Today is April 2nd, World Autism Awareness Day. Maybe you’ve seen the “Light it Up Blue” ads or are wearing blue today in honor of a loved one who has autism. I’m glad people are recognizing the need for Autism awareness. There is a sense of support that lends itself to those who have a family member with Autism. The thoughts I’m jotting here are some things I’m aware of as a mom of a sweet boy with autism not only today, but every day. Autism is not glamorous but it is amazing. It is our reality and we are aware of it. Pretend for a moment this was a reality show…well here’s just a few reality stories from our little family… 🙂
1. Lobby Lady
Some days I’m more aware of Autism than others. I’m aware of the challenges that we face in our family. Just the other day, I was taking Isaiah to an appointment for Speech and OT (Occupational Therapy) and the battle to get into the door was quite a doozie. While most days he leaps out of the car to go to his appointments, that day he wanted to stay in the car. I’m guessing it was partially related to fact we were driving daddy’s car (which we didn’t know would be the case) and while on the road, he was just fixated on turning right instead of me taking the normal left that we do every week into his appointment at the last minute. Just the smallest thing can set a meltdown in motion. And once a meltdown is in motion…buckle up because it will be quite a ride…at least until something better comes along to fixate on! That day we made it inside the doors about 5 minutes (which was pretty quick all things considered,) and he began full on biting and kicking and throwing anything at me he could get his hands on. I quickly morphed into Ginga the Ninja mom and put into practice my restraint skills and backed up against the front office desk and slid down to the floor to get some support and hoped to prevent him from harming himself or others. The waiting room was fuller than normal that day of other moms and their perfectly behaved little children sitting quietly in their seats waiting to be called on…and though nobody said a word, I could feel them watching as I attempted to calm Isaiah down with a “hug”–holding both of his wrists tightly across his body like a hug as he screamed and struggled to get loose. I felt myself dissociate from the situation, fighting back the urge to cry (which I did later believe me!) and turned my thoughts to my source of strength, “God you are my rock. My fortress. My strong tower. In you I take refuge right now.” Even in those awful wrestling match tantrum moments, God is always there. And just at that moment of helplessness, as my ninja powers were wearing thin, a sweet mom noticed my purse was in the way, and asked, “can I take your purse for you?” That simple act of kindness was all I needed to feel supported at that moment. In those moments, we may not know how to help, but we can do something. And I will never forget how supported I felt in that moment of feeling so alone with an out of control child. Sometimes all that needs to be done is to just stand there and say, “I’ll just stay here until you think of how I can help.” Just being there. Isaiah eventually calmed down when he saw his favorite therapist was ready to bring him to his appointment, but those moments in between are a battle sometimes. It was such a reminder to me to never judge a parent whose child is acting out…we never, ever know the full story, but we can always offer to be there. Thank you mom in the lobby for being there. You were my hero that day.
Line Up. Isaiah loves American flags. He is obsessed with them. Anything he does can be related back to an American Flag! Our front yard has 100s of garden size American flags aerating the grass in the spring and summertime. He loves to line them up and watch them as the wind makes them flap in perfect rows. He sure does love straight lines, and I see this in his daily activities. These flags have become his toys. There are mom flags, daddy flags, even little baby flags with broken legs, or flags that are old grandpas. He told our neighbor that he is a “flag farmer.” He faithfully plants his flags year after year, and wonderful care of them! This past week we took a quick trip to grocery store and I asked him to put items from the cart onto the conveyer belt. Everything was perfectly arranged in a straight line…a 4 inch space between every item. Applesauce and Gluten free pretzels lined up like little soldiers ready for battle.
He loves to put things in rows, sequence and thrives on order. (which is really a blessing because I tend to be more of a free spirit!) He loves writing lists and if we don’t have a list, we often have a meltdown later in the day, so we love lists too! Routines are our best ally. Our daily list might look something like this:
1. Wake up at 6:00
2. Cuddle at 6:05
3. Get dressed. Undies, socks, pants, shirt.
4. See the sunrise
5. Breakfast at 6:30.
And so on…
Last night, I tucked Isaiah into bed and we said our prayers. I admit I was being a little silly in my prayer and he said, “Mommy, now you’re just being silly. You need to stop that praying and just go out now so I can get some rest.” Ok then, little man! He never ceases to put a smile on my face in such unexpected ways.
There is autism at our table…we love to celebrate huge victories of a bite of rice or even smelling food that is unfamiliar. I cried when he ate a sandwich for the first time. And just yesterday he ate two bites of eggs. These may seem like small victories, but for us they were monumental.
There is autism in our church as we watch Isaiah dance freely to the music, offering up his own form of praise and worship…or the time when he went to be baptized and stripped down to his underwear! Only to find the water in the tank was freezing cold! So he screamed at the top of his lungs and sat along the ledge of the baptism tank with his Captain America briefs facing the crowd, as he cheered for each participant in his skivvies!
There is autism at school…he loves to figure out number patterns. He learned to count by 60s well into the 1000s while the other children struggle to count to 30! Or watching him read books that are waaaaaaay beyond his recommended reading level, and spelling “hippopotamus” as a 3 year old. Or writing the alphabet Z-A instead of A-Z just because he can.
We are all in this together.
My hope is that as awareness of autism in our society continues to spread, the judgmental stares will get less and less, and people will not say foot-in-mouth things like, “Get a handle on your son!” Or, “If he were my kid he would be grounded” during a screaming fit in the store because the music was too loud and hurting his ears. There are people who just probably won’t get it. Other sweet and well meaning moms and dads will say things like, “Oh I know what you are going through, my child had a meltdown the other day too…” Thanks but I know you don’t get it. They mean well, but they don’t get it. And that is ok. We don’t have to fully understand in order to care. have no idea what it is like to be in their shoes either, and that is OK. It really is. God knows what it is like to be in my shoes. I hold on to that hope that the meltdowns will fade over time (and they are!), that Isaiah will grow up to be well loved and that he will be all that God has intended him to be. With our without a diagnosis of Autism, there is a little boy in our lives who we love so very much! His spirit is fully alive and full of so much love! He happens to have Autism and we are totally aware of our love for him!!!
We are not the perfect parents. I’m sure there are parents who would do things differently if they were in our shoes. But they are not in our home, or our shoes, so I try not to worry about those people who aren’t there! (Now I sound like a crazy lady…well at least that’s out in the open now! Just kiddin.) We don’t strive for perfect because we never will be perfect…some days simply surviving is as good as it gets!!! Every family has their set of challenges, and there is a fresh grace available for any trial that we face. Truth is, we will never be perfect, but we do have the perfect God who has given us the perfect love for Isaiah. And He can do the same for anyone! He gives strength and solutions to our every issue, and I have certainly found that to be true. When my hubs or I feel low on fuel, we run to God. He is our refuge. There are moments when Isaiah is having a moment and I ask God, “What do I do?” And an idea will pop into my head and will be the key to a peaceful evening. God knows our kids better than we do! He created them and knows just what they need. As parents, we are His kids too, and He promises to walk with us and give us instruction if we ask for it.
These promises in Isaiah 40 are such a wonderful comfort to me…and God has proven faithful time and time again. He gives us strength to keep going and no matter what challenge we are facing, God is there.
Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint. (Isaiah 40:28-31)
I’m so grateful I don’t have to drag my feet just to get by, but we can SOAR! God will help us to rise above our circumstances and challenges with a light heart and joy for the journey. Be blessed my friend!
Peace and Giggles, ❤