Waited a day

I waited a day to write about something that happened yesterday, until I'd had a chance to calm down. I have now, and it's not as fresh and hurtful, but still very much so.

Janey had an appointment to see the psychiatrist that prescribed the medication for her a few months ago, to check on her. We went in by train, which is a whole story in itself for another time. The appointment was in the Internal Medicine department, as the psychiatrist is not at that office all the time. So we went in there to wait after checking in at the main desk. Janey was crying. She is scared of doctor's offices or anything that looks like one. I was holding her and trying to comfort her. She was a little loud, but in my eyes, no terribly so. It had probably been only 3 to 4 minutes when one of the three receptionist there came over to me and said (I'm trying to recall the exact words) "You'll have to wait in a different place. We have patients here and they can't have that kind of noise---she's too loud. She can't be here" It was one of the very, very rare instances I was so upset that I didn't use my internal censor that usually keeps me from saying close to what I think. I said "SHE is a patient here. She is here to see a psychiatrist BECAUSE of her anxiety and crying. There is no other place for me to wait. She is severely autistic, and I can't totally control her crying". Or mine either---by that point I was crying hard. The woman and the other two receptions jumped all over themselves to say they were sorry. I am assuming they thought that I was the patient, and I had just brought along my bratty kids for fun. I really hope they didn't know JANEY was there to see a psychiatrist. And even if they did, I can't possibly imagine how her crying would disturb patients, who were behind heavy doors and in their own rooms. And even if they did want her gone, they could have handled it a million better ways, like saying "Poor thing, she's having a hard time. Can I find you a place to wait where she would be happier?" What they did do is take us to a couple chairs far, far into the bowels of Internal Medicine, like a tiny waiting room for the psychiatrist. I sat there and cried and cried. I couldn't stop. I am sure I looked crazy, but I've always felt like a doctor's office was one place where I would be exempt from the stares, the angry looks, the judgements that keep parents of autistic kids from leaving the house much. I guess I was wrong.

I am trying to figure out if I should write a letter or make a call about this. Everyone says I should, but honestly, I don't think it would make much of a difference. It's how life is. What made me cry, I think, is realizing this is my life from now on, and worse, Janey's life. She is going to live her whole life in a world that has little understanding of people with mental illness or retardation. Maybe some parents would see that as an incentive to take on that world, but that's not me, at least not directly. I will protect her, keep her as happy as I can, but I'm not going to fix the world.

The Good Part

There aren't that many good parts to autism. There are MANY, MANY good parts to Janey, but these are despite the autism, not due to it. Yesterday, however, was a small rare exception. We were all tired out from all the heat and didn't feel like cooking, and it was getting late, so Tony decided to get Burger King for dinner. We almost dreaded asking the boys what they wanted---everyone in our family is passionate about food and highly opinionated, and usually any food-related decision results in lots of arguments and fierce debate. I guess this time they were just too hungry to do that, though, so they fairly calmly just told us what they wanted. Then we told Janey we were going to get her chicken nuggets. You would have thought we said we were giving her a million dollars---she literally danced around the house with excitement. She came with us in the car and just was so thrilled the whole way over to the Burger King. We had been talking about cheeseburgers and she said "Want cheeseburger!" Tony said "You want a cheeseburger AND nuggets" and she echoed "Cheeseburger AND nuggets!" When the order came, she yelled out "I want KING NUGGETS" I don't know if that was from Burger King or if she remembered they were shaped like crowns there. We gave her them in the car and she was on a total high---it was like Christmas for her. I got thinking---this is nice. She doesn't expect the minor treats in life---she's not able to think that far ahead. But when they arrive, she doesn't modulate her feelings---she can get just as excited over the nuggets as she would over some major present. She doesn't argue with us over what we are going to do---she really can't. She certainly is often unhappy, but like the happiness---it's in the moment. I'm not going all "trip to Holland" here, but after dealing with boys who are highly verbal, extremely interested in debate and emotional, it's at rare times kind of nice to have Janey---thrilled to just have chicken nuggets.

Never know when it will hit you

Today was mostly a very nice day. Janey and I went to the library, where she played for a bit in the children's room while I looked for books for her (and only freaked out when I showed her a book by the Maisy author that wasn't a Maisy book---that was a bit much for her, but I took it out secretly anyway), and then we went to Chipolte with Freddy, and Janey was an angel there, after it being such a horrible scene a few weeks ago---she was as happy as could be, and ate well. She was even happy when I went to the Savers after that to get Freddy some school clothes. She has been a sweetie.

So what hit me? I started reading a book called Not My Boy! by Rodney Peete, an NFL star whose son was diagnosed with autism. It was about how he came to terms with that. There is of course all the awful early scenes with people saying his son is unteachable and low-functioning autistic and it's all so upsetting. Then gradually as I was reading, I realized that his son, who was 4 in the part of the book I got to, was FAR ahead of Janey---answering questions, writing letters, reading some, explaining what a fire engine was used for in one pivotal scene, etc. And I thought---and they think HE is low functioning? And I started thinking about how little Janey really can do---she's about as far from answering a question like how a fire truck is used as she is from flying to the moon, if she ever wrote a letter, it would be a day of all days...and I got thinking about her, and my friend's daughter, and all the other kids out there with autism who don't even seem to fit into the autism world anymore---the non-success stories, the kids who have "got it bad". And yes, I'm not supposed to think like that. And I'm not sure why it hit me so hard this particular day. I don't read a lot of accounts about autism, and this is a well written nice one, but I don't think I'll read any more for a long time. I start thinking not nice thoughts like "what have YOU got to complain about?" and that is not helpful to me or anyone. And I'm just thinking---autism really is a rotten thing to have. I don't mean Janey is not a joy, a wonderful girl who many times a day makes me very, very happy. But it's not fair to her. Why should she be autistic and retarded? Where is that fair? And the grownup voice inside always says something like "Life isn't fair. Think of people who have lost children" And I do. And I can't even think about it, it makes me so sad for those people. I haven't lost a child, I have her. But life is going to be hard for her. Now is probably the easier part. She is a beautiful girl, and I live in terror of that---of the world out there that takes advantage of beautiful girls, the world that values smart and self-assured and hip, a world that pays a lot of lip service to including all, but can't even find the funds for a single bit of respite, or after school care, or can't field a camp that can handle her. And I need to stop crying.

Wasted money, discouraged

I did a lot of research the last few days, trying to get ideas about good toys for autistic kids. Janey has very few toys that engage her, and I would love to find some. I read a few places how some kids like the Vtech V-Motion. She's interested in video games, at least in trying to get in on ones the boys are playing, although she can't figure them out. I thought it was worth a try, so bought her one and one game (Wonder Pets). The console wasn't that much---$40, but the game was another $15. She had less than zero interest. She didn't get how the motion sensor worked at all. You can set it to use the joystick, which I tried, but she wasn't into it much that way either. Part of it I think is the horrible graphics. I don't know why that kind of system is about 20 years behind "real" systems. And part of it is just that all of a sudden the game demands you do something like figure out what letter or shape to use, and she can't do that. I wish there was a game JUST FOR HAVING FUN for her age---one with decent graphics, where she could move a controller to drive a car around, or explore. I think she's be able to figure it out. Oh, well. I also got her a big mushy ball with pocky rubber spikes, and she likes that, and I got a bunch of Mister Potato Head stuff, which engaged her for about 15 minutes (with me right there of course, egging her on). And there went most all of the money I managed to make working all week on ebay. I wish I had more money. Don't we all. It just seems so unfair sometimes thinking there is ANYTHING out there that could help Janey that I just can't afford. I know that is life, but sometimes I wish life wasn't like that. I would love to get her an iPad. I think she'd be able to figure that out easily, with the touch screen. I'd like to get her a whole huge amount of sensory type toys, fill a whole room with them (if I had an extra room). I'd like to find the perfect camp for when she's a little older. I'd like to be able to even afford after-school at her school. I'd like to be able to get her extra nice clothes. I wish I could afford a babysitter, but with that wish I also would have to wish I KNEW someone would would babysit her for pay. As you can see, this is a dreaming session. I just felt so fed up today with how I chose to spend the little money I had on something that seems like a waste now. It might work for her someday. And it's just money. I'm just indulging myself in self-pity here. Hopefully anyone reading has given up on this post by now, so they don't have to hear all this! But if you didn't, I should say Janey was quite sweet today, good at the ToysRUs, cheery even if she didn't want to play anything, looking precious. So I can't blame her for my rotten mood!

Summer

The last week has been fairly tranquil. Janey is calm most of the time. I'm not asking much of her---I'm getting into my default hot weather mode, which is going no-place and doing nothing. I HATE hot weather and it's been a hot summer. Janey has been watching more TV than I'd like, but she likes it and is really reacting to it---not just sitting there staring at it, but laughing and playing close attention to her favorite parts. We are working on workbook pages and papers the school sent home a lot. Janey will try if I have M&Ms. She is getting pretty good at tracing paths, like when the paper has a little maze to follow (but not really a maze, as it's all the right way). I am trying with letters, but I don't think she gets them at all. Numbers are a little more promising. Shapes still a struggle. Her best area is naming things, like when there are pictures on a page. IF she knows she might get a reward, she'll name all kinds of things. She often just uses the name of the last thing I showed her, though, if she's not really trying---like I'll show her a pig and name it, and the next thing is a table or something and she'll say pig. It's frustrating. It makes me feel like I'm trying to get her to do a party trick she really doesn't get. Her talking has lessened again lately. It's mostly all the old mold---"I want...." She fits everything into that mold, creating sentences like "I want turn off the light" "I want I will get you that"---meaning she wants me to turn off the light or she wants me to say "I will get you that". Sometimes she emphasizes the "I" part with pointing to herself.

I think she does a constant monitoring of the areas she wants to explore. If I leave the fridge un-bungee-corded for ONE SECOND, she is there taking things out. She checked the door to the hall many times an hour, as she does the bathroom door---she very much wants to start a bath for herself with her clothes on.

We had a very delightful day last week. I had everything locked, and I knew she couldn't get away, but I looked away and couldn't find her when I looked back. I checked everyplace (and we have a sadly small apartment) and didn't see her. I was starting to panic, although there was literally no-place she could have gone. I looked again and found her where I hadn't looked the first time---in the cat litter box. Like it was a sandbox. I admit I screamed at her. I think it's the first time I all out screamed at her. I am not a screamer. But I was so worried at not seeing her the first time, and so sickened by her thinking that was a place to play, and so annoyed as I had just given her a bath. She was very upset by my screaming. I was surprised it affected her so. She looked so sad. I gave her another bath, of course, the bath of a lifetime. During the bath I asked her more times than I needed to to tell her she was sorry, which she did. Afterwards she wanted me to hold her for a long time. I talked to her about not going in the kitty litter box, how we NEVER EVER EVER go in there, etc. She hasn't been back. I hate screaming like that. But I guess it was a natural reaction and probably did make an impression.

Worn Out

The screaming is still mostly not happening lately, which is wonderful. It's been replaced, though, by a sudden desire to escape. Janey is drawn to any unlocked door. She wants to go up and see her uncle, who lives upstairs, every minute of the day. We have to keep the doors to our apartment, one of which leads to front stairs and one to back stairs, locked at all times, with chains also. Janey is studying the locks and chains, and I think will soon figure them out. We have put hook and eye bolts all around too. It makes getting out of the house a long process for all of us. We are lucky our doors don't open directly to outside. That would terrify me. She also is drawn to the bathroom---she wants to go turn on the bath water or the sink water and play in it, so we are bolting that door too. Even with just the rooms she has left, she finds many ways to keep the day hopping---she will take everything out of the fridge, so we bungie cord that shut, she likes to take silverware out of its drawer, and we need to figure out that one, she turns on and off lights all day, she tries to use the remotes and leaves them all around the house with the TVs and video games in a state of random on or off and with all sorts of reconfigurations. She still sometimes puts random things in her mouth. She woke me this morning by ripping the pages out of a book in my ear. I literally have to watch her every, every, every second. I would be reading this if I had a "regular" kid and thinking---every mother should do that. Well, you don't have to in the same way. You can read a book while they watch TV, you can let them play with toys in one room while you are in the other, you can doze a minute on the couch if you are very tired. I know---I had two more or less "regular" kids that age. It's nothing the same. It's a constant state of alert. I've taken Janey to friends' houses in the last week or so and they have admitted they are exhausted when I leave, and that's with me AND them watching her. I've been lying in bed worrying about school. I picture her opening the door constantly and taking off down the hall. I know that she is watched very, very well at school, but I still worry, as I do any second she's not right next to me. I think part of it all is that she'd rather just do something for herself than ask me---that's usually a lot easier for her. She is better with her hands than the boys were at her age, because they were askers---they asked me to do what they needed done, probably more than most. Janey just goes ahead and tries to cut cheese up, or spread butter on bread, or go for a visit upstairs---asking is too hard. I am so tired. I need a break. But my mental state is still much better than it was during the "screaming time". So somehow I'll get through the summer.

Beach Time

I'm up early, and was browsing around the internet and reading some blogs that other blogs linked to and such. Sometimes this gets me down. I feel like a lot of bloggers that write about their children with special needs have it all so together. Maybe it's because a lot of them are religious. They are very confident it's all part of God's plan. I don't have that comfort. I wish I did, sometimes. I know it might make things easier to feel like it's part of plan, like there is someone guiding me through this. But at this point in my life, I don't feel that way. I feel like all decisions are mine to make, and if I make them wrong, it's not because there was a reason for that in someone's plan, but just because of poor decision-making or bad luck or just random chance. Anyway, that's more of a side note.

As you can see from the picture, we went to the beach yesterday. It was a great time! I was comparing it to other beach days last summer or before with Janey that were very tough. She has always enjoyed the beach, but in the past showed her enjoyment by running away from us as fast as she could over and over. This time she actually stayed with us and calm enough of the time so that we could enjoy ourselves without watching her intensely every second (just every other second or so) Freddy watched her for a bit and both Tony and I got out in the water and swam, which we both like a lot. Janey dug some holes, and walked around along the edge of the water and generally had fun. At one point she said "I want to jump in the puddles!" which is something she says a lot, but she meant jump in the water, and it was nice to be able to say "You can jump in this big puddle ALL YOU WANT!" She picked up sand and held it and felt it in her hands, and dropped it and picked it back up and all the things she likes to do with dirt but usually can't. The beach is really an amazing place that way.

And of course I'm thinking about and wondering if it's the medication that is helping her be able to enjoy things. And why should it matter? But I feel somehow like it's the easy way out---like if I had done a better job making her happy without it, she wouldn't need it, and all the possible bad side effects on her growing brain. And I curse myself for thinking that---she is most certainly happier the last week or so than in years---not a frantic manic happy, but just able to in general enjoy things---and I think more open to learning, using a little more speech, making longer sentences---so what's the problem? It comes back to that feeling of responsibility, and also my own OCD type feelings that something good has to cause something bad. Like if it's easy, it must be wrong---that you don't get real help from a vial of medication. And of course I don't know if that's all that is working. It could be other things---she is out of school, and maybe school was harder on her than I realized. She is spending more time one on one with me. We are adjusting our lives more to her needs---the things we are doing are based on what she can handle and enjoy---not that we always didn't take that into consideration, but I think now it's the key factor in everything we do. And things certainly aren't perfect---she still has meltdowns quite often when she's tired, or overwhelmed, or who knows why.

So I should probably stop writing and get sleep while I can. And just be grateful for nice days like our day at the beach.

Holding my breath

I haven't written in a few days, because of my extreme fear of jinxing things. The last 5 days or so have been pretty good! Janey hasn't been screaming or crying much at all. I think the higher dose of the medication is working, or something is working. She just seems happier. When she starts to get upset, it's much easier to get her back and calm her down. It's so wonderful to have a day without extended crying times. Along with the medicine, it might also be partly just adjustments we have made. I'm backing off some on taking her out many places---I think she needs some time mostly at home, very predictable routines. Not totally, but a lot of the day very low key. My parents were here yesterday and got to see a calm Janey! (and hear our stories about the awful time a few weeks ago) We went to see my friend Fab a few days ago and Janey was happy almost the whole time, and saw my friend Amy a bit ago also and had a very good time, and got to see Janey playing with her daughter, and actually talking back and forth a bit (with her confusing reversed pronouns---they were playing with a water squirter and her daughter said "Do you want me to squirt you?" and Janey said of course "Squirt you!"---which reasonably the daughter replyed "She wants me to squirt myself!") The nights have featured pretty good sleep, and overall it's been a nice stretch!

As for talking and so forth---I feel like it's been reasonably good. But I think I only compare Janey to herself. When she says something I haven't heard before, or does something new, I get very excited. Sometimes the people around me seem a little perplexed as to why I'd be that thrilled to see her doing something most 2 year olds probably do with total ease. Yesterday she asked for water "in a glass"---she always adds that, I'm not sure what she thinks we usually give her water in---and then glanced at the fridge and added "ice---want ice" which I thought was a great sequence---asking for something, and then adding on an appropriate phrase. But I realize that's the kind of talk probably most 18-24 month olds would handle with ease. The other day I asked her to draw a circle, and she drew something definitely round. I was so happy. I realize lately after the horrible crying times, I think something changed in me. I stopped thinking as much at all about her delays and autistic behaviors. Not completely, of course, and I will think about them again many times, but for now, if she's happy and making even very minimal progress over her own past marks, I am happy. I'm only holding her up to herself. Tony is feeling the same way. It must be a landmark for a lot of parents of children with retardation---the moment you realize that your kid is your kid---they have their own measuring stick and it's not the same as other kids, but you can still feel happy about the tiny steps they take, and laugh with them at funny things, play with them at their own level, find joy in what they enjoy, etc. I'm being uncharacteristically cheery and maybe a bit Pollyannaish, but for once I will let myself be that way.

Highs and Lows

Yesterday was a perfect example of the highs and lows of life with Janey. During her non-screaming times, she was quite a joy---engaged, smiling, cuddling, resourceful and happy. She asked for things in a complete way "I want some big yogurt right now" "I want some Ovaltine milk in a baba with strawberry" "I want to watch Bob the Builder" (which she's never watched before that I know of, and which she had no interest in once I found it on instant Netflix). She brought me everything she thought I needed to get her wants met (the yogurt and a spoon, assorted remotes, etc) She said several times "I want to cuddle on Mama's bed". She talked about her love for the legendary rainbow shirt "I love the beautiful rainbow shirt". All nice stuff. And then, we'd let our guard down---and the other Janey would emerge.

The boys wanted to go to Chipotle for lunch. That's not news---they would eat there every meal. Janey was having such a nice day, and she usually like it there a lot. So off we went. She was good in the car, we were all having fun. We pulled into the parking lot and suddenly it hit her we might be having a notion to go to a restaurant. She started screaming. We kept telling her it was Chipotle, her favorite place. She kept screaming. We went in---there was a line. She screamed her signature scream---so loud and intense that every single person in the place was starting. That wasn't my imagination---that was the truth. The man ahead of us in line gave me a look like he wished he could kill us all on the spot, and simply walked out. That's the power of Janey Scream. The boys were very upset. I said I could take her out, but I had the plastic to pay, so they would have to use their own money. They didn't have enough. I decided to last it out until I payed, and take everything to go. The next 5 minutes were hell. She lay on the floor, kicked, took off her Crocs, tried to bite herself---loads of fun. When I was paying, the cashier tried to give her a bag of chips. That happens everywhere we go when she's screaming---people try to give her things. It's a nice impulse, but it never works---she throws the things, or pays no attention. The people almost always react the same way---they shrug their shoulders and say "I tried..." For some reason that bugs me. It shouldn't, but it does. So we finally got out of there, got to the car, she screamed most of the way home, but calmed down in times and we had a good afternoon. But because I'm a glutton for punishement....I wanted to go to the Savers (thrift shop) last night. Tony decided to come along, and that meant Janey too (William can babysit, but we are avoiding that lately as she's so tough). Usually the Savers works out---but guess what? Not this time. She screamed the minute she got in there. Tony tried walking around with her, keeping her busy, but there was no way I could shop hearing here, and thinking about how all the parents there were thinking "Why in the world do they bring that girl in here?" and I'm saying to them in my inner dialogue "Okay---you want me to never leave the house? You want her behind closed doors at all times so you don't have to hear her?" and getting myself all worked up. Tony took her for a walk outside, but I couldn't shop much more---I checked out and left. This time she screamed all the way home, at home, for about an hour. At one point, she actually said "I want my crying medicine" which is what we have been calling the Risperidal. I think she hates that out of control feeling. Once she calmed down some, she said "I am angry!" And she is, I am sure, and sad, and lots of other feelings she can't explain.

Today Tony is going with William to the orientation for a summer transportation program William is in. So another day to try to get through. I think today I'm staying home.