Future visions

My leg is much better today, although still a bit of a mystery injury. I was able to drive Janey to and from summertime school, but by the time I got back from picking her up, the pain was hitting a bit. So I got an brief try of what it would be like to care for Janey while unable to move around well. In short, I really can't. I managed by letting her do most anything that wouldn't hurt her, which included eating bites of most of a box of donuts and throwing the rest on the floor, pouring herself some seltzer and getting much of it on the floor and then having me use the remote to change Netflix shows about every 2 minutes to keep her happy. The boys were both at their summer programs and Tony was at work, and I had about 2 hours to fill. She didn't try anything dangerous---there isn't much dangerous she can get at in the house, as we have childproofed pretty heavily---no burners on the stove, anything potentially harmful on high shelves or locked. She is easily able to open the bungle cords we have used to keep the fridge closed, though, so basically if I can't get to her, she will eat what she feels like eating---not dangerous, but odd, like ketchup, spaghetti sauce, mayonnaise, those stale breads that come with Chinese food, etc. Those are the reasons I keep on my toes always around her. I could see her at all times, and of course I would have pushed through the pain had she tried to do anything that could hurt her, but the house was a mess when Tony and the boys got home (not that it isn't always a mess, but more of one!)

And that is what triggered future visions. I'm not getting younger. I hope I'll be in good shape for many years to come, and I hope Janey gets easier. But what if she doesn't, and what if I get a worse injury? What if I got very sick? What if I, well, was no longer around? What happens to the kids that never grow up? How does it work? If there are really that many kids with autism out there, I can't see how it will be possible for them to have enough adult housing for all of them. There are going to be a lot of adults with autism living at home with aging parents. That's the big issue that is going to have to be tackled in the next 20 years in the world of autism.

So for now, I'll just hope my leg gets all better soon. I'll say a huge thank you to summer school, and to my husband and boys for all they do. And we'll manage, for now.

House of Cards

The last few days have reminded me that even when things seem to be going smoothly with Janey, it's all a house of cards. Monday, it felt like the start of a week where everything was falling into place. Janey went to summertime school, Freddy and William to summer programs they are in. I got a lot done, paid bills, went to the library, did laundry. The only issue was a slight pain I was feeling in my right upper leg. However, by evening, that pain was not slight, but horrible---very, very severe pain. I think I pulled a muscle when a pile of library books started to fall and I righted them by twisting around, while holding Janey's hand and her backpack and my pocketbook, taking her to the car in the morning. I couldn't sleep last night, despite everything I tried for the pain, and this morning it was obvious there was no way I could drive Janey to school. That left a problem. I could of course keep her home, but that would not let me keep my leg up. There is no sitting by relaxing when caring for Janey. You have to be ready to jump up constantly. The boys had their own places to be. And so Tony needed to stay home. It's not easy for him to miss work at his current job, but there was really no other alternative.

My leg is already feeling better, thanks to rest and ice and heat all day. But I kept reflecting on how easily it all falls apart. Of course, that's not unique to a family with an autistic child, but I do think it makes it harder. If Janey were a "normal" 7 year old, I could have kept her home and probably cared for my leg too. Or I could have called a friend to see if she could go to their house, or they could drive her. But with Janey, something like that is not a last minute thing. There are few people that can watch her, and even for those who can, they need lead time, instructions. They need to be able to help dress her, they need to know what she is prone to doing, they need to understand the huge need for handholding and constant vigilance. I can't call someone on 10 minutes notice, I couldn't take care of her myself. So it's Tony. But what if Tony was away? What if both of us got hurt, or sick? What if Tony simply couldn't take a day off? What if my leg was still bad tonight, and we needed help all week?

We'd work it out, someone. The boys would help, family would help, friends would help. But it would be hard for everyone, and more than I want to ask of people, and more than they could do for an extended time. It's truly a house of cards, with a breeze or a careless hand or a moment of not paying attention causing it all to potentially fall apart. It's scary.

The Noise

When Janey's isn't talking or echolaliaing or crying or laughing, she is often making a sound. It's a very hard sound to describe. It sounds like a long, drawn-out "AAAAAAAAAAAHHHHHHHHHHH" kind of noise, not always in all caps loudness, but often. It's a background kind of noise, one that seems to just mean "I'm still here. I'm wandering around or watching a video or just hanging out, and I need to make sound" I have to admit---I hate it. I truly hate it. It annoys me no end. I know it's part of Janey, part of her autism, and certainly not something she is doing to annoy me or anyone else. I don't let her know I hate it, as I am almost certain she has no idea she makes it. I am sure she makes it more often than I even notice, because after a while, it's just part of the background house sound, but when I do notice it, when I am trying to hear something else or rest or just let myself think, it sticks into my head like a dagger. I don't even know if other members of my family are annoyed with it---I don't think we've ever talked about it, and we are talkers. It's just so much part of the background static that it hardly bears mentioning, but mentioning it I am. For no productive reason, I guess.

The Bystander's Guide to Reacting to Autism

Let's say you know next to nothing about autism. You are out in public someplace, and you see a kid (or an adult) acting very strangely. Perhaps they are crying for no reason you can see, or flapping their arms around, or laughing over nothing, or repeating the same phrase over and over in the same tone, or obsessively talking about a topic, or just plain looking odd and unconnected, or staring at their hands, or any number of other behaviors that just look off. How should you react? Here's your handy guide!

Your first option, and probably the best one----if the child isn't affecting you in any way, just ignore them. You don't have to react at all. This is the option most people choose, and it's fine.

However, if you feel you must or if you want to react, one handy trick is to find the parent and to smile at them. Smile that understanding smile that says "Hey, we've all been there" or perhaps "I see your interesting and intriguing child" or even "I can tell your child is autistic, and I just want to give you a smile of support". Any of those smiles, those looks, will generally be welcomed by a parent or caregiver.

But what if the child is bothering you or annoying you? Well, first of all, judge how long you'll really have to be in their presence. If you are on a subway, or in a store, or grabbing some takeout, or in a park, are you really going to have to be around that child more than a few minutes? Can you find it in yourself to think "yes, they are being a little annoying, but I know their parents are doing the best they can, and they live with that child all the time. They are dealing with a disability, and what would I have them do? Hide the child away?" Think those things, and then go back to idea #1 or idea #2. Ignore them, or be supportive and smile.

What if you have to be with the child for longer? Well, then, think about whether the parents have any choice about bringing their child to be in your presence. Are you in a doctor's waiting room, and they are too? Or are you at a playground with your children, as they are with theirs? Then ask yourself---what if the child had a physical deformity that upset you to see? Would you say "Why would they force me to be in the presence of that child? They should have kept them hidden away. They shouldn't have taken them for medical care or to a public recreation area" Then change the words physical deformity for mental disability, and think how you think about yourself for thinking that way.

Now let's go over the rarest of situations. You are at someplace you paid to be at, trying to enjoy yourself. You are at a restaurant, or a movie, or a museum. There is an autistic child there, screaming or laughing or talking loudly. Their parents don't seem to be succeeding in quieting them. They are bothering you, and you feel like your outing, for which you paid good money, is being ruined. You feel like giving those parents a piece of your mind, or at least asking them to leave.

This is where it gets tricky. But for a minute, put yourself in the shoes of the parents. Perhaps they haven't eaten out as a family for years. They have decided to give it one more try. It isn't going well. They have paid for their meal, and they are going to do their best to get through it. Perhaps the mother is aching to take the child out to the car, to once again sit outside so the rest of the family can enjoy the meal and so strangers aren't annoyed. Or maybe it's the museum. The child loves whatever the museum shows, but the parents have resisted taking them there, knowing that their behavior might bother others. Finally, one day, they give it a try, bracing themselves for the situation.

There's no good answer here. The kind thing to do, the compassionate thing, would be to go way back to the first two ideas. Ignore the child, or smile and support the parent. Or go ahead. Complain. It isn't fair to you. You'll make the parents extremely hurt, or extremely angry. They will learn their lesson. They will learn to keep that child home. But keep a little statistic in mind. They say one in 88 children is autistic. You might be the next one with autistic child. Or grandchild. And what goes around, comes around.

I'll end with a thank you, a thank you to the probably 95% of people who ignore or smile. Thank you for giving me the courage to give Janey a full life. To the 5%, I am sorry. I'm sorry if my child has disturbed you. I can sincerely say I hope we don't cross your path again.

Summertime School

Janey is now going to what we call Summertime School, and what is officially called Extended School Year, or ESY. I was reading a little about the laws pertaining to ESY. It's required to be offered to kids at substantial risk of regressing during the summer, which is certainly the case with Janey. We are lucky in Boston that it's offered for 6 weeks, 5 days a week, 5 hours a day. The law doesn't require that much, and I know from talking to people in other parts of the country that some places have only a few weeks of it. It's going well so far. I like Janey's teacher, and she also gets to see her ABA specialist, the same one from the school year, and a few kids from her school are also in her class. Janey is eager to go each day. I think she truly needs the structure. And I know I need the break. The thought of a summer without some program, as was the case until last year, is very hard to imagine.

Although I haven't seen Janey in her classroom environment, it's interesting to see the kids when I drop her off or pick her up. All the kids in her program (as far as I know) are autistic. It's like seeing a world where autism is the norm. And it's making me realize that I think Janey is tougher than most kids with autism, at least in terms of being emotional and moody. The first day, it took a long time to get all the buses there, and the kids had to wait outside a long time. Janey was actually very good that day, but I was figuring a lot of kids would have a hard time, and I didn't really see that. Most were quiet, most didn't seem to answer when asked questions, but I heard only a few crying. So far, I haven't seen a lot of kids trying to run away, or making loud strange noises, or yelling things, all things that Janey does regularly. That's not to say they don't, but I thought seeing around a 100 autistic kids at once, you'd see a lot of it, and I haven't. That was a little eye-opening. There is hardly ever a moment when we can say Janey is truly being relaxed and even-tempered. She is often happy, but a loud happy, she is often sad, and a loud sad. Sometimes she does zone out, but not long enough so you can relax much.

Aside from summer school, our summer has been okay. We are keeping Janey busy, and so keeping ourselves sane. Regular school starts in about 2 months. Not that I'm counting.

Two views of a day

View one

We went to New Hampshire to a friend's lake house. Janey cried a good deal of the trip up. Once we were there, five little kids, nieces and nephews of the owner, came over to visit. They were ages 2-8. All of them, including the 2 year old, talked far better than Janey, of course. Janey paid them little attention, although they were very kind to her. We spent much of the day trying to keep Janey from crying fits, fits that confused the kids. I got to see the mother of my old boyfriend, which was great, but Janey, while sitting on her lap, peed all over her. Janey several times tossed items around the yard into the water, making people have to get in and drag them out. During supper, she kept eating food off the other kids' plates. The ride home featured Janey screaming for hours. A long day.

View two

We went to New Hampshire to a friend's lake house. Janey was thrilled to be on the lake. She adored the boat that was there, and spent a long time sitting on it even before she got to go for a boat ride. When she did get the ride, she was happy beyond words... (see picture!) The kids there were all sweet and understanding of Janey. One girl was the same age as her, and treated her like a friend, even saying she wanted Janey to come over soon for a playdate. Janey swam, played outside, ate well and had a blast. We all enjoyed the day a lot.

Well, I choose View Two. But I realize how much my mind edits things. The boys remember far more of View One, especially the screaming in the car. The other people there probably remember View One too. I wonder how the kids see it? They were quite confused by Janey, especially the girl her age. They kept asking "But WHY is she crying? Why doesn't she answer us? Does she do math in school?" They had never met someone with autism before. It was a baptism in fire. But I still will remember View Two most, especially Janey's bliss one the boat. That was me at 7. I lived for time on the ocean in my grandfather's boat. I've always loved the water, for as long as I can remember. So I pick to see that, not the screaming or the lack of toilet training or the non-talking. I pick the part I love.

Lucky Janey, lucky me

Janey and I both had such a treat today. She got invited to go spend the day with both her classroom teachers from last year! It was a wonderful, wonderful treat to end a fantastic school year. All reports were that Janey had a very good time. And on top of that, they invited over her summer school teacher to meet Janey! I got to meet her too, and it made me feel much more ready for Monday. I got a nice rest while Janey was there---some time with Freddy, some time to relax and play word games!

That's just one example of the kind of teachers and staff I've been lucky enough to have involved in Janey's life. And I know it's luck. I think almost all teachers do the best they can, but not all schools have the philosophy and atmosphere to attract people like Janey's school does.

And it's pure luck she's there. It's luck that actually goes back to long before she was born, when Freddy was just two. I was looking for a school for William, and visited the Henderson (then the O'Hearn) I knew it was where I wanted William to be, although they had no openings for a special ed student at his grade level. I found out during that visit, though, that they did have a 3 year old program that I could attempt to get Freddy into, for the fall after he turned three. The odds were LONG. When I went to put him into the lottery, the staff at the assignment center basically said "You know he won't get in, right?" He had no kind of preference---he didn't live in the neighborhood, he didn't have a sibling there, he didn't have any special needs, and he was competing any other 2 year old in our zone that wanted a slot. I still can't believe the moment I opened the letter and saw he had somehow, by some miracle I still don't understand, gotten the slot, a slot that was good through 5th grade! He was there for 8 years! And 2 years after he first got in, we finally also got William in. And at the last possible moment, we found out we were expecting a little sibling for Freddy, just in time for her to get sibling preference for a 3 year old slot. Freddy and Janey overlapped at the school for just one year. It was soon after Janey started there that it became obvious she was regressing very badly, and she got the autism diagnosis December of that year. But unlike so many other kids that have disabilities, she didn't have to change schools. She stayed right there, where her brothers had gone. It means so much to me that she is having teachers they had, that people remember the boys, that I have been associated with the school for 13 years now. If anything in this long chain of events had gone differently, she wouldn't be at that school. The waiting list for a slot there in kindergarten, with no openings available, is currently 700 kids long.

And so, although some days I don't feel lucky in other ways, when it comes to schools, I certainly am. I'm lucky too that I am living in this time, when autism is better understood than in the past.

My wish, my dream, is that every child in America, or actually, every child in the world with autism can also be lucky, lucky to be surrounded by people that care about and love them, that are up to the huge challenges they can bring, that have the patience it takes to care for our special kids, and that they also get the time of respite from that all-consuming care that they need. Thank you, Jen and Christine, for giving me that time today!