Hi. My name is Jessica. You might have seen my little boy in line at school this morning. You may see him in line at school most mornings. Maybe you have noticed that he is different from the other kids. Maybe you have noticed that we talk to Grayson in a special way. Maybe you have noticed that he loses control of himself from time to time. Maybe you have noticed that my son Grayson has autism spectrum disorder. And, if you did not notice that before…you probably noticed today.
You see, I am the mother of the little boy in line at school this morning who lost control of his body and his emotions. My son was the one making all of the noise, screaming and yelling just trying to be heard. My son could not understand why he did not get to be first in line today. My son, the same son who waits in lines at school every single day, just could not figure it out today. Today, he needed something different. And because he needed it so deeply, that need was the only thing that mattered to him. His body wiggled as he tried to explain his need. He sobbed tears of pain and frustration as his daddy and his teacher tried to explain the rules to him. He lost control of his body. He lost control his emotions. He lost control of everything. His need was in control. The way his needs are often in control of him. That is just one of the symptoms of Grayson’s autism that we encounter every single day.
In that moment there was nothing you could do to help. There was nothing anyone could say or do to calm him down. Once Grayson’s needs get that big, all we can do is stand back and help him pass through the moment without hurting himself.
This is a feeling I am familiar with. This is the most un-natural part of being Grayson’s mommy. When I see him needing something so deeply, and I am powerless to help him through it. And today, maybe just for a moment, you felt that too.
It is hard right? To watch someone struggling through something that we should be able to fix. I mean after all, we could just give into the need. Right? We could just let Grayson cut to the front of the line. We could let him be the leader. We could tell all of the other kids that Grayson’s needs are different and special, and that sometimes he needs to be in front. Sometimes, even when it is not his turn, Grayson gets to be the leader.
Except, that is not fair. If Grayson gets to be the leader whenever he wants to be, then he is not learning important life lessons. Then he is missing out on all of the things we wanted him to learn at school: taking turns, sharing, following directions, etc. And what happens to the child who was supposed to be the leader? They just have to accept that Grayson’s autism trumps their turn to be the leader? They just have to change and adapt because that is the thing that would make my life easier for the brief moment of time?
No for so many reasons, but mostly this; no matter what obstacles lie ahead of us on this parenting journey we refuse to accept that the rules have to change to accommodate Grayson’s autism. I refuse to believe that I cannot help my child exist in a word with rules. I say “NO WAY” to the idea that other kids will need to go without so that Grayson can have exactly what he needs. I love my son with every single ounce of my heart. And, because I love him so deeply, I refuse to let him off that easily.
Do not get me wrong, I know what my son is up against. I feel the weight of every single thing we put on his shoulders. I see all of the rules and expectations and guidelines that govern his life. I think every time that we introduce another strategy or treatment that it will be too much. I wonder how he can possibly handle just one more thing. I ask myself how I can ask him to be anything more than he already is.
And then one day at a time I see him rise to the occasion. I watch him learn and adapt to the rules. I see him accept the strategies that we implement. I see him use those techniques to integrate himself into the world. I see him figure it out. One challenging moment at a time; he propels himself forward.
Autism Spectrum Disorder or not; 4 is a really hard age. There is just so much that they cannot understand. We look to these little humans and we ask them to follow the rules and use their manners and to be kind and polite. We ask them to do things that most grown adults struggle with. And, on top of all of that we are trying to teach them to be compassionate and accepting and tolerant of difference. Difference that they cannot really understand. Difference that we do not really know how to teach them.
I do not know how to explain all of the really awesome things about my son to you. I know what I know because I live alongside him and travel this journey with him every day. And, I still do not have all of the answers.
I promise you here, now, that we will not ask for special treatment. I will never ask you to tell your child that they need to give up their spot so that Grayson can take over. But, I do ask this of you, show me patience and grace and understanding while we work through this. Because we will. We will work through this.
I will lead my son through a life with rules and obstacles and challenges to overcome. And, because I am raising him to do so…he will follow the leader. He will follow my lead.