As special needs parents, we do see progress; some things get better over long periods of time. Sometimes it's little things. Sometimes we even start to forget how hard the struggle was to get where we are now. Sometimes we do forget that autism is hard. While my son's disability is nowhere near the severity of this woman's child, I too, can forget that autism is forever; it is a member of our family in every day of our lives. He has trouble at school, at home, at the grocery store, at the park, and the list goes on and on. Some days are better than others but it is always there. It's in the scuffle at school, the meltdown during a meeting, at the park when people stare, or when kids walk far enough around him so they won't be forced to interact with him.
This week, I have been reflecting on the milestones Ethan has hit in the four years since his diagnosis. He has overcome so much, by leaps and bounds, in such a short span of time. But as he ages, I forget that new problems will arise. Autism never goes away; it just brings new challenges in all shapes and sizes. And it makes me hurt for him. I can't imagine what must go on in his head most days. I honestly don't think I would want to know. How could I? I wouldn't want to know all of the struggles, fears, anxiety, frustrations, and emotions that affect him every second of the day. I wouldn't want to be in his head when he is having trouble finishing a task or answering a simple question. I wouldn't want to be in his head when he's treated badly by people that don't understand or care about him. He's so brave to be able to do all of those things. And he doesn't even know it.
Autism has taken a lot from him: Developmental skills, life skills, abilities, emotional and social skills. He has to learn things and even relearn things that he should have been able to learn with age. He works every day to keep up with his peers, teachers, classroom, and grade level expectations. All while simultaneously repeating words and phrases, stimming so much he can't focus, getting so frustrated he lashes out, dealing with people who don't understand him, getting anxious about what's next in the routine, and not having relationships with other kids his age. But yet, when I hear the "These are the things he needs to work on.." speech, it knocks the wind out of me. I forgot. I forgot that it is my job to help him stay on track; to give him the encouragement he needs to keep working, and the praise he needs to hear when he's doing a great job. Because autism never stops for him. Why should it stop for me?
The same woman posted another blog about being her son's "person." That even with a great relationship between her husband and son; her son always prefers her. She goes on to say that it can be physically and emotionally exhausting a lot of the time. It mostly certainly can be. But that's why God put me here; To be his person. To be his sisters' person, too. I'm their MOM. Who else should do it? I am so blessed and I try really hard not to take my family for granted. So I devote my life to him and his autism. Not because I have to. Because I am his mom. I should want to do that for my son. I'm his person.
My son is so compassionate. He's smart, sensitive, and sweet. He also has a temper on him that could make a grown man cry. But he's such a special person. I can't hate autism because autism makes him who he is; the good and the bad parts. I can get mad at autism, as I have been this past week. But I could never hate it. Without it, he wouldn't be the quirky little man I'm so proud to call my son. He's proud to tell people he has autism. Like when he introduced himself to a new kid in class, all he said was "I'm Ethan and I have autism!" Or when we wrote a note to his two best "bros" asking them for a playdate with my phone number at the bottom.
I wouldn't want to take away his beautiful blue eyes any more than I would want to take away his autism. It is part of who he is on the inside. Yes, autism is forever. And yes, autism is hard. But loving him? Loving him is the easy part.
