For some reason, tonight as I tried to get to sleep, I kept picturing a parent out there somewhere, a parent who has just been given the official word they have joined our club, that they have a child with autism. And I pictured what I would want to say to them, if I allowed myself to be completely honest. Here goes...
First I want to say to you---nobody in this world knows how your child's life is going to look 5, 10, 20 years from now. That's true for anyone, but from what I've seen, it's especially true for kids with autism. Maybe your child will start talking if they don't talk now. Maybe they will never say a world verbally. Maybe they will learn to read, to write. Maybe they will go to college. Maybe they will never progress academically in any way. Maybe they will have some talent that is incredible. Maybe they won't. The starting point, the point they are at right now, seems to somehow have very little impact on the eventual course of things.
And I honestly don't think that what you do, the therapies you get or the interventions you try or the diets you take on or the model of education you choose will make much of a difference. Certainly many people will say I'm wrong there. But it seems to me that our kids do what they are meant to do when they are meant to do it. How we react to them, what kind of people we surround them with, that matters, but just how we try to teach or train or guide them, the methods we use, the resources we can or can't afford, the diets we chose or don't chose to follow, the methods we embrace, the toys we buy...don't worry too much about them. Worry about surrounding your child with people who love her, who enjoy her, who want the best for her.
Pick your battles. Don't mortgage your future to move to the school district people say you should live in for the "best services". Don't spend every waking moment pursuing a therapy that others have told you must be done in the crucial, special, essential time frame of "no matter how early you started, it wasn't early enough". But DO fight with the medical doctors when you know something is wrong physically with your child. Fight to get them to take that temperature or give that shot or examine that stomach. That is a battle you must fight, one of the few essential ones.
Don't let anyone make you feel guilty for being overwhelmed, for being tired, for being in despair at times. Every single parent in the world has those feelings sometimes, but the big difference is that we simply don't get the breaks other parents do. That is the huge difference. Other kids go to friend's house. Other kids can play sports or join activities or even just get to be 12 or 13 and be able to stay at home alone. Other kids don't need to be watched every second of every day. I don't think, often, it's that our kids are even tougher to parent than "regular" kids It's that the parenting time we put in, over the years, is far more than with regular kids. And when you never, ever get a break, it adds up. You are going to have some very tough days.
Find some friends who get it. Find them online, probably, because although it's much easier to find support groups for parents than any respite ever, you aren't going to necessarily or even probably meet the parents at these groups with kids like your own. Autism takes so many forms. Find someone with a child a lot like yours, and when you do, talk to them all you can. Call each other often. Email. Visit, even if they live far away, if you can. Use my Facebook group if you need a place to ask for a friend. I honestly, truthfully don't know if I would have made it without my compatriot friends.
Give up on trying to reduce screen time, if you have a child who loves to watch the screen. Believe me, I was the parent whose kids were going to play only with wooden blocks, who would live for books and shun TV. But Janey loves videos. I can't picture her life without the movies she loves. They bring her great joy, and frankly, that brings me great joy.
Enjoy the heck out of the many, many parts of being an autism parent that frankly are just plain better than being a regular parent. I enjoy having a daughter who will never, ever be catty or exclusionary to other girls, a daughter who jumps with joy because we are going to take her for a car ride, a daughter who loves vegetables with abandon, who has never once argued with me about clothes or told me I was ruining her life or in fact ever done anything deliberately to hurt anyone, ever. Your reasons will vary, but believe me, there are great parts to being the parent of our kids.
Find ways to enjoy life even on the worst days. Even on the days when Janey literally screamed all day, on the mornings after she didn't sleep all night, even in between changing bedding over and over, or dodging being bit---even on the days I can barely even think about---there was coffee. There were stolen word game moments. There were 15 minute naps after begging my sons to watch their sister when I literally couldn't keep my eyes open. There were ways to live moment to moment to get through days that I didn't think would ever end.
More than anything else, I want to say that although it might seem right now like you've been given the worst news you can imagine---it isn't. There will come a day when you realize that you can't possibly imagine your child being anyone other than who they are. Just like everyone on this earth, they aren't perfect, but they are perfectly themselves.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Tuesday, February 25, 2020
Tuesday, February 4, 2020
Lip Gloss and Out of Place Cats
I went all of January without writing a post! I know I write a lot less than I used to. I think about posts I want to write all the time, and compose them in my head, but actually sitting down and writing doesn't seem to happen as often as it used to, partly because as Janey gets older, things are more stable. There is less drama to write about. But I know that as she is getting older, many of the people who read this also have girls getting older, and I want us all to still share our journeys, so I very much doubt I'll ever stop writing completely!
The title here comes from an interesting insight I got into Janey last week. Her class went on an all day field trip to the mall, and her teacher asked us to send in some money in case Janey wanted to buy something (and also for lunch). My guess would have been that Janey would have no interest in buying anything non-food---she usually doesn't. But when she got home, we found a variety pack of lip gloss in her backpack, from H&M. We were quite surprised! Later that weekend, her teacher wrote me a note to say that as soon as they walked into the H&M, Janey picked out the lip gloss. The teacher asked her a few times if she was sure she wanted it, and indeed---she was sure! They helped her put some on after buying it, and reports are that Janey was delighted.
I love finding out in ways like that what Janey likes. I don't wear any makeup and really never have, so Janey hasn't been exposed to much at home. It's so cool she even knew what it was, and that, as it typical for a 15 year old, she had an interest in it that wasn't something she learned from her mother. I often think about how much of Janey's life is controlled by others. I guess at a lot---what she wants to wear, how she wants her hair, where she'll enjoying going---and she lets us know if we are on-base a little, but I think often we only really get a message from her if she dislikes something very much. I would love to know what clothes she would LOVE, or what activities she would adore. It's one of the parts of her difficulties in communicating, or our difficulties in finding ways that work to communicate, that makes me the most sad.
The out of place cats? Janey likes order. She likes things to be where they are supposed to be---remotes lined up in a row, shoes with the left on the left and the right on the right, unused lights or TVs turned off, furniture never moved. This need for order extends to living beings. The cats frustrated her constantly with their randomness. They show up when they feel like it, disrupting symmetry she feels should exist on the couch or floor. Our older cat, Tommy, spends much of his time now in the bathroom, sleeping. But tonight he ventured into the kitchen, and Janey immediately noticed him and tried hard to push him back into where she felt he should be. We stopped her and tried to explain, as we have a million times, that cats do what they want to do, but it's pretty futile.
We as humans have learned to give Janey the order she needs. It makes things a lot easier. But at times, as the years go on, it wears us down, to be brutally honest. For example, the living room, when Janey is home and awake, belongs to her. It's where she watches her videos and does her routines---rearranging things, checking thing, pacing and jumping and laughing. But we don't have a huge amount of living space, and Janey doesn't tolerate much intrusion on her domain. In the car, the music is Janey's choice. We listen to what she wants to listen to, and change songs when she says to. What the rest of us want to hear doesn't get heard.
I imagine someone reading that last paragraph who didn't know Janey or who didn't have their own child like Janey would have one of two reactions. Many people might say "Those parents need to get control back! They are giving that girl way too much power!" Or, conversely, they might say "Why is that mother complaining about the small stuff? Didn't she just talk about how little Janey can say what she likes? Doesn't she remember how hard things were in the past?"
To those who might say Janey is being given too much control---well, that has been a choice. We made a choice to do whatever we could to give Janey more happiness. She was not very happy for many years. This made our lives hard, but far more importantly, it made her life hard. There is still so much in life Janey can't control, can't completely understand. There is much in life she isn't going to be a part of. So we made a choice to let her control what she can control, to let her enjoy those things she most loves, her movies and her music.
But to those who might rightfully ask "well, then, why are you complaining?"---well, I am not a saint. Sometimes, Janey's needs wear us down. They wear us down because there are no breaks, no credit saved up. We can put on the songs she wants a thousand car rides in a row, and then one day we might really, really want to hear something we like, and if we insist, Janey melts down. Badly. And once she melts down, her mood can be affected for literally weeks. It's like her world starts to feel out of balance, and it takes a long time for it to feel right again.
If you don't have a child like Janey, you might be thinking "She'd learn in time! She just needs to learn that she can't always have things her way!" To those hypothetical people thinking that, I invite you to read the blog entries about Janey from about ages 5 to 10. Those were the years we gave their wise advice a try. Those were some very tough years. We tried, for many years. It was a failure. Janey was very unhappy, and we were very unhappy.
So, the conclusion, I guess, is that we as Janey's parents can live with sometimes feeling fed up. We can stand to put her happiness first. It's what we have chosen. However, I'm not going to be afraid to admit it is hard. I don't think I'm doing Janey a disservice to say that. I think I'd be doing a disservice to anyone reading here to pretend it's all easy. I know many people have told me they feel less alone knowing that there are others finding this whole special needs parenting gig hard at times. That doesn't mean we don't adore our children. That doesn't mean we don't value them, or that we won't do whatever it takes until our last breath to make their lives as meaningful and happy as we can. It means we are human beings, doing the best we can.
The title here comes from an interesting insight I got into Janey last week. Her class went on an all day field trip to the mall, and her teacher asked us to send in some money in case Janey wanted to buy something (and also for lunch). My guess would have been that Janey would have no interest in buying anything non-food---she usually doesn't. But when she got home, we found a variety pack of lip gloss in her backpack, from H&M. We were quite surprised! Later that weekend, her teacher wrote me a note to say that as soon as they walked into the H&M, Janey picked out the lip gloss. The teacher asked her a few times if she was sure she wanted it, and indeed---she was sure! They helped her put some on after buying it, and reports are that Janey was delighted.
I love finding out in ways like that what Janey likes. I don't wear any makeup and really never have, so Janey hasn't been exposed to much at home. It's so cool she even knew what it was, and that, as it typical for a 15 year old, she had an interest in it that wasn't something she learned from her mother. I often think about how much of Janey's life is controlled by others. I guess at a lot---what she wants to wear, how she wants her hair, where she'll enjoying going---and she lets us know if we are on-base a little, but I think often we only really get a message from her if she dislikes something very much. I would love to know what clothes she would LOVE, or what activities she would adore. It's one of the parts of her difficulties in communicating, or our difficulties in finding ways that work to communicate, that makes me the most sad.
The out of place cats? Janey likes order. She likes things to be where they are supposed to be---remotes lined up in a row, shoes with the left on the left and the right on the right, unused lights or TVs turned off, furniture never moved. This need for order extends to living beings. The cats frustrated her constantly with their randomness. They show up when they feel like it, disrupting symmetry she feels should exist on the couch or floor. Our older cat, Tommy, spends much of his time now in the bathroom, sleeping. But tonight he ventured into the kitchen, and Janey immediately noticed him and tried hard to push him back into where she felt he should be. We stopped her and tried to explain, as we have a million times, that cats do what they want to do, but it's pretty futile.
We as humans have learned to give Janey the order she needs. It makes things a lot easier. But at times, as the years go on, it wears us down, to be brutally honest. For example, the living room, when Janey is home and awake, belongs to her. It's where she watches her videos and does her routines---rearranging things, checking thing, pacing and jumping and laughing. But we don't have a huge amount of living space, and Janey doesn't tolerate much intrusion on her domain. In the car, the music is Janey's choice. We listen to what she wants to listen to, and change songs when she says to. What the rest of us want to hear doesn't get heard.
I imagine someone reading that last paragraph who didn't know Janey or who didn't have their own child like Janey would have one of two reactions. Many people might say "Those parents need to get control back! They are giving that girl way too much power!" Or, conversely, they might say "Why is that mother complaining about the small stuff? Didn't she just talk about how little Janey can say what she likes? Doesn't she remember how hard things were in the past?"
To those who might say Janey is being given too much control---well, that has been a choice. We made a choice to do whatever we could to give Janey more happiness. She was not very happy for many years. This made our lives hard, but far more importantly, it made her life hard. There is still so much in life Janey can't control, can't completely understand. There is much in life she isn't going to be a part of. So we made a choice to let her control what she can control, to let her enjoy those things she most loves, her movies and her music.
But to those who might rightfully ask "well, then, why are you complaining?"---well, I am not a saint. Sometimes, Janey's needs wear us down. They wear us down because there are no breaks, no credit saved up. We can put on the songs she wants a thousand car rides in a row, and then one day we might really, really want to hear something we like, and if we insist, Janey melts down. Badly. And once she melts down, her mood can be affected for literally weeks. It's like her world starts to feel out of balance, and it takes a long time for it to feel right again.
If you don't have a child like Janey, you might be thinking "She'd learn in time! She just needs to learn that she can't always have things her way!" To those hypothetical people thinking that, I invite you to read the blog entries about Janey from about ages 5 to 10. Those were the years we gave their wise advice a try. Those were some very tough years. We tried, for many years. It was a failure. Janey was very unhappy, and we were very unhappy.
So, the conclusion, I guess, is that we as Janey's parents can live with sometimes feeling fed up. We can stand to put her happiness first. It's what we have chosen. However, I'm not going to be afraid to admit it is hard. I don't think I'm doing Janey a disservice to say that. I think I'd be doing a disservice to anyone reading here to pretend it's all easy. I know many people have told me they feel less alone knowing that there are others finding this whole special needs parenting gig hard at times. That doesn't mean we don't adore our children. That doesn't mean we don't value them, or that we won't do whatever it takes until our last breath to make their lives as meaningful and happy as we can. It means we are human beings, doing the best we can.
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