How's it going?

Well, for Janey, better than expected. She is happy going to "summertime school". She seems to look forward to it, and almost always seems calm and in a good mood when I pick her up. The teachers and aides are sweet and seem to love her, and her classmates seem like a good mix. There are about 7-8 kids each day, all boys except Janey and one girl from her class during the regular year (who is head and shoulders ahead of the other kids academically). I think it works for Janey because it's pretty low key---she can move around the room, she has breakfast and lunch and snacks and takes a lot of walks inside and outside. The day is pretty short, essentially 10-2. I don't think she will learn a lot, but that is often the case whether a lot is being taught or not. She is getting some socialization. I am still not happy with the facilities, but I have come a little to terms with it. It's how it is---there's not a lot I can do, except send in some toys and books for the room, which I have done.

For me, not as great. Summer is never easy for me, and I've been feeling quite down this summer, more than most, probably. Partly it's just the same things as always, but I think each year it gets a little harder as Janey gets older. I think somewhere, somehow, even though I'd tell you otherwise, I thought she'd "grow out" of a lot of things. Maybe because William changed so radically, maybe because although I outwardly scoff at a lot I read, I do know some kids with autism do get better. Janey isn't. Her talking is steady, with maybe a touch more responsiveness but still tons and tons of delayed echolalia. She spends long periods of time lately looking at her hands, which she hadn't done in a while and which I hate to see. She can be very content just being held while holding a blanket and twisting it around---calm times for us, but not a sign of a lot of progress. The toilet training has tiny hints of progress, but yesterday again was a horrible smearing diaper around incident. And I don't see what I can do to change things. I guess I can't change things. I know that, I knew that all along, but it's still hard. And I know my own personality, which tends toward lethargy and mild depression, doesn't help. Our extremely, extremely tight money situation doesn't help---we are at the point this summer of going almost no-place unnecessary, to save money for the essentials like food and the pile of bills. I am letting things like ebay working and laundry get ahead of me, while I am tired---always tired. I do have a physical coming up, and maybe my thyroid isn't good, or my blood pressure medication needs changing, or the asthma is worse (allergies have been awful), but I tend to never allow myself to think of the problem as physical---I blame myself, not my body.

And yet, these are wonderful years. I am seeing my boys grow into men, I am seeing my beautiful girl grow up. We have times when we all laugh until we cry. I can't see these years as bad years. They are tough years, and hopefully, some years will be easier, but they are important years, the core years of our life as a family. I need to always remember that.

Feeling angry

Summer school is still making Janey happy, and I am happy with her teacher and aides. What I am not happy with is the way the school system is allocating resources to the children.

Janey's class now has about 9 kids. You might say---9 kids, a teacher and 2 aides---fine. Well, these are nine kids with quite severe special needs. I don't know everyone's story, and it's not my place to, but I suspect most of them are somewhere on the autistic spectrum. They are all about 5-6 years old. That means---they can do little for themselves. Even regular kids that age can't, but kids that are only somewhat if at all verbal, that are not inclined to follow directions, that need guidance and help every step of the way, to say nothing of desperately needing extra teaching---there is no way anyone can do that with 9 kids. I stayed today for breakfast---only one aide was there, the rest were getting more kids at the bus. She had 5 kids to take care of and give breakfast to. She is wonderful, but that is too many kids. All of them needed food opened, needed reminding to use utensil, to keep their hands to themselves, to not take off their shoes and throw them (Janey). One little boy told me in a tiny voice he didn't feel good, that he was scared. Another was very upset I opened his milk in a way he didn't like---I'm sure he has a routine for everything. Some ate, some didn't eat. One boy ate so eagerly the whole room was covered with spills, as well as all his clothes. And that was only a part of the class. I felt awful leaving when all the teachers got there, but that is why I am sending Janey---to get a little break.

And the room itself? Terrible. Broken tables, dirty floors, a hallway outside the door that is insanely unsafe, stairwells from some hellish dream. These are not elementary school rooms. They came with no toys, no books. The teacher brought some and I have brought in some. I saw after a few days the toys were like the Toy Story 3 toys---kids go through toys fast, and autistic kids even faster---they bit toys. Why shouldn't these kids have a class in any of the 50 or more elementary schools in the city? Why shouldn't they have a basic set of books and toys aimed at their needs? Why do we give them the dregs?

And there is money being spent like crazy on this program---money for about 20 buses, all with monitors, money for a huge amount of staff, money for air conditioning, breakfasts, lunches. There must be a better way. They could take that money and divide it up and let every child attend some kind of specialized camp---one already set up with toys and books and workers. They could provide respite care for parents to be able to have their kids at home in the summer and not go insane. They could buy every kid an iPad. They could do a lot of things. I'm sure I don't understand all the regulations, the restrictions, the rules. But I look at what the teachers and aides are given to work with, and I feel for them.

So, Janey is happy there. She likes noise, confusion, activity. She likes to be out of the house. She likes the nice cold air conditioning. And I think she likes being among other kids that are a little like herself. I don't know how much she understands, but she must sense at school that she is not like most of the other kids. She must spend a lot of the day confused by what is being done. Here, I think she gets it. She gets kids with their own issues. She likes it that she's not the only one running around, jumping up and down, making odd noises. And that too is making me think a lot. Her inclusion school has millions of books, toys and materials. Would it have less if the kids were all special needs kids? Kids that are sent to school on the bus because perhaps their parents don't have cars? Kids that aren't going to go home and complain, because they don't have the words to do so? I would like to hope that has nothing to do with it, but I am not so sure.

So far so good

Well, after the open house for Janey's summer school, I didn't have a lot of hope about it. However, after two days, I'm feeling much better about things.

I got an amazingly wonderful offer of help from one of Janey's teachers, Ms. Allie. She offered to go on her own time with Janey to the first day of summer school. I am really not sure if I would have even sent Janey without this offer---I was considering not sending her. But knowing she would be with someone who knows her well and loves her, it was worth a try. I talked to Janey all weekend about school, about Ms. Allie and about how it was just for the summer. I don't know what Janey understood, as I never do, but she didn't cry at all when we were in the parking lot. As we got out of the car, she saw Ms. Allie, and she never looked back. I stayed with her for about an hour, and then left, and when I picked her up, she was truly as happy looking as I've ever seen her in her life.

I had and have some concerns about the physical plant of the school. It's housed in a falling apart high school, and Janey is on the 2nd floor. The floor is open to the 1st floor in the hall, kind of like a hotel lobby. The spaces between the horizontal bars along the hallway are about 8 inches---too wide an opening. Janey would not be a climber, and is good about holding hands, but I fear for other kids. I called the special ed department to express my concerns, and got some of a non-committal answer, but I felt better that I did tell someone.

The teacher and two aides assigned to Janey's room add to my incredible lucky streak with Boston teachers. They all seem great---they seem to love Janey, to love kids in general and to understand autism.

The strange thing---there were supposed to be 10 kids in Janey's class. Only 2 have showed up so far---Janey and another boy from her class during the regular year. They added another boy today not originally on the list. That's one heck of a ratio, but I wonder about the other kids---why aren't they coming? I think the buses are very messed up, and perhaps the general reputation of the summer program, which in past years was not good, scared them off. I could have been one of those not showing up, and I'm glad I didn't get scared off.

Janey was wildly happy again today when I picked her up, and one of the aides told me she had used the potty to pee in! I almost flipped. She cried in the car on the way home, and it was quite apparent she didn't want to leave. Tonight, another huge surprise---Janey was fussy, and I was talking to her about her day, and said "You really like summertime school, don't you?" She paused and said clear as day "Summertime school is the best!" Tony and I just looked at each other in awe. She doesn't ever say things like that. I've never, ever heard her make that kind of statement when it wasn't direct or indirect echolalia.

So, I hold my breath, but for now, it looks like summer school is a hit.

Well.....

I took Janey today to the open house for her summer school. I'll start with the good, just to not be depressing. The teacher of her class works at the Henderson, so she was a familiar face to both Janey and me, which was great. Of the 10 kids in the class Janey is going to be in, 5 of them (including her) are also in her class at the Henderson, so she will be with a lot of kids she knows. There are two aides in the room, so 3 adults overall.

However....Janey was INCREDIBLY upset at the open house. Probably the worst upset I've ever seen her have in a public place. It was awful. I had been telling her all day we were going to see her summer school. I tried hard to think of a way to explain that it was just for the summer, then she will go back to her regular school. I never have any idea how much Janey understands, but she seemed excited about the whole thing, and was standing at the door eager to go when it was time. But the SECOND we got into the parking lot of the school where summer school is held, she started screaming hysterically. The school is a big huge high school, and not a welcoming looking place. Just to get to the room where her class is took an epically long hike and an elevator ride. Janey was hysterical, and wanting her shoes off very badly for some reason. The floors in the halls were filthy (the classroom was clean, though). She screamed the whole time I was trying to talk to her teachers, she screamed the whole way out, she screamed the whole way to the car. It was something else. I am quite sure she thought she was going to the Henderson, and suddenly, instead, here's the huge scary school she's never seen. And anxiety and her natural reaction to any kind of stress took over. And everyone in the place (it seems to me) is looking at me like they have never in their life seen a child the likes of Janey. I look at the other kids that are there and wonder what special need they could possibly have---being extra cute and easygoing? That's just my upset talking, but still...are there no other kids like Janey? Is nobody as tough as her? I was in tears in the car.

But I have to try it. I liked the classroom itself. I just feel for the teachers and the other kids. But people have told me not to think that so much. The teachers signed on to be special ed teachers. And Janey is wonderful in many ways. And I need that time each day. I will go insane without it. So we'll try it. If they can handle Janey, hopefully she'll calm down in time. If they can't handle her, hopefully they will tell me.

I hate the pain Janey must be in, the fear and the inability to express that fear except by screaming. I hate it that she has to go through that, and that I have to go through it. I hate a lot, today.

Crying Checklist

Since the return of the hysterical crying, we've been working on ways to stop Janey's screaming spells in the bud. Nothing always works, but we're developing a mental checklist, which I want to work into a written checklist, so in the heat of battle, we remember what to try. Here's a first attempt, in order of the first thing to try to the last

1. Food. Janey is often hungry but doesn't recognize that. When she screams, getting food into her often helps a lot. Sometimes to make this quick, we give her a milk bottle (with Strawberry Quik in it) That sometimes stops the screaming short. After that, we make sure to offer her lots of preferred foods. This works pretty well, as Janey's preferred foods are not high calorie, so she can have unlimited amounts of them.

2. Noise. We have a policy that if Janey is crying, we turn off any video she might have on. She is often upset by parts of videos, and that sometimes is the reason for crying. Or they are near over, and she is worried about that. We also turn off any music or other media we might have on.

3. Sleep. If it's close to bedtime, I just lie down with Janey and try to get her to sleep. She's pretty easy to get to sleep, so that can be a good quick solution.

4. Attention. This isn't what Janey wants as much as it would be for most kids, but sometimes it's what she needs. We will just hold her, or depending on her mood, play with her with a preferred toy---right now, a ball or hula hoop.

5. Bath. Water works wonders with Janey. In the summer, this can also be a trip to the backyard for her wading pool.

6. Change of clothes. Janey prefers no clothes, but as she gets older, we are working to get her over that! She'd rather wear dresses, so putting one on her sometimes helps.

7. Pain. Janey has never been able to tell us when she's in pain. If we have reason to think she might be, sometimes giving her a dose of Tylenol helps very much.

8. Change of scenery. This often doesn't work, but it does, it's great. We put Janey in the car and just drive. Having the windows down if possible is something that really seems to help.

9. Ignoring. This is close to a last resort. It doesn't make the screaming better, but it doesn't usually make it worse, either. This is something I often see mentioned as a strategy, and I think it works much better for kids that are screaming for attention. She doesn't usually scream for attention, so whether or not we pay attention doesn't affect her much. But sometimes, it saves our sanity just to take a few minutes and let her yell.

10. Crying couch. On days when it's very, very bad, I try telling Janey she can only cry on the crying couch, our smaller couch. I just put her there whenever the yelling starts. I don't think this does much, but it is something to do when nothing else has worked.


I'm sure there are more, but 10 is a good start. And there is no guarantee any of those will work at all. I'd say half the time, none of them do. But it gives us something to try, and feel less helpless. I think sometimes her crying is caused by internal scary things. She still mentions "The clicking sound" or "the banging sound" now and then. I wonder if those are her hearing her own heart beating when she is very worked up, or if they are internal noises. I think our pediatrician might have been onto something when he said Janey might hear voices at times. I am working on teaching her "I am scared" and once in a while, she says that, or "that's too scary". I don't think she really gets the meaning, but she might at some point.

I feel for anyone that deals with the screaming. One of the hardest parts is that people don't get the intensity of it. It's not like a fussy kid whining or a spoiled kid crying. It's about 100 times more intense than that. It's completely impossible to carry on with our day when it happens, impossible for the boys to do homework, for us to have company, to even keep your sanity much of the time. I hope it gets less as she gets older. Boy, do I hope that.

Moral support

The other day, I was at my wit's end. Janey had started the day with screaming, and by noon had worked herself into a huge screaming festival. I was tired, the kind of bone-weary tired that I get on days like that. Summer was looming ahead as two months of shear hell. And suddenly, I realized what I must do. I called my friend Michelle. We'd talked via email a lot, but never over the phone. She called me back after I left a message, and BOOM---what was a horrible day turned into a red-letter day. It was WONDERFUL to talk to someone that understood, someone with an autistic daughter of her own, someone that just got the feelings and frustration and emotions of the life I'm living. I am blessed with many wonderful friends, but I don't think anyone except someone else who has lived this life can really, really understand.

And that's one thing that's wonderful about the internet. I would not know her in "regular" life. I can't imagine being a special needs parent before the internet existed. It came into wide use the same year William was born, in 1994, and from that time on, it's been there for me. And of course, the internet is not an entity on its own. It's people---people that reach out to others and to whom we can reach out, and realize we are not alone, not at all.

I have read a few great comments on this blog lately. That means a lot to me also. I write this mostly as a release---a place to go to when I need to say things that I don't have another place to say. But when I realize that it's helped others, either by telling them that others feel they way they do, or by sharing with people who would not otherwise know what life with autism was like, it's a huge boost. I want to be able to do that---to let people know they aren't alone, to tell what in my eyes is the truth about autism, the good, the bad, the terrible, the funny---not a syrupy rainbows and unicorns view, or a view that advocates a certain strict regiment, or a judgemental view, but just my personal view, which I all I really have to give.

And how is Janey lately? Well, summer is not easy. She is adjusting a little, I think, but then will come summer school and a new challenge. She has another loose tooth and it's bothering her a lot. She has had a few huge sprees of getting into things when I got lax about bungee cording the fridge. She loves the wading pool, and that is a saving grace. We'll get by, for now. With a little help from our friends.