuts? DRAMA. We’ve added surviving the dentist to the list and we are still working on getting bloodwork done in less dramatic fashion. Bless the laboratory at Texas Children’s…they need a margarita… or two… after dealing with us! But we did it y’all…we have overcome many of these early challenges with hard work, repetition, therapy and the grace of God!

The Uncertain Journey Within

Even though we have mastered many challenges, bigger worries boggle my mind now. Will Daniel ever have friends? He has a few “friends” but they are not real back and forth conversation, play outside, let’s have a sleepover friends. Most of it is still parallel play.  He does have one friend that adores him and he adores her. She loves him just the way he is and I  adore her for seeing past the quiet and quirky. Will he have meaningful relationships as he continues to get older? Will he be able to get married one day? Will he be able to get a job? Will he be able to live on his own? So many questions that weren’t there four years ago. Maybe they were there but I simply chose to ignore them at the time.  My biggest fear is that he will be alone one day.

Life, Love and Autism:: One Mom's Truth about the Month of April | Houston Moms Blog

Just one of the many faces of autism.

Not too long ago, a boy in his class made the comment “He doesn’t do anything”, referring to Daniel and man…that stung. He wants to fit in and play. But it is SO hard for him.  My fellow parents, talk to your children about Autism. Talk to them about these classmates that have a condition that makes their brain work a little differently. You can’t always physically see Autism but it is there. Sometimes they have a hard time making friends, or playing. Sometimes they might stim – which is an involuntary movement of the body such as hand flapping or making a vocal noise – this just helps them to calm down, regroup, or seek stimuli. Teach your children kindness, empathy, compassion and inclusion towards the quiet, lonely child, whether they have autism or not. With 1 in 68 kids being diagnosed and 1 in 42 of them being boys, chances are very high your child will have a classmate on the spectrum or that your life will be touched by it.

Now don’t get me wrong, y’all. This post isn’t all worry-wart! I am so proud of Daniel and all that he has accomplished. Heck! I am proud of our little family because through all of these hardships we have clung to each other and to our faith in order to continue helping Daniel. His younger brothers have also learned a lot about differences because they see them in Daniel as well as other kiddos they have encountered while Daniel is at therapy. Our youngest still struggles a bit with understanding why his brother does or doesn’t do certain things. We shall call him…Work in Progress…but then again, aren’t we all?

The Future Journey

 I’m not sure what the future holds but I know that even though fear, anxiety and worry is abundant…it will not overcome.

To the mom that is just beginning this walk, please know that you are not alone. If you have a gut feeling that something might be off with your kiddo, get him/her checked out. Early intervention is KEY to helping our kiddos catch up on any developmental delays they may be experiencing. Your local ECI {Early Childhood Intervention} is a great place to start.

To the mom that has been on this journey for many years and now worries for her adult child on the spectrum, I see you and I am beginning to feel your worries too.

To the mom that deals with the kind of Autism that nobody talks about during this month of April, the non-verbal, low functioning side of this vast spectrum, I see you too. Your worries about trusts, managed care, future living arrangements, are real and raw. You walk this journey with exhaustion, yet with grace and love.

To the friend or family member that looks in from the outside and doesn’t know what to do, don’t be afraid to offer help. Sometimes a coffee, a run to the grocery store, or an hour or two of respite is all an Autism momma needs to recharge. Don’t be afraid to step up.

Autism research is underfunded in comparison to other childhood ailments, yet it is the fasting growing childhood issue in the US. I have hope that soon more funding will be allocated to finding preventative measures, treatments, even a cure. This epidemic is and we must remain active in finding a way to reduce these alarming numbers.

Every kid has a timeline. Daniel’s is just a little different and I know deep in my heart that he will be just fine, just fine indeed. In his own way, in his own time.

Life, Love and Autism:: One Mom's Truth about the Month of April | Houston Moms Blog

I will never give up on this guy.

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One Response to Life, Love and Autism :: One Mom’s Truth about the Month of April

  1. Avatar
    Maria April 3, 2019 at 2:24 am #

    Gracias!! Apenas empezando el camino.

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