Tougher days again

Either the medication only worked for a few days, or Janey is just having a tough time enough to overcome its effects. Today there was a lot of the hysterical, screaming, ear-covering crying. There were also some good times when she was calm for a while, but by the end of the day, it was all the screaming. She had done very well through Wednesday. Thursday her cousin was visiting who I rarely get to see, and I think she was upset she didn't get my total attention, and she was fairly fussy, although when I told her we would walk to get ice cream in the afternoon, it was really nice---she cheered right up in anticipation even though it was about a half hour before we got out the door. Yesterday there was some of the severe crying, and today the lots of it again. We gave her the doubled dose tonight as we have been told we could if the smaller dose stopped working. But I'm not going any higher than that, so if this stops working or doesn't work, we are back to square one---I won't keep her on medication that doesn't help. It was great the few days it worked---seeing her smiling, calm face so much of the day. She seemed in despair tonight. I can't reach her when she's like that---I try everything on earth---singing, rubbing her back, talking in a calm monologue, distractions---nothing helps. Ignoring her works not at all. I feel so helpless when she cries so hard and I can't help.

Thoughts at the ice cream shop

I took Janey for ice cream after school today, partly as a treat for going back to school and partly to keep her out of the house so Tony could fully concentrate on the World Cup match with Italy playing. As I sat watching her eat her big bowl of chocolate chip, lots of other kids came in and got ice cream. I had some moments of just being very proud of who Janey is. Although I wish more than anything she could talk more, be "normal" more, socialize more, the kids that were there that day made me think that she's got some pretty good points. First a couple of bratty little boys came in with their snobby looking mother. She ordered them junior cones---they screamed because they didn't want a kids size. They said they wanted strawberry, and as the scooper began scooping, they decided they wanted to know all the flavors. Mama had them read them all themselves, although it took forever, surely to impress us all that her kids who appeared about 4 and 6 could read. Finally they picked a flavor, and then had a fit again about the size, freaked over the wrong kind of cone and finally took the ice cream with nary a thank you to the scooper or their mother. I thought about how Janey was happy to be there, happy to have ice cream of any size, the flavor I picked for her, happy although she didn't have options. I wish she could pick. But seeing them, I realized being able to pick, and talk, and read, and argue, didn't necessarily make them too happy (or pleasant). Then a man came in with a girl that looked just about Janey's age. She didn't want ice cream at all. She wanted to stand in the door and let the AC out, to run out toward the street despite her father saying no over and over, to put her grimy hands on the window despite the owner asking her not to, to generally make everyone in the place annoyed. Another girl that seemed bright, seemed "normal" but wasn't happy or making anyone else happy. I know a few days ago Janey would have been screaming. But a few days ago, I would not have taken her in public for ice cream. I know better---she wouldn't enjoy it, I wouldn't enjoy it, no-one in the place would enjoy it. However, those "normal" kids weren't enjoying themselves or letting others enjoy themselves either (except Janey, who engrossed in her ice cream didn't even notice them). I don't know what the conclusion is here. I guess it's partly a reminder to me---be grateful that Janey can eat, can walk, can have happy moments. Don't always feel envy for others with more standard kids. Sometimes, I'm the one proud in the ice cream shop.

Back to school

Janey went back to school today, after her appt. with the psychiatrist. The appt. was okay---I know that psychiatrists mostly just talk about medication these days. I can't really picture any kind of therapy with Janey anyway, with her limited talking. It was interesting---she cried hard for the first time in a few days when we walked into the waiting room. She really doesn't like doctor's offices. It was kind of good in a way to see her that aware of her surroundings. The doctor said we don't have to continue the medication full time---maybe we should try it for a month and then try without it for a month, which I am down with. We didn't increase the dose last night as there was really no need---she's enough better and calmer, and is sleeping. It's been wonderful to have her not cry all day. She was happy to be at school and it was great seeing how happy everyone was to see her. I could have stayed there all day just seeing her happy face with the other kids, and how sweet all the teachers and staff are with her. I do realize how lucky I am that she is in the school she's in, full of people who truly love her, and people I have known for many years now, from before she was a twinkle in our eyes. I hope the day went well. I will pick her up today, although Tony usually does on his days off, as it's World Cup time and Italy is playing---an event of supreme importance.

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.