Kind People

I am not sure why it is, but lately, I have found people are being extremely kind to Janey, and to us when we are with her.  It's not that people were ever usually mean, but this is a new level of kind, a heartwarming going out of their way type of kind.  It might be that people are more aware overall of autism, and so know what is going on with Janey.  It also might be that as she gets close to an adult size and height, it's completely obvious she has fairly severe special needs.  People who might have in the past thought she was just a kid acting out or being silly now can see very quickly that's not the case.  Whatever it is, I'm glad of it, and last night was a wonderful example of what I've been seeing.

We had to take Janey for a special x-ray to see if she has scoliosis.  She has a little bend at the shoulders, and has for a while.  I hope very much she doesn't have it, and it's just something from growing fast and from having abdominal surgery, but we need to have it checked out.  We had put off getting the x-ray for a while, because Janey has developed a huge fear of medical facilities.  After her tough (but good) checkup recently, we had to go back to the same building to pick up new glasses for me, and Janey, as soon as she saw where we were, started screaming hysterically.  We had to reassure her she didn't even  have to get out of the car, but she didn't totally relax until we were long gone form the place.

Last night we were at a different clinic, but Janey knew it was a medical place.  She was very, very upset.  In the waiting area for x-rays, there was just one other mother and child, but the wait was very long.  We had been there half an hour without seeing anyone come out to get people.  Janey had been screaming almost the whole time, lashing out, trying to grab my soda and throw it around, asking over and over and over to go for a ride in the car---it was very tough.  Finally, the technician came out, and I saw why it was taking so long.  I am not exaggerating when I say he looked to be about 95 years old.  I've never seen an older looking person still working.  I am glad he can still work, and I bet he's good at what he does, but he was VERY slow.  It took him a long time just to walk out into the waiting area.  I was dreading how long it would take him to help the mother and son there before us.

Then, the mother did something incredibly nice.  She went up to him and said "Please take that girl named Jane in first.  We can wait"  I almost instantly started crying, from the sheer kindness and thoughtfulness of her gesture.  I thanked her over and over.  She shrugged it off, as I have noticed most truly kind people do, and said she had taught kids with special needs and understood what it was like.

It took the technician about half an hour to do the one x-ray Janey needed, which thankfully, she stood still for, so it didn't need to be redone.  As we went back out to the lobby, I asked Janey to say thank you to the kind mother, and she did.  We thanked her once again and left feeling positive after an experience that could have otherwise been a nightmare.

I hope very much Janey doesn't have scoliosis.  It will be very tough if she does.  But like so many things, it will be made easier by the kindness of others.  The world is full of good people---many more good people than less good ones.  And I am very grateful to them all.

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.

Reflections on Janey's week at camp

We picked up Janey early this morning from her week at Camp Fatima.  What an amazing place it is!  We were truly blown away by the kindness and generosity of the so many people that make their Exceptional Citizens Week possible.  Her counselor, Dawn, teaches autistic kids during the school year, and then takes a whole week of her year to be with an autistic child at camp, and she is just one of the hundreds of volunteers that make the camp possible.  Janey went on boat rides, rode horses, sang in the church choir, went to a dance, shot a rifle, did arts and crafts, had meals served in the dining hall by teenage boy waiters, slept in a cabin, went to a campfire, had her nails done in the camp salon, hung out and ran around with her camp friends---she had a true week of camp.  And we had a week of true respite.

We got great reports from camp.  Janey was very happy there.  Her counselor figured out she does have a tough time every day from about 3-5 pm.  This almost made me feel good to hear, as that is her tough time at home too, and it made me feel less like I'm doing something wrong during that time and more like that's just Janey.  But the rest of the time, she was nearly all happy.  I had guessed she might be.  Janey is a natural camp-goer.  She is in so many ways the opposite of me as a child.  I was a natural get-homesick-and-go-home-early camper.  Camp was everything I didn't like then and still don't like now---sports, lots of togetherness, not a lot of downtime, a place for extroverts.  Janey is not like me.  She loves to be active and busy.  She is not shy or introverted.  That was one big reflection I had on this week.  A lot of Janey isn't her autism.  It's just her, who she is and I think who she would be with the autism or not.  I need to work harder to give her the kind of recreation and activities she craves.

At home, we got a very lot of sleep and rest, and were able to eat out a lot, go on some day trips and watch a ton of "Dexter" on TV---all things we don't do with Janey home. We had a lot of fun.  But I missed Janey very much---to be completely honest, much more than I expected to.  I knew I would miss her, but because we have never, ever before had a week of respite, to say nothing of really a full day of respite, I thought the missing would be overwhelmed by the freedom.  I loved the freedom, but I missed her so, so much.  Somehow, without her, we weren't quite operating at our best as a family.  We argued more.  The boys fought more. We got irritated at smaller things---bad drivers, bad pizza, forgotten keys.
We had a great time, but it somehow felt like a great time with a piece missing.

We eased Janey back into our regular life by stopping on the way home at a friend's camp (camp in the Maine meaning, a summer house) on a lake.  We had a great boat ride and Janey had time to run around in the beautiful yard.  Then the long drive home, and re-entry.  That was a little tough.  Janey ran through all the things she most likes to do at home quickly---some iPad time, a video, asking Daddy to cook things, ordering us to snuggle her on the bed, some YouTube---and then it seemed to hit her and she melted down some.  She was tired and I am sure she was missing camp.

What did I learn from this week?  I learned Janey can thrive away from me.  I learned I need to find a way to get more sleep, because sleeping through the night felt amazing.  I learned I have to find more ways for Janey to be active physically.  I learned that there are many incredible people out there who give of their own time for families like ours.  I learned, as I keep learning in life, that our children are their own people.  They like different things than we do.  They truly do deserve, and enjoy, a life that is at times apart from us.  But I also learned that our family doesn't feel complete without Janey.  She is part of us.  At times, when Janey is very tough, it has felt like she has somehow taken away the family life we were supposed to have, but I know now that our family without her isn't our family.  It's a different family.  We need Janey, maybe even more than she needs us.

The Least of These

This evening, Janey craved some ice cream, as she often does.  Tony and the boys were off to a concert, the first big concert the boys have been to, so it was ladies night here, and I decided we'd have ice cream for our ladies night.  We walked to the corner store.  Believe me when I say that it's not really an upscale place.  Tonight was a vivid illustration of that.  The people hanging around outside the store were people you usually only see in movies when they want to show that something very scary is about to happen, or that you are in a very, very bad neighborhood.  But Janey wanted her ice cream, and my fear of how she'd react if we turned around far outweighed any nervousness about the folks outside the store.  As we got close to the door, one of the lowlife looking guys rushed over and opened it for us, and gave Janey a little bow.  When we got in, several other interesting looking people started shouting toward the cashier.  I braced myself for some demand for money, but instead they were asking him if there were any rules about how many squirts of syrup you could put in a slushie (if you are interested, there are no limits on that).  Janey took a long time to pick out her ice cream, as she doesn't like to rush important decisions, and a woman that looked very much like she might be involved in a very old profession was waiting to get ice cream, but when I told Janey we needed to hurry it up, she said "No rush at all, honey, let the little sweetie take her time"  So we did.  Finally, ice cream in hand, we went to check out.  The cashier smiled a huge smile and said "Hey, I know that girl!  Hi, there, darling!"  I said "yes, she's a regular" and he laughed and laughed and said "We are always happy to see her!"  I asked Janey to say thank you, which she sort of did, and we were on our way.

Walking home, I was fighting back happy tears.  Janey certainly wasn't acting "normal" in the store.  She was making her sounds, and jumping up and down, and waving her arms about, and in general not acting at all the way you'd expect an almost 9 year old girl to act.  But the people there treated her with kindness and respect.  And I thought how that's pretty much the only way I judge people any more.  If you are good to Janey, if you are kind to her and accept her and treat her well, I see you as a good person.  Maybe that's too simplistic.  But I can't think of a much better gauge.

I'm not very religious, but from somewhere,  from some long ago Sunday school lesson or sermon, I recalled a Bible verse.  I looked it up, and it's Matthew 25:40, which says "And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me."   It's referring to feeding the hungry, and clothing those without clothes, and visiting prisoners, but I don't think it's a stretch to apply it to being kind to another kind of "least of these brethren", those like Janey, with autism and intellectual disabilities.  How we treat people who, although I don't like to think of them as "less", are different than us---that seems like a pretty good way to judge people.  And you just never know.  Today reminded me of that.  Another time, the person going out of their way to be good to Janey might be a millionaire, or a grumpy teenager, or a fellow classmate, or anyone else.  Whoever they are, I thank them, from the bottom of my heart.

Mean people and kind people

This morning, on the way to school, Janey and I stopped at the grocery store.  She needed more juice boxes for school, where they keep a cupboard of snacks for her, as her eating is odd and often doesn't fit nicely into school lunch or packed lunch categories.  Janey has been tough lately.  She's making big strides with understanding and with doing things for herself, but as often is the case with her, those strides come with a period of strife.  She had already freaked out in the car several times, but I really had to do the store---I wasn't going to send her off to school without the tools they need to get her through the day.  That isn't fair for me to do.  So I hoped for the best and went into the store.

At first, things were okay.  Janey stayed with me, was cooperative and it seemed to be going well.  It was just a quick shop, and I had hopes of getting out of there without problems.  But then I made a huge error.  I stopped at the magazine rack.  I was hoping to pick up a crocheting magazine---my latest passion.  But I didn't follow the rules of shopping with autistic kids.  I lingered there for longer than the allowed 30 seconds. I must have looked for that magazine for a full 90 seconds, or maybe a second or two more.  I didn't find it, and the damage was done.  Janey wrenched out of my hand and ran down the aisle screaming.  I caught up to her, but not before she had grabbed some crayons and opened them in anger.  I tossed the crayons in the cart to buy---not for her, but because I couldn't leave them open on the shelf.  She continued to freak out the whole time we were checking out---loud screaming, biting sleeves, a little head banging, general hysteria.  We only had about 15 items, but it still felt like a long time standing there.

The woman behind me in line, when I caught her eye, smiled at me in a wonderful way.  She then said "I hope both of you have a better day soon!"  I wanted to hug her.  It was exactly the kind of response that is so, so wonderful to get---a kind smile, a nice word.  Then we walked toward the door, and a woman that had been in the next aisle stared me down as we both approached the door.  She muttered something under her breath that I won't repeat here, but it was far from pleasant.  It used some swear words in relation to Janey.  I felt like she had kicked me.  I just as quickly as I could got to the car, unloaded it, and had a few minutes sitting inside crying.

I don't understand what drives people to act like that.  Did she honestly feel I had just brought a brat into the store to ruin her day?  I know it's not fun to be around someone who is melting down.  I know that better than most.  But short of keeping Janey home at all times, I can't prevent the public from occasionally having to be present for one of her meltdowns.  I just can't.  And I'm sorry if they upset people.  I truly am.  I've become a little stronger over the years in dealing with stares and disapproval, but I have to say it's still incredibly hard for me to soldier through a time like today.  Which is kind of the point I'd like to make to that nasty lady---I very much don't need you pointing out to me how Janey was behaving or how it bothered you.  I'm plently aware of it.

But I'll end positively.  The sweet, sweet woman that was so helpful with her words and attitude---there are a lot of people like that.  And I hope they know how much a simple kind word can do.  I hope I have a chance in life to pay it forward and be like her as often as possible, because I have learned what a huge difference that kind of kindness can make in someone's life.

Grocery Store Thoughts

Yesterday morning Janey and I went for a quick grocery store run. If you go early in the day, the store is pretty empty and we both still have our energy and haven't fallen apart yet. It wasn't a bad trip, and of course, overthinker that I am, I overthought it all day.

The big thing that I was thinking about is how it's no longer possible in any way to pretend in my head that people think Janey is "normal". She's at least average sized for her age, maybe a little tall, but most of the time at the store, she was making her "AHHHHHHhhhhh" sound. It's a very obviously autistic or otherwise special needs type sound. And it struck me that I wasn't much bothered by that. People did look at her, but I think they looked thinking "there's a kid with special needs shopping" and not "what the heck is wrong with that kid?" and maybe that's because she's older and it's more obvious, or maybe it's a change in my perspective. Maybe I'm getting used to people looking at her and at me.

I was also reflecting on how I actually enjoyed her at the store, the unique way she has of looking at life. It will seem she is noticing nothing around her, but when she gets to an area where there is something she wants, she has laser sight. We got near the milk section, and she ran over to the individual strawberry milk bottles. I was planning on getting a big strawberry milk, but the thrilled look on her face and the excitement she had in putting the little ones in the cart overrode that. It's like that's a part of the store that makes sense to her---like it's all a big whirl of colors and shapes and then---wow! Her favorite thing, sitting right there on the shelf!

The deli was empty, so we got a little deli meat and cheese. The nice deli woman started to ask Janey about school starting soon, but I think she caught on quickly that Janey wasn't going to answer. She was so sweet with Janey---asking me if she would like a piece of cheese or roast beef. Janey isn't into swiss cheese or roast beef, so the lady asked if there was something she would like. I said a piece of salami, if she had one already cut up, but she insisted on cutting a new piece for Janey. I tried to get Janey to say thank you, but she was too busy eating. The woman looked so happy just to have pleased her. Thank you, Shaws deli woman! People like you are wonderful.

Tony takes Janey to that Shaws a lot, and the people there are gradually starting to know her. I'm realizing that is a very, very good thing when it comes to autism. It's like our favorite CVS I take her to a lot. It's making me think about the importance of local stores, of community. I am not a hugely community-oriented person, but I am seeing more and more the truth of that old "It takes a village" saying. The more people that know Janey, that know what she is like and accept her for it, the better.

I left the Shaws feeling very good about life. Some days, I actually feel like I am going to make this whole autism bit work.

An hour's worth of Janey thoughts

1. We are in the car, driving to a Barnes and Noble about 20 minutes away, to get a book for William. I put on my iPod to my big list of assorted songs, and Janey loves that. We have it down---if she likes a song, I repeat it until she stops asking. Today's repeats are "Leaving on a Jet Plane" and "Baby's Got Her Blue Jeans On". It strike me as it has many times that when we listen to music together in the car, we are both happy on the same level. There's no autism between us. We both love to hear what song comes on next, to enjoy a catchy tune. She's my dream music-listening friend.

2. At the Barnes and Noble. I've found William's book and we head to the kids' section, to see if there's a Yo Gabba Gabba book. There isn't, but Janey is happy there for a while. A little girl is dancing on the small stage there, and Janey gets up and dances with her. The girl looks happy, but her mother I think quickly sizes up that Janey isn't "right" and calls the girl away. Another mother is reading to her obviously very bright little toddler. As Janey makes her sounds and flaps her hands, she gathers the boy in tight and then leaves the area. I think how they are reacts to Janey like many of us react to being around someone obviously mentally ill. We are too polite to stare or comment, but we don't leave ourselves open to somehow be caught up in the scene. Although we know logically it's not catching, a part of us still acts like it is. It's very isolating. And I can't help but feel hurt.

3. A few minutes later. Janey runs from me, holding a train from the train table. I yell "JANEY! STOP!" but she doesn't. She runs across the store, luckily not out into the connected mall. She hits a dead end, and I catch her, we walk over to put the train back, and I lecture her and tell her we have to leave now because she ran away. She has her "wild" look on, and is laughing a lot. I think how she probably enjoys the few seconds of freedom, the once in a while being out there without holding a grown-up's hand. And how it can't happen. And what that all means.

4. The cashier smiles at Janey as we buy the book, and says "You look very happy today!" I think about how much little things like that mean to me now, how much I appreciate kind words and friendly smiles.

5. We are in the car home. I think "pretty successful trip", my mind editing out the running away, the parents acting protective, all that. The bar is fairly low for successful trips. I think then about my daydream daughter, the one I had mentally before Janey. We would have looked at all the books, talked about what she wanted to read next, bargained over how many she could buy, debated library vs. bookstore. In short, she would have been a little me. And of course, even if Janey wasn't Janey, that was just a dream. But then, as we listened to more music, I thought about how my daydream daughter and I had never listened to music with the intensity Janey does. I told myself I was getting all "Welcome to Holland", and I laughed out loud. And Janey laughed too.

Kind people

There are so many kind, caring people out there. Sometimes, when it gets tough with Janey, I forget that. I think about the few people who make mean comments or give nasty looks, but there are so many more people that are nicer than they have to be.

This thought was prompted by my trip to the post office with Janey this afternoon. I should have gone while she was in summer school, but I didn't make it. So I took her after school, and she was not happy. She was tired, hot, just not in a post office mood, I guess. I tried bribing her with donuts if she could be good. And she tried. She really tried. She kept saying to herself "If you are good, you can have a donut!" but then crying hysterically. And as I tried to hurriedly get my posting done, she suddenly hugged the teenager behind us in line, a violent, tight hug, while she cried her eyes out. I quickly tried to get her away, but the girl said "It's fine! It's okay! She is so sweet! How old is she?" I said almost 8, and as she looked a little surprised, I said "She is autistic" The girl said "Oh! Just like my nephew!" and kept holding onto Janey, despite Janey's increasingly tight hugging and loud crying. I tried to comfort Janey, reminding her about the donut, and the clerk said "Oh, she's doing the best she can! She's tired! It's hard for all of us to be good!" and then he pulled out a wedding picture to show me his niece, who was the flower girl and also autistic. Those two fine people, so different in age and appearance and background, both made me feel so hopeful about the human race. As I left, I heard the clerk telling the teenager what a fine person she was, how nice she had been. My eyes were filled with tears.

I have to remember people like that when things get hard. People, I truly believe, are mostly good. They want to be kind, they want to do the right thing. Not everyone, but a good deal of people. And I am very grateful that is the case.