It’s 2:20 AM. I am woke up to Trenton’s noises. The noises that I am accustom to hearing from Trenton. It’s the kind of noises that people make who are unable to talk.
“Oh, Trenton. Already?” I say half awake and half asleep. It is the middle of the night to most people but it’s the average time that we start our day.
“Juice.” He says. I know that I better get his juice for him as soon as I can before he gets to loud and wakes up Andrew. For several years I managed two boys with autism up in the night. For months upon months I dealt with their cries, tantrums, meltdowns, and all the other challenges that autism brings in the middle of the night. I do whatever I can to make sure that when Trenton wakes up we do our best to not wake up Andrew.
I give him his juice and he drinks it all in a matter of seconds.
“More juice.” He says demanding. Again, I get him another sippy of juice.
It’s been about two minutes since he woke up and now he is off and running around the house and he doesn’t stop until we leave for therapy five hours after waking up.
He runs in circles, bounces on his trampoline, runs up and down the stairs, back on the trampoline, back to running laps around the living room, kitchen, and dining room, and the cycle continues for hours.
I have my first pot of coffee drank by 5 AM and I finally start feeling like I am ready for my day.
By 7:00 AM I wake up Andrew and my stress and issues are doubled now. Two boys, both with autism awake now. Both boys with different challenges and both need one on one help.
Andrew is verbal…very verbal to say the least. It helps but it brings about another set of challenges. He talks about everything. He has to know every detail of what he wants to know about and he doesn’t drop the subject. I get asked about the same questions over and over and I have to repeat exactly what he wants to hear, exactly the way he wants to hear it. If I don’t, he won’t move to what I need him to do such as getting ready so we can leave for therapy and school. He questions everything.
Andrew has to have a certain amount of time in the morning to spend with his fixated objects and right now it is Angry Birds. He has to have time with his Angry Bird toys before we leave. If not, he isn’t leaving and/or it dictates his mood for the rest of the day.
Andrew takes a long time to do the smallest command. It takes awhile for it to process what I just asked him. He then questions it over and over. He goes into great detail of why he is questioning what I asked him to do. If he doesn’t like what I asked, he will argue or get very defiant.
While I spend a complete hour trying to get Andrew to transition to getting dressed, brushing teeth, and whatever else we need to do to get ready while battling his OCD issues, Trenton continues to do his obstacle course through the house.Everything in our life takes strategic planning! I have to be prepared for everything that comes our way and it is mentally exhausting.
I can go in more detail of our days and routine but does it matter? It doesn't compare to doing it and living it every single minute of your day
Each and every single day is a battle of many challenges against autism. Nothing comes easy. It is all hard work. We don’t know what “down” time is nor will we ever know what it is.
Behind all the hard work, we still have time to laugh and smile. However, behind those laughs and smiles is sadness and heartache. The kind that NEVER goes away. It is the kind of sadness and heartache that no parent should ever have to go through. It is the kind that sticks around until you take your last breath. I have learned how to deal with the sadness and heartache through my savior and Lord.
No one can understand the type of sadness and heartache that I am talking about. Not even the ones you feel the closest to. Therefore, through the strength that I find through God, I carry about my day smiling behind the pain and loneliness that comes with being a single special needs parent.
I do my best to block out all the pitiful things that people whine about. It is obvious that some people don’t know true pain, heartache, or even real stress and worry for that matter. The judging, negative remarks about others are so displeasing. If they only lived a day in my shoes, would they still be like that?
I know how easy it is to focus on what you don’t have in this world and especially what your children don’t have. It would be easier to not think about it if you were never around what you didn’t have. However, it is impossible to avoid what you don’t have in this world when it is all around you.
Nonetheless, I strive my best to be a woman and mother of grace and wisdom. After I have my moments daily, and yes they happen daily, where I secretly cry and wish for things that I don’t have, I get back on track of being thankful for what I do have. I pray and put my faith in the Lord and he guides me daily. He guides me on this road less traveled. A road that is full of the most amazing things that the majority of people never get to experience. God’s plan wasn’t for us to have the typical American dream. Instead, his plan is much more amazing. It may be full of pain and heartache but it can be very amazing and beautiful....and focusing on the blessings is what we have to do!