Dear Staring Lady,
I was the woman sitting next to you in the fast food place that will remain unnamed, in the somewhat snooty suburb that will remain also unnamed. We were both with our husbands and one daughter. Your daughter was about three, a very cute and obviously bright little thing. My daughter was 13. She was the one you were staring at.
You know, you forced me to admit I've been lying, to myself and others. I have been saying that staring doesn't bother me any more, that I don't even notice it. But I guess what I really meant was some kinds of staring don't bother me. Little kids staring? No problem. The kind of staring that also includes a smile, a look that says "Your daughter is beautiful and interesting. I see she might also have some kind of disability. I'm pleased to see her, and kind of fascinated" That kind is okay too. But your kind of staring? Just plain old gaping, openly and for long, long moments? No, I'm not okay with that.
The thing is, we don't often eat in public. But we decided to try it, today. And we were thrilled at how well Janey did. She was wonderful. No screaming, no running around, no outbursts or tantrums. She was happy. She sat eating her food with joy. In line, before that, she was so happy she jumped a bit, but not in a way that would affect anyone else. As we told her over and over, we were very, very proud of her.
But you stared. You kept looking at us, and not with a nice look. It was a look that seemed to say "Why are weird kids allowed to be out here when I'm trying to have a meal with my perfect family?" Maybe that isn't what you were thinking. But you sure fooled me.
You know, I can judge too. I didn't stare, but I listened. I listened when your little girl got upset because you got her grilled nuggets, not ones with breading. She wasn't used to that. She said "These aren't nuggets! They are CHICKEN!" I thought that was pretty cute. But you insisted she eat them. She got upset. I was thinking "What's the big deal? Who cares? You have a daughter that can talk, that can express opinions. Enjoy that! Get her some regular nuggets if that's what she wants! Or at least say something to her to let her know you understand change can be tough. Don't you get that it's amazing, it's a small miracle, it's something to treasure, that you have a child who talks so easily?"
I could understand your staring a little more if Janey could possibly have been bothering you in any way. But she couldn't have been. She sat there and ate, much more nicely than your little girl. Okay, it was obvious we had to help her with a few things. It was obvious, probably, that she was developmentally not where most 13 year olds would be. But is that something that is so bizarre, so creepy, that you need to STARE ALL DURING OUR MEAL?
It's funny. The rudest people, the people most prone to staring, seem to be the ones that have lives that on the outside look enviable. We don't get stares much in the convenience store near our house, the one frequented by an eclectic mix of folks, few of them looking like your suburban ideals. In fact, there and in the stores in our section of the city, Janey gets mostly smiles, sometimes hugs, sometimes high fives. Or she gets no notice at all, which is fine too.
You could have smiled at us, even once. You could have talked to Janey. You could have glimpsed at her subtly, if you had to. You could have ignored her completely. You had a lot of options. But the one you chose sent a pretty powerful message.
As your child whined about her nuggets, Tony and I tried to ignore you and talk. Our conversation ambled to somehow talking about how in cartoons, if you get on a scale and you are very heavy, the pointer on the dial of the scale pops off and spins around in the air. I said something like "whoa-whoa-whoa-whoa", imitating a spin, and spun my hands around. Janey loved that. She started saying it too and spinning her hands---not loudly, but hilariously. We all had a good laugh. We enjoyed that moment a lot. I dare say, we enjoyed it a lot more than you were enjoying lecturing your three year old on healthy eating. I hope you never have a child like Janey. You might think that's a kind wish. It isn't. You'd be lucky to have a child as much fun, as fascinating, as beautiful and as special as Janey. Stare at that, lady.
Sincerely, A Proud Mother
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
Saturday, March 24, 2018
Tuesday, March 20, 2018
Luck and Joy
Janey's annual IEP was last week. For some reason, I was feeling edgy about it. I don't know why. It's about the 30th IEP I've been to as a parent, and there wasn't any big issue I needed to address.
When the meeting was over, I realized what I think had been getting me worked up. It was the feeling that somehow I SHOULD have something big to insist on or ask for. And I didn't. We left the meeting extremely pleased with all we had heard. We are so lucky. Everyone there is truly on Janey's team, not just in name but in reality. They love Janey. They get a kick out of her. They see her as an interesting and valued person. And that is what I've always wanted in those who worked with my children, and it's what I've almost always gotten.
One great piece of news from the meeting is that Janey's teacher will have her again next year. 7th and 8th grade at her school works that way, I found out. I adore Janey's teacher. She is absolutely wonderful. I loved hearing her stories about Janey---stories that showed she knows how to encourage Janey to do her best while still respecting her for who she is. The OT at the meeting was terrific too. One thing she said that really stuck with me was that she laughs 10 times during a session with Janey. I love that attitude. Janey can truly be a lot of fun to be with, if you get her, and the people at her school get her.
It was a very nice weekend last weekend. Freddy was home all last week from college. Then, Friday night, as Tony was making dinner, I heard him say "You aren't going to believe this! I can't believe this!" I could tell by the sound of his voice that something very unusual had happened. He sounded shocked---almost scared. I jumped up and saw, coming through our door, my older son William! He had flown in from Chicago, where he's a grad student at the University of Chicago, as a total surprise! He wanted to give us a shock, and he did! He was here from Friday to Monday, and having all three kids in the house for the weekend---well, that was wonderful.
That night, we ordered takeout, and were all eating it together in the living room. It struck me something seemed different, a little off. And then I realized what it was---Janey was just sitting and eating and being part of the crowd. She wasn't crying, she wasn't making demands, she wasn't needing extra attention. We were just chowing down as a family like we love to do. It was one of the first times I remember us all being together in a regular type family activity where she didn't stand out at all.
I wonder often---if someone was viewing us from outside, how would they see things? I know, in reality, there are still many, many times in an average weekend that Janey gets very upset. There are almost always times when she screams, or bites her arm, or demands a car ride RIGHT NOW, or so on. When I look back on a weekend, though, those times sort of get edited out now. I think we can do that because unlike in the past, they don't last for long. She gets upset, we deal with it one way or another, she settles down and it's fine. It's a combination of things. We learn more all the time about how to best help her, and she learns more all the time about us---that we WILL take her for a ride if she say we will, that if we don't have her preferred food right that moment, we WILL get it in time, that if she isn't getting all our attention right that second, she will get it when it's her turn.
Many people with a child like Janey seem to find the kind of settled peace that we have as she gets older. I think a lot of it is acceptance. If I put things in a negative way, I could say it's also giving up on certain things. We don't feel much sadness or despair over what Janey can't do, most of the time. She is who she is. We don't expect her to never get upset, never scream or cry or bite her arm. We know those times are part of her, just like the times she dances and sings and laughs.
As William was getting ready to go home yesterday, he remarked on Janey. He said "You know, overall lately she's a joy" You should have seen her when she saw William at first. She was overcome with happiness to see her big brother. At one point, he took her with him to Dunkin Donuts, and he couldn't believe how she waited patiently, how she just enjoyed the experience, being with her brother and getting a treat. William has been here for all of it. Hearing him say that---it meant a lot. Freddy said similar things too. She is lucky to have the brothers she has, and they are lucky to have her. And we are lucky to have all three of them.
When the meeting was over, I realized what I think had been getting me worked up. It was the feeling that somehow I SHOULD have something big to insist on or ask for. And I didn't. We left the meeting extremely pleased with all we had heard. We are so lucky. Everyone there is truly on Janey's team, not just in name but in reality. They love Janey. They get a kick out of her. They see her as an interesting and valued person. And that is what I've always wanted in those who worked with my children, and it's what I've almost always gotten.
 |
| A joyful reunion |
It was a very nice weekend last weekend. Freddy was home all last week from college. Then, Friday night, as Tony was making dinner, I heard him say "You aren't going to believe this! I can't believe this!" I could tell by the sound of his voice that something very unusual had happened. He sounded shocked---almost scared. I jumped up and saw, coming through our door, my older son William! He had flown in from Chicago, where he's a grad student at the University of Chicago, as a total surprise! He wanted to give us a shock, and he did! He was here from Friday to Monday, and having all three kids in the house for the weekend---well, that was wonderful.
That night, we ordered takeout, and were all eating it together in the living room. It struck me something seemed different, a little off. And then I realized what it was---Janey was just sitting and eating and being part of the crowd. She wasn't crying, she wasn't making demands, she wasn't needing extra attention. We were just chowing down as a family like we love to do. It was one of the first times I remember us all being together in a regular type family activity where she didn't stand out at all.
I wonder often---if someone was viewing us from outside, how would they see things? I know, in reality, there are still many, many times in an average weekend that Janey gets very upset. There are almost always times when she screams, or bites her arm, or demands a car ride RIGHT NOW, or so on. When I look back on a weekend, though, those times sort of get edited out now. I think we can do that because unlike in the past, they don't last for long. She gets upset, we deal with it one way or another, she settles down and it's fine. It's a combination of things. We learn more all the time about how to best help her, and she learns more all the time about us---that we WILL take her for a ride if she say we will, that if we don't have her preferred food right that moment, we WILL get it in time, that if she isn't getting all our attention right that second, she will get it when it's her turn.
Many people with a child like Janey seem to find the kind of settled peace that we have as she gets older. I think a lot of it is acceptance. If I put things in a negative way, I could say it's also giving up on certain things. We don't feel much sadness or despair over what Janey can't do, most of the time. She is who she is. We don't expect her to never get upset, never scream or cry or bite her arm. We know those times are part of her, just like the times she dances and sings and laughs.
As William was getting ready to go home yesterday, he remarked on Janey. He said "You know, overall lately she's a joy" You should have seen her when she saw William at first. She was overcome with happiness to see her big brother. At one point, he took her with him to Dunkin Donuts, and he couldn't believe how she waited patiently, how she just enjoyed the experience, being with her brother and getting a treat. William has been here for all of it. Hearing him say that---it meant a lot. Freddy said similar things too. She is lucky to have the brothers she has, and they are lucky to have her. And we are lucky to have all three of them.
Thursday, March 8, 2018
Fill-In-The-Blanks talking
We've always done a bit of fill in the blanks talking with Janey. It goes something like "I am crying because...." and hoping she'll fill in the reason, or maybe "The food I want is...." We've had mixed results over the years---generally, honestly, not that great results. But once in a while, it works. However, lately, for whatever reason, it suddenly seems to be working very well, and it feels like a little bit of a communication breakthrough.
Here's a recent conversation with Janey, with her words in italics. The background is that she wanted a shower just before I knew Tony was about to come home and give her a car ride, something she'd want even more.
"A little bit ago, Janey wanted to take a...shower. But Mama said...yes"
That's something we see a lot in the fill in the blank talking. Janey gives the answer she WISHES would have been the answer.
"Janey wishes that Mama had said yes. But really, Mama said...NO!"
My no responses are always told by her as being extremely loud and mean sounding!
"When Mama said no, that made Janey very....angry. Janey was so angry that she...hit Mama"
Another example there of the answer being what, I think, Janey WANTED to do!
"No, Janey didn't hit Mama, and Mama was very proud Janey remembered not to hit. Instead, Janey....(here I opened up my mouth very wide to give her a hint)...screamed....very, very...loudly!"
"And then Mama said if Janey could calm down a little, when Daddy got home in a minute, he would take Janey for a...car ride. That made Janey feel....happy. And Mama was happy because Janey was being such a good girl"
There she surprised me a bit. I was going for "Janey calmed down". I try not to use terms like "good girl" too much, but I guess I must, as that's what she said!
Today is a snow day. Tony is home as well as Janey. First thing in the morning, Janey was ready once again for a car ride. We did a little fill in the black talking after we told her no to that.
"Janey wanted to go for a car ride, but Daddy said...YES!"
Again, the answer she wished for!
"No, actually Daddy said no. He said no because outside there is lots of....snow"
We were surprised by that. We had mentioned the snow, but we weren't sure Janey had made the connection. It was so good to know she had, that she understood there was a reason for no car ride.
"Yes, there's lots of snow outside. And if we drive in the snow, the car might...go smasha-la-rasha!"
It's possible I've used the term "smasha-la-rasha"....
A third great round. Janey was at loose ends a bit ago, not happy at all.
"You know, Janey, today things seems a little different, and that can be scary. Things seem different today because there is no...school"
That was a great one. I hadn't been talking about how this was a snow day---I just wanted to see if she realized that it was a day that would usually be a school day and it wasn't. I've known for a while that Janey has a very good idea of what each day is supposed to bring, and she really doesn't like days off in the middle of the week, but this was the first time I've been able to kind of prove it to myself.
After we have a conversation like those above, I've noticed that Janey gets very, very happy. After that first conversation about the shower and car ride, Janey gave me a huge hug, and then that look, the look I love so much, the connected and contented look. It's a look I only get once in a while, a look that is hard to explain but that I think a lot of you out there know. It's the look of minds meeting, of a connection without barriers.
It's wonderful to hear what Janey has to say. And the fill in the blank method seems to work better than almost anything we've tried to really get to hear her own opinions. I think it's because her main speech problem has always been word retrieval. She knows so much, but getting it out is so hard for her, as is forming sentences. If we take away a lot of the variables and work, if we make it so all she has to retrieve is one word or phrase, not a whole sentence, it seems to free her up to say what she wants to say. And I love, love, LOVE knowing what she wants to say.
Here's a recent conversation with Janey, with her words in italics. The background is that she wanted a shower just before I knew Tony was about to come home and give her a car ride, something she'd want even more.
"A little bit ago, Janey wanted to take a...shower. But Mama said...yes"That's something we see a lot in the fill in the blank talking. Janey gives the answer she WISHES would have been the answer.
"Janey wishes that Mama had said yes. But really, Mama said...NO!"
My no responses are always told by her as being extremely loud and mean sounding!
"When Mama said no, that made Janey very....angry. Janey was so angry that she...hit Mama"
Another example there of the answer being what, I think, Janey WANTED to do!
"No, Janey didn't hit Mama, and Mama was very proud Janey remembered not to hit. Instead, Janey....(here I opened up my mouth very wide to give her a hint)...screamed....very, very...loudly!"
"And then Mama said if Janey could calm down a little, when Daddy got home in a minute, he would take Janey for a...car ride. That made Janey feel....happy. And Mama was happy because Janey was being such a good girl"
There she surprised me a bit. I was going for "Janey calmed down". I try not to use terms like "good girl" too much, but I guess I must, as that's what she said!
Today is a snow day. Tony is home as well as Janey. First thing in the morning, Janey was ready once again for a car ride. We did a little fill in the black talking after we told her no to that.
"Janey wanted to go for a car ride, but Daddy said...YES!"
Again, the answer she wished for!
"No, actually Daddy said no. He said no because outside there is lots of....snow"
We were surprised by that. We had mentioned the snow, but we weren't sure Janey had made the connection. It was so good to know she had, that she understood there was a reason for no car ride.
"Yes, there's lots of snow outside. And if we drive in the snow, the car might...go smasha-la-rasha!"
It's possible I've used the term "smasha-la-rasha"....
A third great round. Janey was at loose ends a bit ago, not happy at all.
"You know, Janey, today things seems a little different, and that can be scary. Things seem different today because there is no...school"
That was a great one. I hadn't been talking about how this was a snow day---I just wanted to see if she realized that it was a day that would usually be a school day and it wasn't. I've known for a while that Janey has a very good idea of what each day is supposed to bring, and she really doesn't like days off in the middle of the week, but this was the first time I've been able to kind of prove it to myself.
After we have a conversation like those above, I've noticed that Janey gets very, very happy. After that first conversation about the shower and car ride, Janey gave me a huge hug, and then that look, the look I love so much, the connected and contented look. It's a look I only get once in a while, a look that is hard to explain but that I think a lot of you out there know. It's the look of minds meeting, of a connection without barriers.
It's wonderful to hear what Janey has to say. And the fill in the blank method seems to work better than almost anything we've tried to really get to hear her own opinions. I think it's because her main speech problem has always been word retrieval. She knows so much, but getting it out is so hard for her, as is forming sentences. If we take away a lot of the variables and work, if we make it so all she has to retrieve is one word or phrase, not a whole sentence, it seems to free her up to say what she wants to say. And I love, love, LOVE knowing what she wants to say.
Monday, March 5, 2018
The Family Motto
When the boys were young, before Janey was born, I read a parenting book that talked about the importance of having a family motto, a family mission statement. I wasn't really sold, especially because most of the examples given in the book were of families developing a motto that spoke to how important high academic achievement, or charitable giving, or constantly striving for excellence were, and unless most kids the ages of mine were far more forward looking than my boys, I didn't buy it. But out of curiosity, I asked Tony what he would pick for a family motto, and he said "Enjoy Life!"
I've thought often that really is pretty much our family motto. Of course, there needs to be a background of The Golden Rule type thinking, because if enjoying yourself involves hitting each other or petty crime, that isn't what we are going for. And I hope we taught the kids basic respect---for us as parents, for teachers and friends and themselves. But when it comes down to it, life is pretty short, and if you aren't enjoying yourself at least a good deal of the time, something probably needs to change.
What's making me think of this motto lately is a few essays or posts I read by autism parents lately. (and here I should include a thank you to the amazing mother of Sophie, who has a Facebook page I greatly recommend, "On the Train With Sophie", as I don't do a lot of reading about autism online, and I wouldn't have read the posts unless she had referred to them on her page). One was a video post by a mother talking about the sadness she felt over realizing her son, basically, wasn't ever going to be typical. The other was about going to see Elmo on stage, how a mother had to force her son to go and endure the stares of those around her.
I won't put down the mothers involved, or judge them. It's a long journey with all mothers of autistic children, and we all aren't going to agree or feel the same as each other at every point.
However, I realized that the motto we made up in a laughing moment years ago has actually helped a good deal with how we view Janey and how we make decisions about and for her.
I've despaired often as I've gone through life with Janey (and life in general, of course) but I don't think I've ever felt despair specifically that she was not ever going to be typical. Most of the despair I've felt is that she wasn't happy, and that I wasn't happy, all of us weren't happy, because we couldn't find a way to help her be happy. The fact that she will never go to college, or have a job, or live on her own---I wish she could do those things, because they can be sources of happiness, but they certainly aren't the only route in life to happiness. More than I'd have guessed, the academic and vocational limitations that Janey has don't really upset me at all. And that ties back to the family motto. You can certainly enjoy life without college, or a job, or your own home. Sometimes those very things bring a lot of UNhappiness.
There isn't any one right way to be happy. The mother knowing that if somehow she could get her child to go see Elmo, he would like it---well, maybe, but the pain to get there? There are a lot of things in life Janey might enjoy if we worked hard at getting her there, but is it necessary? There's a lot she enjoys hugely that she can do right now. Happiness doesn't need to be mainstream. Janey loves to ride aimlessly in the car listening to music. She loves to watch certain episodes of TV shows time and again. She loves to have her father cook for her. She loves to "steal" our coffee on weekends. She loves to take showers. She loves to eat chips in the driveway while the stray cats try to get some. She loves to dance with her brothers. So---maybe she'd love Disneyworld, for example. But first we'd have to get her on a plane, we'd have to get her used to long lines, we'd have to keep her contented somehow while we waited for the special moments she might really enjoy. Is it worth it?
Of course, there is more to life than enjoyment. But as a goal, as a motto, I think it works well, perhaps especially for Janey. There is so much of life that is hard for her, just by being someone living a bit less typical a life than most. So why not aim for as much of her life to be happy as we can? Why despair over what she isn't going to do, when we can instead try to make what she CAN do enjoyable for her?
I've thought often that really is pretty much our family motto. Of course, there needs to be a background of The Golden Rule type thinking, because if enjoying yourself involves hitting each other or petty crime, that isn't what we are going for. And I hope we taught the kids basic respect---for us as parents, for teachers and friends and themselves. But when it comes down to it, life is pretty short, and if you aren't enjoying yourself at least a good deal of the time, something probably needs to change.What's making me think of this motto lately is a few essays or posts I read by autism parents lately. (and here I should include a thank you to the amazing mother of Sophie, who has a Facebook page I greatly recommend, "On the Train With Sophie", as I don't do a lot of reading about autism online, and I wouldn't have read the posts unless she had referred to them on her page). One was a video post by a mother talking about the sadness she felt over realizing her son, basically, wasn't ever going to be typical. The other was about going to see Elmo on stage, how a mother had to force her son to go and endure the stares of those around her.
I won't put down the mothers involved, or judge them. It's a long journey with all mothers of autistic children, and we all aren't going to agree or feel the same as each other at every point.
However, I realized that the motto we made up in a laughing moment years ago has actually helped a good deal with how we view Janey and how we make decisions about and for her.
I've despaired often as I've gone through life with Janey (and life in general, of course) but I don't think I've ever felt despair specifically that she was not ever going to be typical. Most of the despair I've felt is that she wasn't happy, and that I wasn't happy, all of us weren't happy, because we couldn't find a way to help her be happy. The fact that she will never go to college, or have a job, or live on her own---I wish she could do those things, because they can be sources of happiness, but they certainly aren't the only route in life to happiness. More than I'd have guessed, the academic and vocational limitations that Janey has don't really upset me at all. And that ties back to the family motto. You can certainly enjoy life without college, or a job, or your own home. Sometimes those very things bring a lot of UNhappiness.
There isn't any one right way to be happy. The mother knowing that if somehow she could get her child to go see Elmo, he would like it---well, maybe, but the pain to get there? There are a lot of things in life Janey might enjoy if we worked hard at getting her there, but is it necessary? There's a lot she enjoys hugely that she can do right now. Happiness doesn't need to be mainstream. Janey loves to ride aimlessly in the car listening to music. She loves to watch certain episodes of TV shows time and again. She loves to have her father cook for her. She loves to "steal" our coffee on weekends. She loves to take showers. She loves to eat chips in the driveway while the stray cats try to get some. She loves to dance with her brothers. So---maybe she'd love Disneyworld, for example. But first we'd have to get her on a plane, we'd have to get her used to long lines, we'd have to keep her contented somehow while we waited for the special moments she might really enjoy. Is it worth it?
Of course, there is more to life than enjoyment. But as a goal, as a motto, I think it works well, perhaps especially for Janey. There is so much of life that is hard for her, just by being someone living a bit less typical a life than most. So why not aim for as much of her life to be happy as we can? Why despair over what she isn't going to do, when we can instead try to make what she CAN do enjoyable for her?
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