I know what you are thinking. "Don't you mean love-hate thing? Love-don't love sounds weird." Well, welcome to my world. Things can be just plain weird. For instance, to say that I love autism sounds really bizarre, and yet there are things about it that I love. For me to say that I hate autism may make sense but for me it is almost too harsh. Some days I can shout it from the mountaintops. I will try to explain in the best way that I know how.
First I will start with the negative. I really don't love autism. When I was expecting my little Luke, I dreamed for him. I dreamed of him playing little league and horsing around like little boys do. I dreamed of all the great things he would tell me about - his make believe adventures and all the things he wanted to be when he grew up. I dreamed of what his voice would sound like when he said "I love you Mommy." Not to say this will never happen. I hope with all of my heart that it will. But I don't know. Stinkin' autism.
I really do not love that Luke sometimes has problems processing all the sensory stimuli around him and sometimes it overloads his little system. He can't express it to me verbally so there are those times when all he can do is meltdown. It is like a tantrum but about 100 times worse. There is little I can do but wait it out. It is heartbreaking to see your child go through that and feel powerless to help. All I can do is pray.
I don't love that he is developmentally behind his peers and instead of being at the level of other 3 y/o children, he is more at the level of a 12-18 month old when assessed for language and fine motor skills. He is making progress but it is still disheartening to hear that he is so far behind. It is hard to watch him with "normal" kids because his differences are more evident. And yes, I said "normal." Or maybe I should say "neuro-typical" because that is what children who do not have any neurological impairments are called in the healthcare world. My child is not considered "neuro-typical." So I sometimes feel that he is not normal. Sounds horrible, doesn't it?
I do not love the looks that I get all too often from strangers in the grocery stores and other busy places when Luke is not having a good day and may simply appear as a child in need of more discipline. Those stares hurt. I discipline my child. If discipline cured autism, he would be "neuro-typical" by now. Maybe it is a pride issue. It is like an indictment on my parenting skills, or perceived lack thereof. Those experiences exhaust me.
I love autism. Sounds a little weird to me too. I love my son. He is a gift from God. Psalm 139 tells me that God formed him and knew him long before I ever did. He created Luke in me, knowing exactly what he would be like, autism and all. Luke is Luke. As much as I had dreamed for him, I can't imagine him any other way. At least, not right now. I see his progress with every passing day and week. That is a testimony to God's grace and mercy in his life.
He can't tell me that he loves me, but when he smiles at me and hugs me squeezes me as hard as he can , I know. When he puts his little chubby hands on my face and smiles big enough to show me his dimples, I know. When he nuzzles his little nose into my neck and giggles, I know. When he kisses me all over my face until it is wet with slobber and we are both laughing, I know. He can do this to show me his love and I adore it.
I love the people that I have met because of autism. I am a part of a community of people who, though very different in so many ways, have a common bond. I can empathize with them and they with me. We get each other. If one of our children are having an especially difficult time, we can simply look at each other and just know. No judgment is passed. Maybe an understanding look or a quiet prayer or help if needed. But no condescending looks or harsh words. We just get it.
I love that autism has driven me to my knees. This journey is hard. Beyond hard. I know that I can't do this without the Lord and on the days that I try to do just that, I fail miserably. It is only by His strength that I can make it, that my family can make it. I need to depend fully on God on this journey. Autism reminds me of that.
Every day is an adventure. Yesterday was an exhausting mess. So glad God's mercies are new every morning. Trusting in that promise because I need His mercies and His grace daily to get through all that autism and life have to throw my way today.
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