The hardest days, the hardest decisions

This is a hard post for me to write. I've been putting it off and even thinking about just giving up this whole blog thing. But I want to be honest and tell about the last week or so.

Starting about a week ago Thursday, Janey entered some kind of incredibly tough phase. She was literally screaming all day and most of the night. I don't mean fussing, crying off and on, I mean screaming, hysterically, all day, all but a few hours of the night. She would stop only to say things like "I WANT MAMA" even if I was right there, "I WANT A BABA" only to toss it aside if we gave her one "I WANT A VIDEO" only to cry at anything we put on. We were getting no sleep. We were literally in despair, trying to figure out how to make her happy. It got worse and worse and worse as the days went on. Finally on Wednesday, we got a call from the school that they thought she was sick. I knew she wasn't sick, physically anyway, but I knew how it could seem that way. I picked her up early, and that was the worst day of all. She was so upset that whole afternoon and night, and slept almost not at all. Tony and I were just looking at each other without a single idea what to do next. The boys were unable to do homework, we were not able to have even a minute to talk as a family, and meanwhile Janey was in such mental pain it was heartbreaking to watch. Tony stayed home from work Thursday---he hadn't slept. We called her pediatrician first thing---to rule out anything physical and to just ask for any help he might have. She was so upset in the waiting room that nurses kept coming out to reassure us we would see the doctor soon, even though it was only a few minutes wait. When her doctor saw her, he was visibly shaken, and he's been a doctor for about 30 years and has known our family since the day William was born. He did an exam---as I thought, her ears and mouth and lungs were all fine. He said he thought it was possible she was hearing voices---based on how she was holding her ears and just based on a hunch, from being a doctor for a long time. I've never, ever seen him go out on a limb like that, and I am inclined to think he might have been right. He put in a call right away to a psychiatrist, and said he didn't want it to be more than 24 hours before she was seen. We went home and tried to comfort her, without success. Finally, we got a call from him that evening---he'd talked to the psychiatrist, who will see her Monday, and the psych. recommended we start her on medication---Risperdal. I knew a lot about Risperdal---it's the drug I figured would be recommended if one was. And it was exactly the drug I was completely opposed to for a long time. But the week in what could only be called near-hell, for both Janey and us, made me realize that it was my own reasons, and not the best interests of Janey, that was keeping me from being open to it. No-one, NO-ONE, could live long term the way we lived that week. And so I said, yes. We will try it.

Tony picked it up that night, and we gave her her first dose that bedtime. She went to sleep after about 45 minutes, and slept 6 hours---much longer than any recent night. Then she woke up, but didn't scream, for about 3 hours. The next day was mixed. She had a long time without crying in the morning, but by afternoon was back to a great deal of screaming, and the evening was very tough. We gave her the second dose that night. She slept from 8pm until 4am, then woke up screaming. She cried for about 2 hours. Then....no crying all day. NONE. In fact, a great deal of smiling--a happier, more relaxed Janey than I think I have ever seen. I was holding my breath. I really deep inside did not WANT the medication to work, so I could say I tried it and it did no good. But it would be impossible not to notice the change today. We even went to dinner at fast food Mexican. Janey was happy the whole time, and happy to go to a store afterward, and happy in the car, and talkative, and answering questions, and just plain RELAXED. I have never really seen her relaxed.

I don't think it will last. It's too much for a medication to do. But Tony and I both said it has taught us something valuable---to see that autism, or retardation, is not the thing to fear. If Janey can be happy, can enjoy life, can have normal emotions and can feel what it's like to be relaxed, then all the rest we can take. It doesn't matter much if she ever reads, or "passes" as normal. If we can all be together as a family and enjoy each other's company, then all the rest is icing on the cake.

I still don't like the idea of giving her medication. But I know people sometimes need medication. I would be very unhealthy without daily thyroid replacement, and Carrie would not probably be around at all. Tony can't live without insulin. Freddy would be gone without his asthma medication, quite literally and heartbreakingly. And so perhaps Janey too has something missing in her makeup which medication can help with. I'm not sure yet. But I can almost hope so.

Tough week---has to get better

I hope I don't have another week like this one in a hurry. Freddy seems to be on the mend. The best guess is that he had infectious colitis, which is now healing. Just another scary disease you never know exists until you find out the hard way. Janey hasn't had a worse week in years. This morning I set her off by the unforgivable sin of trying to have her watch a Kipper video she hadn't seen before. She loves Kipper, and I found a new one on the Netflix instant viewing cue, and put it on as she seemed happy today. That lasted about one second after she realized she wasn't watching something familiar. She's been screaming now for half an hour. She screamed much of the day at school yesterday too, leading the principal to decide she shouldn't go on a field trip to the junior Special Olympics field day she was supposed to go. Probably the right decision, but I felt sad she missed yet another opportunity due to her tantrums. I think she might have been happy once she was on the school bus. I told her all morning she was going to go on a school bus. But I am glad the principal is involved and caring enough to make such a decision. I'm really drained. I've got nothing left. I wish I could go away for just a day or so. But Janey is very, very upset when I'm not around lately, and it's just too much for one parent to handle that and 2 other kids and all the house stuff. I wish there was still respite money out there. Oh, well. Janey said some good things this morning before she freaked out. She told me early on "I want to watch a Winnie the Pooh video" and when I didn't hop right up, she said "Right now!" Then later when we were doing questions for M&Ms, and I asked her her teacher's name, she said "Ms. LeMeu" for the first time ever. Then I asked her what was in Ms. LeMeu's tummy, and she said right away "A baby". That was great. She often doesn't really listen to the question. I was asking her how old she was, and she constantly said "Janey". Then as a guess, said "J-A-N-E Janey" then "Yellow". She seems to think if something worked once to answer a question, it might work again. Well, she's screaming in my ear so I guess my 5 minute writing time is over.

Positive time!

Since I kind of "outed" myself on Facebook, giving a link to this blog, which I haven't done before, I thought I'd try to write something a little more positive. Janey is still having an extremely rough time---screaming non-stop most of the morning. But we had a little success early today with telling her that we weren't going to do what she wanted unless she asked without crying, and then responding immediately to even a second of non-crying. She managed to tell us she wanted salsa, she wanted Kipper, she wanted a few things we were able to give her once she asked without crying. She held herself together for about an hour. Now it's back to the almost non-stop crying. It hasn't been like this for a bit of a while. She is very sensitive to our moods, and we have been a little worried about Freddy and of course it also becomes a vicious circle with her crying---we are tense because she's crying, so she cries because we're tense. I've been trying to do more work lately on Amazon and ebay, but I really can't work when she is screaming. Well, this is not turning out that positively. Let's see---what can I say that's cheery? Hmmm. Since some Facebook readers might possibly be reading this, if they didn't heed my warning it's pretty depressing stuff, I can say how grateful I am to Facebook. It lets me have contact with adults, with friends I really never, ever thought I'd be in contact with again in my life, on a daily basis. I can play my beloved word games, and see what is up in their lives. I really like how it forms a news source that's personalized---for example, yesterday there were all kinds of storms and tornado warnings, and I was able to follow those by reading what people in Maine and here posted. When we had the Canadian smoke, I knew it was on the way from the Maine posts. Some friends that are not on Facebook just don't get it at all---they say things like "if I wanted to talk to an old friend, I'd just call them". Well, you can say that, but in reality, it doesn't happen. Or if it does, you talk once in a few years, say you'd like to keep up, but there is no way you'd have the initiative or time to get a quick update on their lives every day or so. This is especially the case when you have a disabled child. I just am not able to get out there and meet people much. This way, when I have a few minutes free, I can instantly get a socialization fix. It's wonderful.

A couple horrible days

The last few days can only really be called horrible. Thursday night Janey was up all night, manic and wild. Friday morning we realized we had a medical emergency on our hands with Freddy---quite a bit of rectal bleeding. I was at the emergency room with him all day, from 5amto 5pm. No real answers yet---they ruled out a few things, but have to do a lot more testing. He feels fine and is home and in fact at a slumber party tonight, but my nerves are shot and I'm very scared, to be honest. I was so tired at the hospital as we waited and waited and waited for tests that I truly didn't know how I would go on. Nothing to eat all day, no sleep, worry and fear, Freddy upset mostly because he didn't want to go to the hospital---I would say that day was truly a low point for me and I am sure for him. I came home, and thankfully Janey slept, and I slept from 6pm to 7am, and some more during the day. Today Janey cried again much of the day, including true hysteria tonight, just the awful, awful crying where nothing helps and she is completely hysterical. We took her fora car ride to get her to sleep, and she did go to sleep but woke up as we were coming in the driveway. RIght now she is asleep and quiet, but I'm sure she's be back up. It feels like I can just barely take this lately. At a few points, I really felt like I was shutting down---It's the first time I knew what that felt like. I just felt like "Okay, I can't take any more. I'm going to turn off my brain now" I felt numb. I know life isn't fair. Of course it's not fair. There are many that have it harder than me. But why, why, WHY can't I have JUST a child with autism, or JUST a child with medical issues, or JUST a child that is Aspergers-like? Or if I have to have all of them, why can't I have enough money so it wasn't on my mind all day at the hospital how awful the co-pays are going to be, not that it would ever affect me getting Fred the care he needs? Or could we just have a house that's more suitable for a family of 5? Or just a tiny bit more help? Or any of those?

Okay, enough ranting. I've resisted even writing here, which I see as my refuge, because it's too depressing. I like to be positive. Thank God Freddy didn't have some of things they tested for, and that I have a husband who helps all he can, and that we have a roof over our heads. Janey's manic crying will get better again in time. It will all look brighter at some point.

Tired

Tired takes on a whole new meaning when you don't sleep much for nights in a row. I've been relatively lucky with Janey---most of the time, her sleep is fairly okay---she'll go to bed around 8 and sleep until about 5, which is close to the schedule the rest of us have---we are early to bed, early to rise folks. But when something throws that off, such as her sickness this week, it's hell on earth. She has been known to stay up for nights in a row, in one of two modes---the manic mode, where she is happy and hyper and wants to watch TV, eat everything, play, turn off and on lights and so on. And then there's the crying mode, where she can literally cry all night---that tuneless moaning cry that just completely wears you down after a while, a short while. I am not sure which is worse. The manic is harder to watch, as you have to be totally alert to make sure she doesn't get a fun notion like eating cream cheese out of the container or standing on chairs to reach food that is up high, but the crying mode is harder to take, although if you try very hard, sometimes you can drift off a little during it. But the nights aren't as hard as the next days. I call it zombie mode---you can sort of function, can drive people places hopefully okay, can say hi and look a tiny bit normal, but once the slightest chance presents itself, you are napping. And needless to say, nothing gets done---no dishes, no laundry, no work, no anything. Which leads to depression, for me anyway, at living in a pit and not being up to doing much about it. Sometimes during these cycles I feel like I'm part of some cruel secret sleep deprivation experiment. It's hard because Tony works very long and early hours---he leaves the house at 5 and gets home at 5, and then needs to get to bed about 8 to be able to function. So night duty, although he tries hard, is usually mine, and day duty too. He's great on the weekends---I have to give him a huge amount of credit. But during the week, it's mainly my game, and believe me, I'd be up for it if I got enough sleep. When I don't, I'm doing things like this...writing long complaining blog posts while my eyes flutter open and shut and my mind cries out for coffee.

Rant about doctor's appointment

It was obvious last night Janey was pretty sick---she had a fever and barely slept, just cried a moaning cry all night, and she was refusing anything to drink---when she tried to drink, she screamed. I kept her home today and although I don't usually rush to go to the drs, I had a feeling I needed to, especially because she can't tell me what's wrong. It turned out she has pretty bad strep throat---it showed up almost instantly on the rapid strep test, which I guess usually doesn't happen. But getting to that result was just awful---I guess I've been lucky over the years, but I didn't my regular doctor and in fact didn't even go to my regular office---my doctor is part of a group that has lots of locations and I chose a nearer one for today. The nurse practitioner I got obviously had no understanding or sympathy for autism. She kept asking Janey questions, although I told her she would not get answers---I think she thought someone Janey was just shy and if she asked enough, Janey would answer. Finally she gave up on that, saying something like "I know you understand me, so tell if if you want to". I felt like screaming already at that point. Then she seemed very surprised Janey wasn't totally open to have her ears looked at, and after at first acting like I was crazy to immediately hold Janey down, saw quickly I had to. Then she tried to look in Janey's mouth. No way. She put in a tongue depressor and tried to sort of pry her mouth open. I said Janey would bite the depressor, and she shrugged me off. Janey did bite it, and had half bitten it off by the time I forced her mouth open enough to get it out. Then the NP tried a last ditch effort to stick those strep testing swaps in Janey's mouth. Janey freaked out, and when she got the swabs out, the NP saw Janey had bit the end off them. She sort of freaked and tried again to get Janey's mouth open, but I just put my hand in front of Janey's mouth and she spit them out for me, which she is pretty good about doing. By that point, the lady had had enough, and said she just couldn't do it, and would just give Janey medication without testing her. I said no, that giving Janey medication was so hard I wasn't going to do it unless I had to, and that I could hold Janey in such a way that she COULD get the swaps (I had told her this at the start, but of course, what did I know?). The lady left without talking, left the door open, and said in a loud voice "Can anyone helps me with a strep test on a NON-COMPLIANT PATIENT?" And then lots of muttered complaints about Janey. Finally, she got a medical aide to come in, a young lady who must be the brains of the office, and she did exactly what I would have done---held Janey's nose until her mouth opened, and then held her mouth open gently but firmly and got the swab nicely. I thanked her very much. The NP was obviously super annoyed by then. It was actually the medical aide who came right back in to tell me Janey did have strep.

Lots of ranting, but my points are a few---why couldn't the NP LISTEN to me and BELIEVE what I was saying? Janey DID NOT understand her, was scared to death, has no idea why she is there or why we want to open her mouth, is feeling sick to boot. And LET ME DO what I know works---it's not the NP's way, but I know Janey, and I know the quick and firm approach will save us all a lot of time and anguish. And DON'T call Janey non-compliant. She is 5 and she is autistic. I would have been fine with her saying just that---"could anyone help me a little with an autistic patient?" Autism is not a bad word. I know Janey's autistic---it doesn't upset me to hear that. And don't fall into all the old stupid beliefs---I felt she though I was someone speaking for Janey and preventing Janey from speaking. God knows if Janey could speak for herself, I would love it beyond all reason. I always let the boys speak for themselves at the doctors, from the time they could speak. They are both very confident and outgoing with medical people, I think partly due to that. But Janey can't. And I WILL speak for her.

Church and autism

I am not terribly religious. I go back and forth between being an agnostic and having some rather wavering belief. I'm being totally honest here. But something I do want is for my family to go to church, my children to learn the basic Bible stories, the Golden Rule, the community that comes with having a church, the music, the reason for holidays like Christmas, etc. However, with a child with autism, this is pretty much impossible to do as a family. I've searched the web, I've asked around, I've tried churches, I've put some effort into this. But church and a lower functioning child with autism just don't mix. Sunday schools are not equipped to deal with her. I could go to church and stay in the nursery with her. But that kind of defeats the purpose. I want that hour to renew myself, to reflect, to listen. And I want to do that with Tony. I want my sons to be with me. I could try bringing Janey into church with me. RIGHT.... Not only would I not get anything from the service, but no-one else in the entire church would. She would scream, run, yell, raise a fuss like you would just not believe. I've tried. I could go to church by myself, but that is not what I am looking for. I want what most people can find fairly readily---a church that welcomes our family, that has a Sunday School or nursery for that hour so I can listen, that will welcome ALL our family members. I think if some denomination really wanted to grow, a great way to do that would be to welcome families with autistic kids, and advertise that. This is another case where the current wider definition of autism hurts. I once saw a publication put out by a church about welcoming autistic members. Well, it was obvious they meant people with Aspergers or very high functioning autism---verbal people. They talked about issues that are not Janey's issues, not about how to just keep a child happy so the parents could go to church, or the siblings could. Or how to possibly include Janey somehow. I am not counting on her learning a lot of religion. But she could and does learn hymns, and that would be something I would love. I bet she could learn some simple Bible verses, without probably understanding what she was saying. And I KNOW she could feel the love that a true church community could give, and I KNOW I would be helped by being able to go to church, as we used to regularly before our church closed, right around the time it also became impossible to really go to church anyway. That's my Sunday morning thought for today.