What's in a family photo? Do you know?
Yes. This is our family photo. And I love it. And I love our family. And these last 5 years have been the most difficult years of my life. Recently I posted our family photo on facebook. I was shocked. 70 likes? Or something like that. 20 comments. For our little page and our small number of friends, I thought those numbers were pretty high. Don't get me wrong, this is a great photo. We are who we are. We have some great times, some hilarious kids, a great husband, great neighborhood, amazing church family... wonderful family. But we also have something else in our home. We have autism. It's such an interesting.... diagnosis... situation. What do you call it. Maybe one day I will say that I am so thankful for what autism has taught our family, but I will be honest and say that since our diagnosis in August and our discovery of how autism is affecting our son Noah, I have nothing good to say about autism. The only gift it brings to us, that I can see right now, is that it has forced our hearts to stretch way beyond what we ever thought was possible.
What would you do if you had someone come over to your house, yell at you, yell at your kids, wreck stuff, refuse to play games, refuse to stand in line, interrupt constantly, touch everyone's stuff constantly, and be incredibly confrontational if anyone does it back to them. What would you do? It's what we live with every day. Part of me wants to paint a picture and say that it's not so bad. But it is. Every day, multiple times every day, every hour, what we do is forgive, take a deep breath, curse under our breath, pray under our breath, walk away, sing, play the music louder, leave, come back, hold, ask for forgiveness...
Sometimes I get hurt because things happen between Noah and people at the pool, people at the store, people at the park, people at McDonald's, people at the library, people at our house... people at their houses, our neighbors in front of our house, and I have to apologize for him and protect him from.. people. From you. Look at that little firefighter's face in the family photo. So sweet, so totally sweet. When he laughs at my jokes, I feel like I have won some great prize. When he shares his toys or some treat with his sisters, I am so proud. When he comments on how beautiful me new earrings are, I melt. When he puts on his pig costume so we can go to the grocery store and buy Valentine treats... I grin. he is one of a kind. But do I ever get chewed out. Or ignored. Or given terrible stares. Or you.. or whoever he was, might look at me and say straight to my face, "What is wrong with that kid?" And I do my best not to chew you.. or whoever he was.. out.
Really, what WOULD you do if you saw my son yelling at me in the grocery store? You don't know him. You don't know me. You don't know that his plans just got changed and he's not handling it very well. You don't know that he has no concept of "wait" or "time" and that he doesn't know what talking loud is.. and you don't know that the slightest thing causes him to be so anxious that he stops thinking and freaks out. So would you, like the fine specimen at the store get in his face and let him know that "you are very disrespectful boy"? I understand. I do. But you don't. And I try not to chew you out. But for the sake of my son, who is more important to me than you are, I do let you know that you have crossed a line and have no right to speak to me or anyone in my family that way.
Autism is hard. It's complicated. It's complicating. Want to have a nice evening? Don't invite us over. Want to have a great phone conversation? Don't call me. Want to get a quick response to an important issue? Don't email me. Want anything normal? Don't get the Karlssons involved. I really don't like what autism does. Don't even get me started on the topic of church. But it is where we are at, and we are trying to figure it out.
So thanks, all, for your likes. I feel your love. Just.. the thousand words this picture paints doesn't come close to the reality of "us." We ARE all the wonderful things you see. But we are also broken, limping, full of questions, frustrated, angry, looking for answers... and for me personally, a little bit defensive of your vision of my family. Yes, I have my dream. I always wanted to have a family. And I've got it. AND WE ARE SO BEAUTIFUL!!! I love every one of my children. I love my husband. But if you could take autism out of our equation, you would get no argument from me. I try to imagine Noah without the limitations of autism and I know he would say the same thing.
What would you do if you had someone come over to your house, yell at you, yell at your kids, wreck stuff, refuse to play games, refuse to stand in line, interrupt constantly, touch everyone's stuff constantly, and be incredibly confrontational if anyone does it back to them. What would you do? It's what we live with every day. Part of me wants to paint a picture and say that it's not so bad. But it is. Every day, multiple times every day, every hour, what we do is forgive, take a deep breath, curse under our breath, pray under our breath, walk away, sing, play the music louder, leave, come back, hold, ask for forgiveness...
Sometimes I get hurt because things happen between Noah and people at the pool, people at the store, people at the park, people at McDonald's, people at the library, people at our house... people at their houses, our neighbors in front of our house, and I have to apologize for him and protect him from.. people. From you. Look at that little firefighter's face in the family photo. So sweet, so totally sweet. When he laughs at my jokes, I feel like I have won some great prize. When he shares his toys or some treat with his sisters, I am so proud. When he comments on how beautiful me new earrings are, I melt. When he puts on his pig costume so we can go to the grocery store and buy Valentine treats... I grin. he is one of a kind. But do I ever get chewed out. Or ignored. Or given terrible stares. Or you.. or whoever he was, might look at me and say straight to my face, "What is wrong with that kid?" And I do my best not to chew you.. or whoever he was.. out.
Really, what WOULD you do if you saw my son yelling at me in the grocery store? You don't know him. You don't know me. You don't know that his plans just got changed and he's not handling it very well. You don't know that he has no concept of "wait" or "time" and that he doesn't know what talking loud is.. and you don't know that the slightest thing causes him to be so anxious that he stops thinking and freaks out. So would you, like the fine specimen at the store get in his face and let him know that "you are very disrespectful boy"? I understand. I do. But you don't. And I try not to chew you out. But for the sake of my son, who is more important to me than you are, I do let you know that you have crossed a line and have no right to speak to me or anyone in my family that way.
Autism is hard. It's complicated. It's complicating. Want to have a nice evening? Don't invite us over. Want to have a great phone conversation? Don't call me. Want to get a quick response to an important issue? Don't email me. Want anything normal? Don't get the Karlssons involved. I really don't like what autism does. Don't even get me started on the topic of church. But it is where we are at, and we are trying to figure it out.
So thanks, all, for your likes. I feel your love. Just.. the thousand words this picture paints doesn't come close to the reality of "us." We ARE all the wonderful things you see. But we are also broken, limping, full of questions, frustrated, angry, looking for answers... and for me personally, a little bit defensive of your vision of my family. Yes, I have my dream. I always wanted to have a family. And I've got it. AND WE ARE SO BEAUTIFUL!!! I love every one of my children. I love my husband. But if you could take autism out of our equation, you would get no argument from me. I try to imagine Noah without the limitations of autism and I know he would say the same thing.
Comments
My heart goes out to you and Noah.
Each thing he notices about you, each bit of interaction, of sharing is a real victory. Bask in the victories. :)
I can't write from personal experience in the home - only from observation in the family of friends: Yes, it will take a lot of patience and a lot of love. But with patience and love, it can get better ... gradually.