Accepting the limitations that autism brings is one of the hardest parts of dealing with the diagnosis. That and wondering to what extent your child will be affected by them. I remember that at about this time last year I was at a birthday party and a good friend of mine, who's daughter is slightly younger than Nate was there as well. Her daughter was pointing to all of the animals on a board, naming them and making their sounds. Honestly, I was so raw at that point that I wanted to curl up in a ball and die. Nate was no longer saying mama. This was probably one of the key moments that led to me isolating both myself and the boys from peers for awhile. I couldn't handle having my kids around neurotypical kids. Obviously my friends and their kids were doing absolutely nothing wrong- in fact they were incredibly supportive- it was the pure normalcy of it that I couldn't handle. And it was such a different experience than the one I had the first time around. Jack was a VERY early talker. The other moms were amazed by him, I was proud, and at times I did have moments of smugness. The joke was on me. I have learned just how little my parenting had to do with Jack's speech development. Not that reading to him didn't have a positive impact, but much of it was just how he was wired. I never got why other parents were stressing so much about their child's lack of speech. I figured, it'll come. Oh man, that just makes me cringe now!
I didn't think the pain of that would ever get any better. I felt like I had lost too much, with both of the boys being affected by autism, to ever get to a place where I would be comfortable around our friends again. Am I there now? Not really. But I have realized that I am on that path. I am slowly able to "expose" (because that's how it feels) Nathan to more "normal" situations. Was it him I was protecting in the past? At the time I thought so. Nope. He most certainly didn't and doesn't notice other people's reactions to him. It was for me. Mommy couldn't handle it. And you know what? I think I had a right to that- I had to find my own way through this maze that is our life. But on Sunday, when I was at the farm with the boys and Nate was stimming, I could take a deep breath and accept that it was going to happen, that it was going to continue to happen, and it is ok. Getting to this point opens up a whole new world to us. Would I venture to take both boys to the mall by myself? Ummm, no. At least not by choice, or for "fun". There are too many triggers, and they are different for each child- it's like a minefield. But outdoor activities, small gatherings, playdates; I AM getting to a place where I can handle these as an autism parent. I can hold my head high while watching my kids do his thing. I can answer other parents' questions without becoming overtly defensive.
I will NEVER fully accept my kids' limitations. I will always be fighting to better their quality of life, to improve their functioning both at home and out in the world. But I guess I now understand that there is a huge difference between acceptance and feeling defeated. I can fight for them while appreciating who they are during the process. Nathan is doing the most awesome thing this week. Most parents would be absolutely thrilled by it themselves, when their baby is about one. He has been saying mama again for awhile now, but this week it's like something clicked and he has realized it's my name, that I come when he says it, that it gives him some power. I have never heard mama said this much...ever. I love every single second of it. If he is sitting in his booster eating lunch and he hears the click of my office door opening, he starts in right away, calling to me. He sometimes comes to the office door when he gets home from school and just stands there saying it until I come out (it's not hard to convince me). When I walk into his room in the morning to pick him up out of the crib he says my name. This time last year, I was honestly afraid that I might never hear that word come out of his mouth again. So now I can find my almost 3 year old saying "mama" completely fulfilling. I look at the other kids in our social circle that are his age (there are I think 6 within 2 months of each other) and I can find their speech cute again. I don't resent what I am missing with Nate- or not nearly as much. My friend's little boy is about to turn 1- I am preparing myself mentally for his speech to surpass Nate's shortly. It's not nearly as painful as I feared it would be. As long as we are moving forward in some way, I am ok. What a huge leap to make in a year! In terms of empowerment- accepting where we are with Nate gives me the ability to fully reconnect with friends that have kids his age again, and as I mentioned above, it gives me the confidence to take him out with me more. I can handle it emotionally when he has a sensory meltdown, or runs around with pine needles waving them in front of his face for an hour. Our whole family has come a long way. For instance, my mother in law took Jack to get a pumpkin at a farm a few weekends ago. She brought a small pumpkin back for Nate, but she also brought an extra long weed that she found- perfect for Nate to wave till his little heart was content. I almost cried, I was so touched. She too is reaching that point. My mom is constantly looking for opportunities to have therapeutic one-on-one time with him. And daddy? There just aren't words- he has become one of Nate's biggest cheerleaders. All of the people who love Nate are getting there. He must feel that right?
I didn't think the pain of that would ever get any better. I felt like I had lost too much, with both of the boys being affected by autism, to ever get to a place where I would be comfortable around our friends again. Am I there now? Not really. But I have realized that I am on that path. I am slowly able to "expose" (because that's how it feels) Nathan to more "normal" situations. Was it him I was protecting in the past? At the time I thought so. Nope. He most certainly didn't and doesn't notice other people's reactions to him. It was for me. Mommy couldn't handle it. And you know what? I think I had a right to that- I had to find my own way through this maze that is our life. But on Sunday, when I was at the farm with the boys and Nate was stimming, I could take a deep breath and accept that it was going to happen, that it was going to continue to happen, and it is ok. Getting to this point opens up a whole new world to us. Would I venture to take both boys to the mall by myself? Ummm, no. At least not by choice, or for "fun". There are too many triggers, and they are different for each child- it's like a minefield. But outdoor activities, small gatherings, playdates; I AM getting to a place where I can handle these as an autism parent. I can hold my head high while watching my kids do his thing. I can answer other parents' questions without becoming overtly defensive.
I will NEVER fully accept my kids' limitations. I will always be fighting to better their quality of life, to improve their functioning both at home and out in the world. But I guess I now understand that there is a huge difference between acceptance and feeling defeated. I can fight for them while appreciating who they are during the process. Nathan is doing the most awesome thing this week. Most parents would be absolutely thrilled by it themselves, when their baby is about one. He has been saying mama again for awhile now, but this week it's like something clicked and he has realized it's my name, that I come when he says it, that it gives him some power. I have never heard mama said this much...ever. I love every single second of it. If he is sitting in his booster eating lunch and he hears the click of my office door opening, he starts in right away, calling to me. He sometimes comes to the office door when he gets home from school and just stands there saying it until I come out (it's not hard to convince me). When I walk into his room in the morning to pick him up out of the crib he says my name. This time last year, I was honestly afraid that I might never hear that word come out of his mouth again. So now I can find my almost 3 year old saying "mama" completely fulfilling. I look at the other kids in our social circle that are his age (there are I think 6 within 2 months of each other) and I can find their speech cute again. I don't resent what I am missing with Nate- or not nearly as much. My friend's little boy is about to turn 1- I am preparing myself mentally for his speech to surpass Nate's shortly. It's not nearly as painful as I feared it would be. As long as we are moving forward in some way, I am ok. What a huge leap to make in a year! In terms of empowerment- accepting where we are with Nate gives me the ability to fully reconnect with friends that have kids his age again, and as I mentioned above, it gives me the confidence to take him out with me more. I can handle it emotionally when he has a sensory meltdown, or runs around with pine needles waving them in front of his face for an hour. Our whole family has come a long way. For instance, my mother in law took Jack to get a pumpkin at a farm a few weekends ago. She brought a small pumpkin back for Nate, but she also brought an extra long weed that she found- perfect for Nate to wave till his little heart was content. I almost cried, I was so touched. She too is reaching that point. My mom is constantly looking for opportunities to have therapeutic one-on-one time with him. And daddy? There just aren't words- he has become one of Nate's biggest cheerleaders. All of the people who love Nate are getting there. He must feel that right?
I can tell you the story with me. A lot of people who know me in OT said that I have comes to terms with the diagnosis pretty well. But I know there are times I faked that... especially if I have to work with individuals with autism and their caregivers.
ReplyDeleteOne good example is at school or in OT conferences- I see that there are a good bit of my OT peers who are greater presenters than I do. They are much more dynamic and can deliver presentations standing up and even pace around. It's not that I couldn't do it. It's just that the quality of my presentation will take a huge hit because doing what they do seem to spike my anxiety levels just enough that I look like a fool. And in professional environments, looking like a fool is the last thing I need.
Yes, I found a strategy that allows me to be an adequate presenter (and I have come a long way just to reach that!) But, I always am jealous by the poise some of my OT peers showed!