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 21 and severely autistic
Showing posts with label rude people. Show all posts
Showing posts with label rude people. Show all posts
Saturday, March 24, 2018
Wednesday, March 25, 2015
A thankfully rare memory of rude people!
Janey's brother Freddy has been attending an after-school support group for siblings of children with special needs, run by a fellow student. I am so happy he's getting a chance to talk with other kids who truly understand what life is like for families like ours. The leader of the group asked him to write about a memory that stood out from his childhood involving Janey. He wrote about a time I remember vividly. Here's what he wrote...
Going out to public places has always been one of the most difficult things to do with my younger sister. When she was around 6 and I was 13, we went to a fast food place simply because my sister doesn't do well with long waits. My sister was just being herself, quoting the TV shows she likes, repeating nursery rhymes, and occasionally joyful outbursts. She wasn't bothering anyone, or so we thought. At the table next to us, there was a family of people from another part of the country with two children, a boy and a girl, under 10. I'll never forget the way they looked at my sister. They stared at her and exchanged whispers, as if she were some sort of alien. Instantly, I felt extreme hatred towards them. Jane is my sister, how dare they even look at her like that. Of course, they may have just never seen an autistic child before, and they were "interested" or something, but I couldn't take it. I had to get us out of there, because I couldn't take another minute of their stares. When we got into the car, my brother and mother felt the exact same way I did. We had just as much right to eat at that place as they did, and they were staring at us like our hair was on fire.
Don't get me wrong, this didn't stop us from eating out. Luckily, most people in Boston are quite tolerant of special needs children, but I have no tolerance for those who don't.
I remember so much about that awful meal. The family was talking loudly at first, before they noticed Janey, and we heard all about how they were vacationing here. Janey was being so good, I was thinking at the time. She was sitting nicely, eating, and talking away. We loved then and love now when she gets into one of her fairly rare talkative moods. As Freddy said, she was quoting all kinds of shows, singing a bit and perhaps now and then making a happy noise. The family suddenly got very quiet. They all started staring at Janey. This wasn't any subtle stare. It was an all-out stare, like, as Freddy said, they were watching an alien being. Then they started the whispering---taking a look at her, whispering to each other and then taking another long look.
What upset me most was that the adults (what looked like a mother and grandmother) were fully involved in this staring and whispering, just as much so if not more so than the kids. I remembering hoping against hope that the boys were not noticing what was going on. However, before we finished eating, they both asked to go. I was happy to. We gathered up our food and went to the car, Janey happily holding our hands. For once, I was very glad she was oblivious to all that was going on.
In the car, both boys burst out in anger. They were furious at the family. And I found myself completely unable to disagree.
What strikes me is how unusual this scene was. I've had people say something nasty to me about Janey maybe three times ever. I've had people notice her and look sad somehow. I've had people ignore her. But I don't really think I can ever, ever think of another incident of people staring and whispering. And that is good. Maybe Freddy is onto something. Maybe the greater Boston area is a good place to have a child like Janey. Bostonians are fairly tolerant. They are also generally not whisperers, I'd say! If they have something to say, they say it. Maybe this family felt it was more polite to stare and whisper than to smile at us, to let us know that they saw Janey was unusual and to talk to us about it.
I'm thinking in contrast of something that happened this weekend. Tony and I were at a Dunkin Donuts with Janey, and she ran away from us and went to a table where a man and woman were sitting. She reached for the woman's doughnut just as Tony grabbed her and stopped her. The woman gave us a big smile as Tony said he was sorry. She asked Janey her name, and Tony said Janey was autistic and wasn't much of a talker, and asked Janey to say her name, which she did. Later, when taking Janey to the bathroom, we passed them again, and they smiled and waved to Janey. That was a case where the people obviously realized Janey had special needs, but they acted in such a way that we left feeling happy and included. It takes so little to do that, and I must say, most people are great in that way.
Memory is funny. I am not sure why Freddy and I, and William too, so vividly remember that awful family. I wish memory saved instead the many, many times people have been kind to Janey, have delighted with us in her uniqueness. They are the people I want to have occupying my memory.
Going out to public places has always been one of the most difficult things to do with my younger sister. When she was around 6 and I was 13, we went to a fast food place simply because my sister doesn't do well with long waits. My sister was just being herself, quoting the TV shows she likes, repeating nursery rhymes, and occasionally joyful outbursts. She wasn't bothering anyone, or so we thought. At the table next to us, there was a family of people from another part of the country with two children, a boy and a girl, under 10. I'll never forget the way they looked at my sister. They stared at her and exchanged whispers, as if she were some sort of alien. Instantly, I felt extreme hatred towards them. Jane is my sister, how dare they even look at her like that. Of course, they may have just never seen an autistic child before, and they were "interested" or something, but I couldn't take it. I had to get us out of there, because I couldn't take another minute of their stares. When we got into the car, my brother and mother felt the exact same way I did. We had just as much right to eat at that place as they did, and they were staring at us like our hair was on fire.
Don't get me wrong, this didn't stop us from eating out. Luckily, most people in Boston are quite tolerant of special needs children, but I have no tolerance for those who don't.
I remember so much about that awful meal. The family was talking loudly at first, before they noticed Janey, and we heard all about how they were vacationing here. Janey was being so good, I was thinking at the time. She was sitting nicely, eating, and talking away. We loved then and love now when she gets into one of her fairly rare talkative moods. As Freddy said, she was quoting all kinds of shows, singing a bit and perhaps now and then making a happy noise. The family suddenly got very quiet. They all started staring at Janey. This wasn't any subtle stare. It was an all-out stare, like, as Freddy said, they were watching an alien being. Then they started the whispering---taking a look at her, whispering to each other and then taking another long look.
What upset me most was that the adults (what looked like a mother and grandmother) were fully involved in this staring and whispering, just as much so if not more so than the kids. I remembering hoping against hope that the boys were not noticing what was going on. However, before we finished eating, they both asked to go. I was happy to. We gathered up our food and went to the car, Janey happily holding our hands. For once, I was very glad she was oblivious to all that was going on.
In the car, both boys burst out in anger. They were furious at the family. And I found myself completely unable to disagree.
What strikes me is how unusual this scene was. I've had people say something nasty to me about Janey maybe three times ever. I've had people notice her and look sad somehow. I've had people ignore her. But I don't really think I can ever, ever think of another incident of people staring and whispering. And that is good. Maybe Freddy is onto something. Maybe the greater Boston area is a good place to have a child like Janey. Bostonians are fairly tolerant. They are also generally not whisperers, I'd say! If they have something to say, they say it. Maybe this family felt it was more polite to stare and whisper than to smile at us, to let us know that they saw Janey was unusual and to talk to us about it.
I'm thinking in contrast of something that happened this weekend. Tony and I were at a Dunkin Donuts with Janey, and she ran away from us and went to a table where a man and woman were sitting. She reached for the woman's doughnut just as Tony grabbed her and stopped her. The woman gave us a big smile as Tony said he was sorry. She asked Janey her name, and Tony said Janey was autistic and wasn't much of a talker, and asked Janey to say her name, which she did. Later, when taking Janey to the bathroom, we passed them again, and they smiled and waved to Janey. That was a case where the people obviously realized Janey had special needs, but they acted in such a way that we left feeling happy and included. It takes so little to do that, and I must say, most people are great in that way.
Memory is funny. I am not sure why Freddy and I, and William too, so vividly remember that awful family. I wish memory saved instead the many, many times people have been kind to Janey, have delighted with us in her uniqueness. They are the people I want to have occupying my memory.
Saturday, May 24, 2014
Talking back to "I don't know how you do it"
Over the years, the phrase "I don't know how you do it!" has come up over and over in autism writing as probably the phrase autism parents most dislike hearing. I admit at times it's bothered me a bit too, but lately, I've come to peace with it. It's struck me it's all in how you take hearing it, in what you hear when you hear it. What do I mean by that? Well...
Take it as a compliment When people say the phrase, reword it in your mind as "Wow---you handled that meltdown/screaming/tantrum/obsession/biting/what have you well!" Assume the speaker is truly awed by your ability to deftly navigate the waters of autism.
Take it as a question Think of it worded as "HOW do you do it? Imagine that the speaker is truly wondering how you cope. Use it as an opportunity for education. Fill them in on some strategies you use, what techniques work to calm your child, what respite type services have been helpful, what educational strategies have worked best. Turn them into an advocate by informing them what actually helps and works.
Take it as a confession I think a lot of parents feel, secretly, that if they had had a child with severe special needs, they simply wouldn't have been able to deal with it---that they would have done whatever people do when they simply can't take it. I often let people know that I felt that way too, before actually being faced with special needs parenting. We learn as we go. Despite lovely fables about parents being chosen from above to have a very special child, the truth is none of us are prepared for our special kids. It's a tough on the job training, but I tell people they too would have done just fine if they had been "chosen".
Take it as an offer of help This one can be fun. Say something like "You know, I don't know how I do it either. Thanks for noticing. Yes, I'd LOVE your help. When can you babysit?" Seriously, the phrase can be an opening to admit sometimes we CAN'T do it alone, and we can use any help we can get.
Take it as shock When people are faced with a situation they haven't seen before, one that seems overwhelming to them, they don't always know how to respond. I've most often heard the phrase after Janey has severely melted down, has pulled out all her tricks like ear-piercing screaming and arm biting. People just don't know what to say. I think the phrase often is almost involuntary---a reaction to seeing behavior they have never seen before.
Take it as better than the alternative What if people said instead "I could do that much better than you. I can certainly see how you do it, because it looks very easy. I don't know what the big deal with autism is. It's a piece of cake" I don't think most of us would like that much. In a way, hearing the phrase is a badge of honor. We are doing something tough, and we are being recognized for it.
Take it as a statement of love, for you and your child The truth is, most times I've heard "I don't know how you do it", it was coming from someone who cares about me. They might mean any of the meanings here, but they are saying it because they care. Sometimes it's not the words that really matter, but the thought behind them, and sometimes, as with our kids, we have to read more than plain words to know what is being said. Sometimes, we can answer without words too---just send back a shrug, a smile, a hug, a laugh.
None of us know how we do it. We are like cartoon characters that walk off a cliff. As long as we don't look down, we just keep going. We might be defying the laws of physics, but we are doing it, one way or another.
Take it as a compliment When people say the phrase, reword it in your mind as "Wow---you handled that meltdown/screaming/tantrum/obsession/biting/what have you well!" Assume the speaker is truly awed by your ability to deftly navigate the waters of autism.
Take it as a question Think of it worded as "HOW do you do it? Imagine that the speaker is truly wondering how you cope. Use it as an opportunity for education. Fill them in on some strategies you use, what techniques work to calm your child, what respite type services have been helpful, what educational strategies have worked best. Turn them into an advocate by informing them what actually helps and works.
Take it as a confession I think a lot of parents feel, secretly, that if they had had a child with severe special needs, they simply wouldn't have been able to deal with it---that they would have done whatever people do when they simply can't take it. I often let people know that I felt that way too, before actually being faced with special needs parenting. We learn as we go. Despite lovely fables about parents being chosen from above to have a very special child, the truth is none of us are prepared for our special kids. It's a tough on the job training, but I tell people they too would have done just fine if they had been "chosen".
Take it as an offer of help This one can be fun. Say something like "You know, I don't know how I do it either. Thanks for noticing. Yes, I'd LOVE your help. When can you babysit?" Seriously, the phrase can be an opening to admit sometimes we CAN'T do it alone, and we can use any help we can get.
Take it as shock When people are faced with a situation they haven't seen before, one that seems overwhelming to them, they don't always know how to respond. I've most often heard the phrase after Janey has severely melted down, has pulled out all her tricks like ear-piercing screaming and arm biting. People just don't know what to say. I think the phrase often is almost involuntary---a reaction to seeing behavior they have never seen before.
Take it as better than the alternative What if people said instead "I could do that much better than you. I can certainly see how you do it, because it looks very easy. I don't know what the big deal with autism is. It's a piece of cake" I don't think most of us would like that much. In a way, hearing the phrase is a badge of honor. We are doing something tough, and we are being recognized for it.
Take it as a statement of love, for you and your child The truth is, most times I've heard "I don't know how you do it", it was coming from someone who cares about me. They might mean any of the meanings here, but they are saying it because they care. Sometimes it's not the words that really matter, but the thought behind them, and sometimes, as with our kids, we have to read more than plain words to know what is being said. Sometimes, we can answer without words too---just send back a shrug, a smile, a hug, a laugh.
None of us know how we do it. We are like cartoon characters that walk off a cliff. As long as we don't look down, we just keep going. We might be defying the laws of physics, but we are doing it, one way or another.
Friday, July 12, 2013
Just Plain Old Awful
Here's a warning for you. Usually I try to be at least somewhat upbeat in what I write, or at least not totally downbeat, but this post is not going to be that way. I'm just going to take advantage of anyone reading this to rant a little about the second half of yesterday.
The first half of the day was fairly decent. Janey went to summertime school, I got some needed housework done while she was there, and took a nice little nap. I picked her up, and got a fairly halfway okay report (she had bitten herself a few times and freaked out a few times, but had good moments too---an aside here is that I bet for a lot of parents, that would be one of the worse reports of a school day they have ever gotten, but for me it was, well, not great but okay), got her home, managed to give her a shower and wash her hair, which she had not been wanting lately, got some dishes done although the hot water wasn't somehow coming out hot...nothing extremely wrong with that first half of the day.
Then, about an hour after her shower, I was starving. I hadn't eaten lunch yet, and it was about 3. Janey was on the couch playing with her iPad and pretty happy, so I went into the next room and quickly microwaved a frozen meal. I was heading out to eat it near her to keep an eye on her. She was walking toward me, and as often is the case, it took me a minute to register that her hands were completely covered with something like chocolate, that isn't chocolate, that is much worse than chocolate. I looked at the couch, and realized it was covered with said substance, the floor was scattered with it, and the iPad was complete fingerpainted with it. This kind of situation is truly a 2 or 3 person job, but there was only me in the house. I followed the routine I've worked out---grab her first, head to the bathroom, clean her up (which is easier said than done, and I'll spare you the details), go back to the scene of the crime, make her sit on the other couch and tell her in extremely firm tones to STAY THERE, and start the fun cleaning up. It took a long time. Thank goodness I had the foresight to buy the best iPad protector cover I could find. It's saved the poor iPad about 5 times now. Removing the cover and cleaning it was the last step in the ever-entertaining sequence. Needless to say, by that point my food was cold and I wasn't hungry any more anyway.
So, flash forward a bit. We need to pick up Freddy at his summer job, which is about a 45 minute drive away. Tony was home by then, and I decided Janey and I would ride along with him, as my exciting outing out of the house for the day. Janey usually enjoys a car ride, and the first leg of this one wasn't bad---she screamed the first half, but then calmed down (and I again had the thought---for many people, that first part of the car ride would have been the worse car ride of their life, but I've developed pretty low standards for what is okay) We picked up Freddy, and then we were idiots. We were all starving (I still hadn't eaten) and right next to his work is an Old Country Buffet---the one restaurant we sometimes attempt with Janey. We decided to go. Well, this was an OCB we hadn't been to before, and I swear it was the most happening place I've ever been in my life. Picture a huge room completely filled with families, millions of little kids, long cafeteria style tables, balloons and cotton candy and excitment all over. I guess they have some kind of special summer night deal for kids, and boy, did the local crowd take advantage of it. It was a loud and rocking place. So did we do the sensible thing and realize it just wouldn't work for Janey? No, we did not. We went on in to eat. You can pretty much write the rest yourself. It might have been okay, if there had been any french fries, but for some reason, there wasn't. That set Janey off. She started to scream. And the whole place, apparently eager for some dinner entertainment, stared at her. Adults, kids, waitstaff, the whole crew. They all stared. I am not overstating this. I was in the center of a huge room of staring, judging eyes. We stayed as cool as we could. I led a screaming Janey up to the buffet, found her some chips and salsa, and got her back to the table. For a little while, she ate some salsa and was a bit okay, but when she started to scream again, I gave up and took her out of the car, after having stuffed in a few bites of I don't even remember what. Tony and Freddy ate for a bit more, and then we were off for the ride home.
The ride home---oh, yes. It was hell. Janey screamed the whole way, with intensity. We were trying to hear about Freddy's day, to regroup after the dinner, to just get home, and she screamed. And bit herself. And at one point, bit Freddy, although he managed to not get much hurt. And flung herself around. I tried my damnest to talk to her in calming tones, to sing to her, to do whatever you can do in a car to comfort a child who is completely totally freaked out. It was one of the worst 45 minutes I've ever had. I was never happier to get home, and Janey had worn herself out to the extent she collapsed and slept.
Normally I'd try now to sum this up and put some kind of spin on it, to figure out what I'd done wrong, to see the day from Janey's perspective, to learn from it, to not just be completely negative. But for just this once, I'm not going to. I'm just going to close here, with all I can really think of to think---I hope today is better.
The first half of the day was fairly decent. Janey went to summertime school, I got some needed housework done while she was there, and took a nice little nap. I picked her up, and got a fairly halfway okay report (she had bitten herself a few times and freaked out a few times, but had good moments too---an aside here is that I bet for a lot of parents, that would be one of the worse reports of a school day they have ever gotten, but for me it was, well, not great but okay), got her home, managed to give her a shower and wash her hair, which she had not been wanting lately, got some dishes done although the hot water wasn't somehow coming out hot...nothing extremely wrong with that first half of the day.
Then, about an hour after her shower, I was starving. I hadn't eaten lunch yet, and it was about 3. Janey was on the couch playing with her iPad and pretty happy, so I went into the next room and quickly microwaved a frozen meal. I was heading out to eat it near her to keep an eye on her. She was walking toward me, and as often is the case, it took me a minute to register that her hands were completely covered with something like chocolate, that isn't chocolate, that is much worse than chocolate. I looked at the couch, and realized it was covered with said substance, the floor was scattered with it, and the iPad was complete fingerpainted with it. This kind of situation is truly a 2 or 3 person job, but there was only me in the house. I followed the routine I've worked out---grab her first, head to the bathroom, clean her up (which is easier said than done, and I'll spare you the details), go back to the scene of the crime, make her sit on the other couch and tell her in extremely firm tones to STAY THERE, and start the fun cleaning up. It took a long time. Thank goodness I had the foresight to buy the best iPad protector cover I could find. It's saved the poor iPad about 5 times now. Removing the cover and cleaning it was the last step in the ever-entertaining sequence. Needless to say, by that point my food was cold and I wasn't hungry any more anyway.
So, flash forward a bit. We need to pick up Freddy at his summer job, which is about a 45 minute drive away. Tony was home by then, and I decided Janey and I would ride along with him, as my exciting outing out of the house for the day. Janey usually enjoys a car ride, and the first leg of this one wasn't bad---she screamed the first half, but then calmed down (and I again had the thought---for many people, that first part of the car ride would have been the worse car ride of their life, but I've developed pretty low standards for what is okay) We picked up Freddy, and then we were idiots. We were all starving (I still hadn't eaten) and right next to his work is an Old Country Buffet---the one restaurant we sometimes attempt with Janey. We decided to go. Well, this was an OCB we hadn't been to before, and I swear it was the most happening place I've ever been in my life. Picture a huge room completely filled with families, millions of little kids, long cafeteria style tables, balloons and cotton candy and excitment all over. I guess they have some kind of special summer night deal for kids, and boy, did the local crowd take advantage of it. It was a loud and rocking place. So did we do the sensible thing and realize it just wouldn't work for Janey? No, we did not. We went on in to eat. You can pretty much write the rest yourself. It might have been okay, if there had been any french fries, but for some reason, there wasn't. That set Janey off. She started to scream. And the whole place, apparently eager for some dinner entertainment, stared at her. Adults, kids, waitstaff, the whole crew. They all stared. I am not overstating this. I was in the center of a huge room of staring, judging eyes. We stayed as cool as we could. I led a screaming Janey up to the buffet, found her some chips and salsa, and got her back to the table. For a little while, she ate some salsa and was a bit okay, but when she started to scream again, I gave up and took her out of the car, after having stuffed in a few bites of I don't even remember what. Tony and Freddy ate for a bit more, and then we were off for the ride home.
The ride home---oh, yes. It was hell. Janey screamed the whole way, with intensity. We were trying to hear about Freddy's day, to regroup after the dinner, to just get home, and she screamed. And bit herself. And at one point, bit Freddy, although he managed to not get much hurt. And flung herself around. I tried my damnest to talk to her in calming tones, to sing to her, to do whatever you can do in a car to comfort a child who is completely totally freaked out. It was one of the worst 45 minutes I've ever had. I was never happier to get home, and Janey had worn herself out to the extent she collapsed and slept.
Normally I'd try now to sum this up and put some kind of spin on it, to figure out what I'd done wrong, to see the day from Janey's perspective, to learn from it, to not just be completely negative. But for just this once, I'm not going to. I'm just going to close here, with all I can really think of to think---I hope today is better.
Sunday, April 28, 2013
Being Tough---my own way
First, I want to thank everyone who reads this blog. You guys keep me going. I wish I could know you all in real life. Maybe someday, I'll travel around and try to meet every last one of you. In the meantime, it's great to hear from you here, have you as friends on Facebook or just know you are out there someplace!
Last week I was hit with a huge amount of self-doubt. There were lots of reasons, some I'm not going to get into just yet, but I was feeling hugely down on myself. But today, thanks to thinking about things a new way with the help of all of you, I'm feeling much better.
I'm never going to be tough in some ways. You will not see me organizing fundraisers, or hiring top advocates to come with me to IEP meetings, or educating everyone that looks at Janey with a hint of anything but total support. I am thankful there are people that can do those things. If there weren't, we'd be back in the bad old days, and Janey would not even get an education.
But I am tough in other ways. I can't tell you how many times I've had a morning that for many, for most outside the wonderful world of Holland trips, would be the roughest morning they've ever had, and still, I somehow got Janey dressed and ready for school, and drove her there. I don't know how many nights from hell I've had, where Janey barely slept, screamed or laughed all night, was possessed by whatever possesses her, and still, I got up the next day and went about my life. I've stood strong while Janey lashed out at me with hitting or biting, and responded with hugs and comfort. I've continued to shop while Janey screamed in a way most people have never heard a child scream, all the while holding her hand and whispering words of encouragement. I'm not looking for rewards for this, but I'm realizing it's something to be proud of.
Many times, I've felt guilty because I don't go to more school meetings, I don't go to autism rallies, I don't go to the statehouse to advocate for autism. I feel I don't do enough for the greater autism world. But this morning, a song came into my head. I'm not very religious, but I love religious music. It's my form of faith, I guess. Going to Sunday School growing up in rural Maine, there was a children's hymn we sang every Sunday. Here are the lyrics...
Jesus bids us shine with a clear, pure light
Like a little candle, burning in the night
In this world of darkness, we must shine
You in your small corner and I in mine!
I've always loved that hymn. I picture a huge, dark room, and me in one of the corners, burning a small candle to fight the big darkness. I can't light up the whole room, but I can light up my corner. And that is what I am trying to do with this blog. I can light my little corner. I can write honestly and truthfully and in a heartfelt way. That is something I am able to do, and it's my way of lighting my small corner. It's my way of being tough, but true to myself. And I'll keep doing it.
Last week I was hit with a huge amount of self-doubt. There were lots of reasons, some I'm not going to get into just yet, but I was feeling hugely down on myself. But today, thanks to thinking about things a new way with the help of all of you, I'm feeling much better.
I'm never going to be tough in some ways. You will not see me organizing fundraisers, or hiring top advocates to come with me to IEP meetings, or educating everyone that looks at Janey with a hint of anything but total support. I am thankful there are people that can do those things. If there weren't, we'd be back in the bad old days, and Janey would not even get an education.
But I am tough in other ways. I can't tell you how many times I've had a morning that for many, for most outside the wonderful world of Holland trips, would be the roughest morning they've ever had, and still, I somehow got Janey dressed and ready for school, and drove her there. I don't know how many nights from hell I've had, where Janey barely slept, screamed or laughed all night, was possessed by whatever possesses her, and still, I got up the next day and went about my life. I've stood strong while Janey lashed out at me with hitting or biting, and responded with hugs and comfort. I've continued to shop while Janey screamed in a way most people have never heard a child scream, all the while holding her hand and whispering words of encouragement. I'm not looking for rewards for this, but I'm realizing it's something to be proud of.
Many times, I've felt guilty because I don't go to more school meetings, I don't go to autism rallies, I don't go to the statehouse to advocate for autism. I feel I don't do enough for the greater autism world. But this morning, a song came into my head. I'm not very religious, but I love religious music. It's my form of faith, I guess. Going to Sunday School growing up in rural Maine, there was a children's hymn we sang every Sunday. Here are the lyrics...
Jesus bids us shine with a clear, pure light
Like a little candle, burning in the night
In this world of darkness, we must shine
You in your small corner and I in mine!
I've always loved that hymn. I picture a huge, dark room, and me in one of the corners, burning a small candle to fight the big darkness. I can't light up the whole room, but I can light up my corner. And that is what I am trying to do with this blog. I can light my little corner. I can write honestly and truthfully and in a heartfelt way. That is something I am able to do, and it's my way of lighting my small corner. It's my way of being tough, but true to myself. And I'll keep doing it.
Saturday, March 16, 2013
Autism in public places
This article ( link ) is getting a lot of buzz today. It talks about a huge issue in autism---how do we balance our childrens' rights to be out in public with the rights of those they might be somehow disturbing?
My feeling is that common courtesy on both sides goes a long way. I would not take Janey to a quiet restaurant or movie, because she would not be quiet. If I were paying for a movie or fancy dinner, which in these days is a financial stretch for many of us, I would not want to be unable to enjoy myself because of noise. That includes of course other types of noisy people, like those who talk during movies or those who get drunk and disorderly in restaurants. However, if a place is public and has a built in noise level, or if it's a place Janey needs to be and has every right to be, I expect others to be understanding of her.
I have burned into my mind for all eternity two times that Janey was in a place she had every right to be and she and I were treated rudely. One was on a commuter rail ( here's that blog entry ) and one was in a doctor's office she had an appointment at ( read about that here ). Both incidents still make me cry to think about them. They were, to me, clearcut examples of how people should not react to someone with autism, someone with differences.
However, there are many, many times Janey has been treated with kindness and understanding. As she gets older, people are more able to see she is different, and they see that we are all trying hard. Tony takes Janey to stores a lot, and at the stores where she is a regular, she is treated like a star, almost. She usually gets a lollipop at the register, and she gets a lot of smiles.
Most of the world, though, is in-between. There are so many times that I am made upset not by outright rudeness, but by staring, or disapproving looks. The ultimate example of that happening is in this post ( link ). I am not a person who is going to put Janey out there into situations to prove a point. Nothing in this world makes me more uneasy than being the center of attention or being singled out. But short of keeping Janey home at all times, it's impossible not to get into such situations. Janey makes odd noises. She cries sometimes. She jumps around. She talks oddly and repeats phrases. If that bothers people, then I do have a problem with that. None of those actions of hers hurts others. None of them are illegal, or keep others from doing what they need to do. I am not going to hide her because she might make someone uncomfortable.
The article that got me thinking gave a great example of a case where I would draw the line, where I would remove Janey from the situation. It told of a man with autism that would eat food right out of the hot food bar at Whole Foods. That is a health and safety issue, and a rudeness issue. If Janey starts to do something like that, I firmly tell her no, and if she continues, we leave. I don't expect exceptions to the rules for Janey. She needs to learn what she CAN learn, so that she CAN be out in public. But her just being autistic, without doing anything unhealthy or illegal or wrong, is not grounds for her not being welcome in public.
In a perfect world, everyone would be striving to be as kind and fair and understanding as they could. That's not this world. I need to be strong enough to stand up to the jerks out there, and also understanding enough to find that balance between Janey's rights and the rights of others. It's not easy, but then again, not much about this autism parenting gig is.
My feeling is that common courtesy on both sides goes a long way. I would not take Janey to a quiet restaurant or movie, because she would not be quiet. If I were paying for a movie or fancy dinner, which in these days is a financial stretch for many of us, I would not want to be unable to enjoy myself because of noise. That includes of course other types of noisy people, like those who talk during movies or those who get drunk and disorderly in restaurants. However, if a place is public and has a built in noise level, or if it's a place Janey needs to be and has every right to be, I expect others to be understanding of her.
I have burned into my mind for all eternity two times that Janey was in a place she had every right to be and she and I were treated rudely. One was on a commuter rail ( here's that blog entry ) and one was in a doctor's office she had an appointment at ( read about that here ). Both incidents still make me cry to think about them. They were, to me, clearcut examples of how people should not react to someone with autism, someone with differences.
However, there are many, many times Janey has been treated with kindness and understanding. As she gets older, people are more able to see she is different, and they see that we are all trying hard. Tony takes Janey to stores a lot, and at the stores where she is a regular, she is treated like a star, almost. She usually gets a lollipop at the register, and she gets a lot of smiles.
Most of the world, though, is in-between. There are so many times that I am made upset not by outright rudeness, but by staring, or disapproving looks. The ultimate example of that happening is in this post ( link ). I am not a person who is going to put Janey out there into situations to prove a point. Nothing in this world makes me more uneasy than being the center of attention or being singled out. But short of keeping Janey home at all times, it's impossible not to get into such situations. Janey makes odd noises. She cries sometimes. She jumps around. She talks oddly and repeats phrases. If that bothers people, then I do have a problem with that. None of those actions of hers hurts others. None of them are illegal, or keep others from doing what they need to do. I am not going to hide her because she might make someone uncomfortable.
The article that got me thinking gave a great example of a case where I would draw the line, where I would remove Janey from the situation. It told of a man with autism that would eat food right out of the hot food bar at Whole Foods. That is a health and safety issue, and a rudeness issue. If Janey starts to do something like that, I firmly tell her no, and if she continues, we leave. I don't expect exceptions to the rules for Janey. She needs to learn what she CAN learn, so that she CAN be out in public. But her just being autistic, without doing anything unhealthy or illegal or wrong, is not grounds for her not being welcome in public.
In a perfect world, everyone would be striving to be as kind and fair and understanding as they could. That's not this world. I need to be strong enough to stand up to the jerks out there, and also understanding enough to find that balance between Janey's rights and the rights of others. It's not easy, but then again, not much about this autism parenting gig is.
Friday, August 17, 2012
Shopping Hell
Janey has had a tough last few days, including her birthday. There's been periods of time each of the days where she has been crying non-stop, like in the bad old days. I mean completely non-stop hysterical crying, for hours and hours and hours. There are have been periods each day where she was fairly happy, but the crying has been big parts of the days, and it's been awful. She doesn't like to feel that way, and I know she doesn't know why she is crying. She does pathetically sad things to try to comfort herself, like telling herself to take a deep breath, or humming lullabies to herself. It breaks my heart. Today Tony took William to visit colleges, and I decided to do absolutely nothing but try to keep Janey happy and active, and to do whatever she wanted, sort of a second birthday that was just hers (she shares her real one with Freddy). It worked pretty much until 3pm, which has become the Hour of Evil where she starts to lose it every day. I took her to the splash park in the morning, to McDonalds for lunch, we snuggled a lot, I played with her, watched Yo Gabba Gabba with her a lot---and I was hoping it would all break the crying trend. I took her at 3 to Sears to ride the escalator there, the closest one to us. She had been asking and asking for that. Something about the store set her off badly. At the top of the escalator, she started screaming, crying so loudly that literally the whole big store was looking at us. I grabbed a dress I had been wanting to get her, on a huge sale, and ran to the register. Dumb move. As we waited less than 2 minutes for a cashier (you get quick service with a screamer, they opened a new register), the woman behind me in line felt the need to tell me that Janey needed to go home, and then started loudly saying "SHHHH" to her. I felt like punching her, or at least explaining to her we had been in the store literally 3 minutes at that point. But concentrated on just getting out. Then the cashier felt the need to roll her eyes to another cashier and sigh loudly as she waited on us. At that point, I lost it. I am not a yeller. I do anything to avoid seeming rude or being confrontational. But I couldn't stop myself. When I am REALLY upset, something takes over. I said in a very loud voice (maybe yelling) to the cashier "She is autistic. I am shopping as quickly as humanly possible. She needs school clothes just like anyone else, and I do not have any babysitters. Therefore, I must bring her with me. I'm sorry she is bothering you" The cashier, taken aback I am sure, said nothing but a sarcastic "Have a nice day!" as we left, with the eyes of every person in the store on us. If you know me in person, you know this was my nightmare. Literally, one of the worst moments of my life. And you know that when I got to the car, I started doubting myself. Why did I take Janey to the store? Why did I try to buy anything? And then, still mad, I started answering myself. What else am I supposed to do? What I said to the lady was true. Should I just keep Janey at home at all times, to avoid bothering anyone? Isn't that what people used to want people with kids in wheelchairs or kids with Down Syndrome to do? Why doesn't Janey have a right to be in public? Of course her crying is tough. But you would think that people would realize I am doing everything I can to minimize their exposure to it. That sometimes, I have to try anything, and I thought the escalator shopping might work. That there are many kinds of people in this world, and although Janey is loud when she is crying, she isn't a spoiled brat or a mean kid. She is autistic.
Well....that was a long rant. Obviously I'm tired and upset. I know these weeks without school are tough for Janey as well as me. In fact, the day before her birthday, when I asked her to guess what the next day was, trying to hype her up, she said "A school day?" very hopefully. So we will make it through, someone. But I won't forget today anytime soon.
Monday, June 18, 2012
Not letting a jerk ruin a great day
I took Janey to the aquarium today. I would never have had the courage to do so without my friend Maryellen. Janey loves her (and so do I!) and with her help, we had a great day. Janey liked the aquarium a lot! I had a feeling if she would like any museum type place, that would be it, as she loves to look at fish, and has been very, very taken with a Teletubbies segment about feeding penguins. But I've guessed wrong many times in the past. Luckily, I was right this time. Janey loved seeing the penguins, and spent a long, long time at several fish tanks. She was good walking to and from the aquarium, and even good waiting an hour for our train at the station. I was on a high---so happy that I was able to do something that "normal" with her and have it go well.
Then the train ride home. Janey was still happy, but starting to cross over into manic a little. It had been a long day. She was repeating things she heard Maryellen and I say. She got caught up in saying "Don't say THAT!" and then laughing in a fake and loud way, over and over. We were working on calming her down, but she wasn't hugely loud, I didn't think. However, a man about 4 rows ahead of us (on a crowded train, which was in no way quiet otherwise), turned around and said "Could you just keep it quiet back there, please?" in an annoyed and superior way. Maryellen immediately said "She is autistic" and I said "We are doing the best we can". The man said no more, but for me, the damage was done. I wanted to cry my eyes out, and alternatively wanted to go scream at the guy, to let him know how his words had pierced me. I know I shouldn't have let it bother me. He was a jerk, he was somehow annoyed by Janey's tone or pitch or who knows what. He had no idea how hard it is for me to get up the gumption to take her out like that, and how easily someone like him can make it a thousand times harder.
Now we are home, and Janey has lost it---she is screaming, hysterical, out of her wits. I am letting her cry a little, as I think she needs it after holding it in all day. She was probably overstimulated, but I have to count the day as a success.
And I am lucky---lucky that I have rarely had someone be that openly nasty. I can't let my own demons keep me from giving Janey experiences like a trip to the city. I don't want to be the center of attention. I don't want to be seen in a negative light. But I'm not Janey, and she had no idea what happened. She hopefully will remember today as it should be remembered---a great day.
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