If you know me, my family, you know that we love to stay positive on what Andrew has achieved since his diagnosis in 2012. I don't like to talk about the hard days, but they are a harsh reality in autism, regardless of function level.
This year, Andrew is in kindergarten. Not a special education kindergarten room, a regular ed full day kindergarten. Not just a regular ed full day kindergarten either. A kindergarten - First grade split class, with 40 other children. This year, as in years past, Andrew is excelling in his academics. My child who was not talking or potty trained 2.5 years ago is doing end of 1st grade math and reading at a 3rd grade level. He is making *massive* gains socially, has friends that he seeks out and wants to have play dates with!
With all of that awesome, his autism still exists. He holds it together, and holds it together at school all day though all of the sensory overload. Kids yelling, teachers redirecting, shuffles of paper, tapping of pencils, instructions being given out, noises in the hallway of other students. His own body fighting, almost as a betrayal, the movement he so desperately craves. He "fits in" We are told "you'd never know he has autism"
Then he comes home.
Our days at home are...hectic. That movement he resists all day is found at soon as his feet cross the threshold into our home. Shoes fly off, coats follow after, and the wiggles start. The running and crashing on to the couch, down the hallway in to his sister, now 2.5 years old, who has missed him all day. Tears from being overwhelmed. He has questions, "Who is coming to play with me today?" Referring to what therapist he has that day. Then comes the anxiety of what he will do in the evening with his therapists. Once one of "his ladies" show up, either Kalee, Rachel, or Sami, depending on the day, they make a plan that almost always includes dinos at some point. Most of the time he holds it together for them too.
Then the doors shut as they leave our home.
The wiggles return, the fight of bedtime begins, along with the anxiety of the dark or being alone. At this point we almost always have to separate him and Emmalyn because everything she does irritates him. He stims off of her, rubbing her head with his hands, they tackle each other back and forth, him not realizing his own strength and her her own limits, so it almost always ends in tears. We have fights on bathing, brushing teeth and using toothpaste, what is for dinner, and changing his cloths that are finally feeling ok on his body.
One may say "He is a child, he should obey"
One may not understand autism.
There has to be give and take, an understanding that everything we ask of him has the potential to throw his body completely out of sync. To us seemingly neurotypical adults, changing clothes may be seen as a minor inconvenience at most. To Andrew, it is getting used to a new place a tag hits on his neck or side. Getting used to it being long sleeve when he has worn short sleeves the 2 days prior. Socks not sitting right on his feet, or jeans rubbing on his hipbones when he had been so comfortable in his sweats.
I raise my voice more than I care to admit. Some days I wish I could just scream at him to get him to understand that something won't kill him, but I don't. I take a step back, take a breath and come back to give my kid who is having a hard time a hug and let him know I understand he feels uncomfortable.
It is stressful, I won't ever lie and say it's not. There can be so many unknowns. Not knowing if one more stop while running errands will lead to an abandoned cart in the middle of the store because he can't take one more second.
There is worry, I won't ever lie and say there isn't. I sill worry about his future! I worry about regressions, I worry if we are parenting him right. I worry if we are neglectful to Emmalyn's needs because of our focus on him. Even though so far she is in the clear, I worry about Em and her future. Wondering if we will hear the words "We are worried about Autism" again.
I worry about this baby in my belly. I worry about the judgment I know is out there on parents of special needs kids, deciding to have more children. The thinking we are selfish.
At the end of the day, every. single. day. I go to bed thankful. Thankful for the hard days because it makes the good days even better. I am thankful that Andrew has chosen me to be his mother in this journey. Thankful for progress, Thankful for a supportive partner, Thankful for a daughter who is forgiving when Mama runs out of patience.
Most importantly I am thankful that I was given another day to wake up and help my kid when the wiggles return.