Sign Language and some complaining

We've been trying a little to teach Janey some signs. I resisted it for years, because I think I felt since she COULD talk verbally, that is all we should encourage. But the verbal talking is not making a huge amount of progress, and she was signing "more" all the time after learning it at school. I found a good web site that shows little videos of each sign. I think it's something a lot of people know, so it should be easier to co-ordinate with school than some things. We'll see how it goes.

I'm very happy to have met another woman with an autistic daughter through this blog---thanks, Michelle! It's so wonderful to talk to someone else that has been through a lot of this!

I'm also happy that Janey is starting music therapy at school. It took a long time to get it started, but I really like the therapist and I think it will be helpful.

To be less positive for a minute, I've been thinking about how much more parents with tough kids like Janey need support and breaks and time off, and how much harder it is to get that than it would be for parents of "normal" kids. It's an example of something that should be MORE available being actually LESS available. If Janey were mainstream, I could easily find a day camp, swimming lessons, dance lessons, music lessons, day care, etc. Paying for them might be an issue, but FINDING them wouldn't be. But as things are, it's so very hard to find such classes or care, and if I do find them, they cost much more than they otherwise would. I don't think people sometimes realize how hard just a regular day is with Janey. Imagine taking care of a child that does the kind of things an 18 month old would do, so you have to constantly watch them, but they have the physical abilities of a 5 year old, so it's even more dangerous. Then imagine you have no reliable way to talk to them, and that they are prone to suddenly have a tantrum or start crying at any moment, and you have no idea why most of the time. Then imagine that that is your life, all the time, and there is almost never a minute off. And imagine you love that child more than anything on earth, and want the best for them, but half the time you are too darn worn out to do all you think you should for them. And imagine you have 2 other children, and a house to take care of, and bills to pay. That's my life. And I like my life, most of the time, but I just wish I could get a break once in a while. And I am luckier than most, with a very supportive husband and good friends. Okay, enough complaining.

School show, lessons learned

My daughter's school puts on a lot of shows---it's one of their trademarks. There was one on Friday. To be honest, I was kind of dreading it. I love the shows, but sometimes feel like the kids with special needs don't get as much out of them as the regular ed kids. I don't think Janey really knows what a show is, or gets that she is on stage. However, I felt like a few interesting concepts got formed in my mind watching this one.

Janey was happy on stage, but clueless. She didn't sing the song, although she probably knows them all, she didn't do the hand movements, she didn't really participate. A great high school student was with her, and encouraged her. She had a chair to sit in, although the other kids all stood. But she did cute things---she clapped when the audience clapped, she hugged the student at one point, she looked adorable up there. I noticed a lot of people in the big audience were watching her and laughing (nicely) when she did cute things. It made me think of diversity in a good way. Most of the rest of the kids were "with the program". They did as they were supposed to do. And it occured to me---is it really that bad that Janey didn't? She made people happy watching her, she was happy, she enjoyed herself. For someone like myself who hates to stand out, it was sort of inspiring in a strange way. She was herself, and she is always going to be herself.

Seeing the kids with Down Syndrome perform was wonderful. They did so well. I think inclusion is perfect for many kids with Down Syndrome, and I was struck as I often am how so many kids with that syndrome are just great kids. Not all of them, of course, because they are people and people vary, but many of them. And on a more low key note for myself, how very far ahead of Janey most of them are.

A lot of people told me how happy they were about seeing Janey. And she was a joy to see---so very beautiful, so happy in her own way. I have to admit I'd probably give it all up to see her be like so many of the kids in her class---academically bright, talking up a storm, futures so bright they have to wear shades---but still....Janey has her own things to offer.

Anyone out there?

Lately I have really been craving contact with other mothers (or fathers) of autistic girls. I have been searching for a support group in Massachusetts especially for parents of girls with autism, but none seems to exist, and I can find very little on-line either. They say 1 in 4 children with autism are girls, but I don't know where they all are. Information I do find seems to be about girls with Aspergers or high functioning autism, which is not like Janey. I think autism is different in girls, and it would be great to have someone to talk to about that. I really don't know who reads this blog, except people I have told about it. If you do, and would like to connect, please leave a comment, or if you would rather, email me at booksandclothes@gmail.com It would mean a lot to me.

Janey has been fairly cheery lately, but I have worries her talking is decreasing. Lately I only seem to hear requests type talking "I want Winnie the Pooh" "I want ice cream" and nothing else. And at times it seems like it's harder to understand her---she always spoke clearly in the past. I really don't know where to turn sometimes. I feel like it's a slow acting emergency---I can't take her to the emergency room and say "I'm losing her!" We are extremely tight with money, and so many things that would help cost money. I need to start calling clinics and hospitals and just make appointments, but I worry so about the co-pays and deductables.

I've been feeling frustrated with talking to Janey in the car and other times. It seems like I keep up a monologue all the time and I don't know if it does a bit of good. I don't know if she is processing anything I say. Should I just shut up and give her some peace and quiet? I talk constantly to her. It feels right to do that, and that is what I did with the boys, and they are quite the talkers and have great language skills. But does it just overwhelm her?

I hope 2010 is a good year, one where I get some answers and Janey makes some progress.

Christmas/end of year

The end of the year always gets me thinking about progress, and wondering what kind of year it was for Janey. I can't say that overall she made much progress this year, which is probably why I am feeling pretty low today. Her talking isn't better---it's maybe a little worse, except for the rare times she goes on one of her talking frenzies, which is usually when reading a book to herself (she doesn't read, but she tells the story) or when singing to herself. She isn't that much happier, although we are getting better at knowing what is bothering her, or at least we have a list of things we check now---is she hungry? Bored? Tired? Constipated? I think I figured out she is tired much more easily than we realized, and she is going to bed between 6 and 7 most nights. She is in a wonderful classroom and getting a lot of very good support, but I don't think it has really shown itself yet. One area that seems a little positive to me is her interact with other kids. A few mornings when we got to school early and she was playing with kids outside the school, she seemed much more at ease, smiling and laughing and obviously very happy with them. I observed a few other kids there I know are on the spectrum, and the difference was quite obvious. It goes along with me sometimes thinking she isn't really autistic, but something similar. We had a lot of testing done through a study we joined, and that was very depressing in terms of showing her abilities on a testable scale---she is most certainly at least moderately retarded according to that. She hasn't learned letters, numbers, colors, shapes...all the things I've been wanting her to learn for years.

Christmas brings sad feelings to me in a way. Every year I tell myself that maybe next year, she will be able to anticipate Christmas, will be eager to hang her stocking, will understand what presents are, will ask for things....just doesn't happen. But she was mostly delightful this year. She loves carols. I played a carol CD in the car every day for a month and a half, and she learned most of them. One day, when I played the Halleluiah Chorus, at the end of it, she clapped loudly. I would look at her in the rear view mirror during the songs and see such sincere happiness in her eyes. I felt like it was a time we really connected on the same level. On Christmas eve, she came up to me and said "I want to go to the streets of Bethlehem". I know she didn't understand what she was saying, but I think somehow she connected the holiday with the songs, and heard that Bethlehem was a theme. It certainly brought tears to my rather non-religious eyes.

I think we got a little more accepting this year. I think we realize she isn't ever going to be exactly like other girls, but she is a wonderful girl, and if we work on figuring out what makes her happy and on understanding her needs, all of us will be happier. Best wishes to all for 2010.

Surprises from Janey's mouth

We have to be so careful with everything we say, because although Janey doesn't say the things we want on command, she listens to whatever we say to find words that have a ring she likes to them. The other day, Tony was telling a story about what some women said when he went out with a bunch of people from his high school class. They were describing themselves in high school, and used a colorful phrase. Janey was somewhere around, but gave no indication of listening to the story. However, this morning I was still in bed, and she came over and looked me in the eye and said "Crazy b*tch". It was a bit startling, to say the least. At first we felt worried, like perhaps she had heard that from someone talking to her being mean, but then we remembered that conversation. But how she realized it was a phrase that could shock, and why she decided to use it on me---who knows? Yesterday she made it through about half an hour at the buffet restaurant we went to for Thanksgiving, then I drove her home before she could freak out and ruin many people's meals. On the way home she was crying, and I asked her what was wrong, more just to make conversation as she never will say. But this time, she said "Willy is a naughty boy". I've never heard her call William Willy before, and I've never heard her say naughty, and I don't think William did a thing naughty during the meal, or really interacted with her at all, but somehow, that was her answer.

Long Week

The last week was fairly tough. Janey was having a bad week---awake in the night crying, not talking much, upset all the time. Things weren't going well at school either. Finally Friday I kept her home, just to give the teachers a break and to let her do nothing all day. It seemed to break the cycle a little. The school called mid-day, actually the woman who is her ETF, to talk about how she was doing. They all had been concerned about her mood swings, and I had finally mentioned something about it in a note to school, and now they all wanted me to call Dr. Marshall, her pediatrician, to ask him about having her evaluated for bipolar disorder or manic-depression. I did call him, although it was a hard call to make, and I have numbers to call tomorrow of two psychiatrists. I have thought deep inside for a while she might have something like that, but it's along with the autism and the retardation, so it's going to be hard to diagnose and treat if she does, and I am still not feeling very up on medication, which confuses everyone as I've always been someone that believed in medication. But Janey is only 5, and I have had some bad experiences with drugs I felt were carelessly prescribed, including the Aldomet during my pregnancy which I truly feel is the cause of many of Janey's issues, if I might be totally honest. Also Freddy's racing heart and possible drug induced Long Q-T syndrome after his bad asthma attack. So I am not going to trust a doctor on medication unless I really look into it quite a bit first. And I also don't know how it can really be separated---does she get upset because she can't explain what's wrong? Can she not explain what's wrong because she's upset? I feel sometimes like people want other people on medication because it's a way to feel like something is being done, and if you don't do it, they can kind of say to themselves---"Well, she won't let them give her medication, so she has only herself to blame if Janey is that tough"---which is hard on people, but as I've said lots of times, here is the only place I pour out my heart about autism issues.

Then yesterday we got a Fex-Exed report from the Mass General study we have been in, about Janey's testing. Talk about a downer. Pretty much, she tested as low as you can test on almost every aspect they tested--- less than the 1st percentile. I think they were using a test for "normal" kids her age, and it really couldn't even test her, she was too low functioning. Even areas like her receptive language that I had thought she did fairly well on, she really didn't. It was a little bit of an eyeopener. It is making me think we need to rethink how she is being taught and what our goals should be. I am starting to think her learning things like colors and numbers and so on is not really a realistic goal. I've thought for a while that her speech is a little deceptive---because she does talk, but mostly in set phrases and delayed echolalia, people think she has more potential than she actually does. I think she talks as much as she does because we are all huge talkers, and that is where she gets constant stimulation---verbal areas. If it weren't for the residual speech she has, I think she would be seen more realisticly---as a child that probably is moderately retarded and needs to mostly learn life skills. And I think she could do well learning those, and perhaps someday some very basic academic skills.

I am facing the things that are toughest for me---being sure of my own convictions and not being swayed by the disapproval of others of the routes I might choose to take with Janey. I know that I know her better than anyone, I love her more than anyone except Tony, and I want what is best for her. So why is it so hard for me to just be sure of myself in terms of what I choose to do with her? No-one else lives with her day and night. If I ever have enough belief to say prayers, it will be prayers for the courage of my convictions.

When we really connect

I love it when I feel like Janey and I really connect, really share a moment together. The best time for that is in the car, when I play music. I made up a CD of Christmas songs, even though it's a little early for that, and prepared for her to freak out the first time I played it, as she usually does, but instead she was so happy. None of the songs were totally new to her, which helps. I look at her in the rear view mirror when she is enjoying music and we look right at each other and smile. I feel like it's one of the few times we connect with each other without having to talk. When we got out of the car, she was already singing "Hark the Herald Angels Sing". Of course, tonight she got singing it again and got "stuck" on it, something that hasn't happened much late, when she is singing something and can't stop although she obviously wants to, and she get more and more upset.

The other night, she asked me for a necklace,which surprised me as I didn't think she knew that word. I gave her one and she put it on and said something like "Oooh..." which doesn't sound like much, but she said it in such an engaged tone, exactly like a woman would say that if she put on a dress that looked just right or something. She was so happy in such a "normal" way. She went and looked at herself in the mirror for a long time. That is an area where she is probably more mainstream than me. She loves to check out her clothes, hair, accessories, in the mirror, and turns around to see how it looks from all angles.

She gets very upset every day right when she gets home from school. I remember my mother saying my sister used to do that too, like letting out all the tension of the day. I try to be understanding and have food ready and give her all my attention, but I think she needs to freak out a little anyway. I would not think of school as being tension-filled for her, but I guess it is.