Tougher, the same as and better

Janey will be 11 soon, and I've been reflecting on what 11 is like for typical kids, what 11 was like for me.  It's not the easiest age for any girl, I don't think.  It's typically the start of middle school years, around the start of puberty and of girl on girl meanness and on starting to notice boys, the age of questioning your parents and figuring out who you are.  I think a lot about ways that life with Janey is, all at the same time, tougher and the same as and better than with most almost 11 girls.

The tougher part is quite obvious, of course.  It's a lot of what I write about.  It's tough to have a girl her age who isn't usefully toilet-trained, who is minimally verbal, who has no academic skills, who screams and bites herself when she's upset.  It's terrifying, as we found out, to have a child who can't tell you the most basic things that are wrong physically---who can have a burst appendix for days that even doctors at a top notch hospital can't easily detect.  It's sad to not ever really know what Janey's life at school is like.  It's very hard that she doesn't have friends.  It's heartbreaking that her future is not going to include marriage or a career or children.  All that is, putting it mildly, tough.

Some parts of Janey at this age are really not that different than having any almost 11 girl.  That hit me this past weekend at the beach.  Janey loves the beach, and she ran in and out of the waves and picked up shells and just had fun in a way that was truly not that different than anyone else her age.  Of course we had to keep an eye on her, but we would be keeping an eye on a typical girl that age in a public place.  Her enjoyment of the beach was not because of her autism, or despite her autism---it was just enjoyment.  When we all sit down to eat Chinese food or pizza, she is no different than any sister in a three kid family.  She grabs her share and we all gobble down.  There are moments when I look at the three kids in the back of the car and think "There's my family!" and don't think for a minute about the autism.  That might not seem like a big deal to most people, but it's a wonderful kind of ordinariness to me.

And there are the parts of Janey at this age that are better than what I think life would be like with a typical almost 11.  Yesterday after school, I put on some Beatles while I did dishes.  Janey was in the kitchen with me, and she delighted in the music.  She delighted to such an extent that she was truly in a state of bliss.  We listened together to "In My Life" 5 times, as she kept hitting repeat, and as tears came to my eyes, she hugged me over and over.  Then we danced to "Birthday", the theme song of her shared birthday with Freddy.  I thought about this birthday to come, when my baby will be 11 and her brother Fred will be a legal adult, 18.  I thought of the moments of joy with Janey, and how she will in some ways always be my sweet little girl.  The joy with Janey is pure and overwhelming when it happens.  Those are the moments that keep us going.

Hope and Holiday Blues

First the hope.  Yesterday, we visited a respite house a few towns over.  Janey's first grade teacher had told us about it, and I did an online application and got an email inviting us to visit.  It was wonderful.  The house is on a college campus, and is all set up for being a place for children and adults with disabilities to spend time and have fun.  There is a great rec area, a fantastic kitchen and a floor full of dream bedrooms, for overnights they sometimes have, and a lot more.  And best of all, they actually have openings!  Janey started the tour by freaking out of her mind, screaming hysterically.  So they got to see that.  She calmed down quite quickly once she saw some of the great things they had there, and tried every bed in every bedroom and by the end was hugging the woman who works there who gave us the tour.  We signed her up for two Saturdays this month.  One will be a trip to the Children's Museum, and another to a local beach.  We are holding our breaths---it almost seems too good to be true.  It's exactly what I had wanted, and even wrote about, and it actually exists!  There are scholarships available, but if we can't get one, with a little belt tightening we can manage---it's not crazily priced.  There are 6 overnights a year for girls, and we might even try one of those next month, and there are vacation week camps!  I keep thinking something will go wrong, or Janey will be too much for them to handle, or SOMETHING---it really feels like a dream.  I'll write more about it after the 12th, when Janey goes for the first time.

The holiday blues---that was today.  It's the 4th.  Tony and I felt a little down all day, and talked about it tonight.  Lots of reasons, but a big one is the isolation that having a child with a disability brings, especially on holidays.  Gradually, we have stopped going almost anywhere.  When we used to go sometimes to cookouts or the like with family and friends, it was almost always a disaster.  Janey would get hysterical, and we couldn't stay long.  Most all of our friends and family now also have littler kids around---grandchildren or kids of their own.  We can never be sure how Janey will act, and I think there is fear on both sides about that.  We don't reach out to go places, and we don't get invited, probably because people know we wouldn't go anyway.  Even if somehow Janey acts perfectly, we are still on edge.  We can't ever relax.  Someone has to be following Janey at all times, within an arm's reach, especially at other people's houses or public places. And so we stay here.  And usually, we are okay with that.  We aren't hugely social people.  But on holidays, sometimes it feels a little sad.

We were planning a family trip to a beach tomorrow, but talking about it tonight, we decided to make it just Tony and the boys.  The beach is quite a drive, and once there, it's not like we can all have fun as a family.  I want the boys to have relaxed, fun, happy times with their father (and with me) and if that means us not all being together, it's better than just skipping the outings.

The two themes tie together there.  If the respite works out, and Janey can have fun, and be a place where there is paid staff and volunteers that are there just to take care of her and the other kids, then we can have some time with just the boys.  We can relax a little, but it's bittersweet.  It's not a full family without Janey.  I had a moment just before going into the respite house of an overwhelming feeling of sadness.  I was so happy to be getting a chance to see about the respite we've craved, but it felt sort of...I don't know the word. They start taking kids at 8, and I guess that's because that's an age where you know it's not something the child is going to grow out of.  This is our life, this is Janey's life.  We are at a point where we need more help than just home and school can provide.  And in a way, that breaks my heart, although I am so happy there are wonderful people who will be able to give us that help, and give Janey a great time at the same time.  But it's not normal family life.  Or maybe it is---"regular" kids go to activities and sleepovers.  Janey will be able to also---just with a little more support.  Maybe I think too much about things.  Maybe I am overthinking this.

Either way, Happy 4th of July to all my USA readers, and happy start of summer to everyone!

What a difference a few days makes

Janey had a very tough stretch around her birthday. From about Tuesday to Saturday, much of each day was taken up by hysterical crying. It was awful, for her and for us. We really had and have no idea what was wrong. This kind of stretch seems to happen about three or four times a year. Thankfully, and knock on wood, the length of the stretch seems to be getting gradually shorter over time. But it's still almost impossible while it lasts. And then Sunday, Janey woke up happy. And she's been happy, most of the time, today also. I hope it lasts. It tends to, once she gets out of the sad stretch. She's not manically happy, just regular cheerfully happy.

And of course I would guess I'm not the only one thinking this sounds a lot like manic-depression, or bi-polar disorder, or whatever it is called now. Whatever it is called, I've read it is no longer diagnosed in children. And I guess I'm kind of glad of that, in a way. I don't need any more labels for Janey. I hope by the time she is an adult, she doesn't get these spells. But the fact remains that something sometimes makes her very sad for a while, and something sometimes makes her manically laugh all day and be very wound up and wild for a while. Whatever it is, it's enough of a pattern over the last 5 years so we can kind of recognize the moods coming on and going away.

When Janey gets happy after being sad, it's wonderful. We appreciate her all the more. Tony and I look at each other many times a day and we are both thinking the same thing---if she could be happy, nothing else matters---the autism, the retardation, the lack of skills like toilet training---none of it. She can be the most delightful child on earth. Tonight she was thrilled to "help" Tony with laundry, thrilled to eat a supper of hot dogs and cabbage slaw, thrilled to watch a Disney video WITHOUT singing that she had never seen before. Earlier today, she said to Tony "I want soda!" and he said "I want soda too" and then just to be funny, "I want soda three" and she said without missing a beat "I want soda four"! This afternoon, she said "I want to go to Va-Vere Beach, but that's silly. Maybe the weekend" I've never heard her say "weekend" before. I know she was quoting me, but it was still great to hear.

I wonder all the time what is in Janey's head. What drives her moods? What does she think about? How can I help make sense of the world for her? I just don't know. I'm going to keep trying to figure out, though.

A Day at the Beach

We went to the beach yesterday, and had a great day, overall. It's wonderful when we can enjoy ourselves while Janey is too.

I worked a lot on something they have been doing with Janey at school too---teaching her to come back when called. I let her run a bit on the beach, not far, but a little ways, because of the nice long visibility. Then I would yell out "Come back, Janey!" and nine times out of ten, she did! I gave her a high five when she came back, and said something like "See? If you come back nicely, you can run around more!" She seemed to get it. However, the one time out of 10 she doesn't come back is the killer, and in most places, there's a lot less visibility and a lot more things she can get into than at the beach. But it's a start.

Janey loves the water and the sand. She is fearless with waves---they wash right over her head and she just laughs. When we wanted to sit on the beach blanket for a while, she just sat sifting sand in her hands, mostly.

The ride to the beach on the subway was a little tougher. Janey hasn't been on the subway much, and the noises bothered her. It was interesting and a little sad watching how hard she tried to keep it together, but after a few stops, she couldn't. I talked to her about the noises, how they were normal and just the train moving, and she did calm down some after a while, but with some loud crying and screaming first.

When we got to the beach stop, she got upset again, and actually told me why! She kept saying "This is NOT Ve-vere Beach!" "I want to go to the beach!" The other times in the last few years we have taken her, it's been by car, and climbing stairs out of a subway didn't make it seem like we were going to the right place. I reassured her we would see the beach very soon, and when we did, she was fine.

My friend Maryellen and her daughter went with the boys and me for the trip, and that was perfect, as there was a variety of eyes to be on Janey if mine weren't for a minute, but no-one had full charge of Janey every single minute. If someone does, it's impossible for them to have fun and relax, but if I have primary charge but know I can get a break when I need one, it's great. I can enjoy the time with Janey, playing in the waves, digging in the sand and just watching her enjoy herself.

I guess my conclusion here is that it IS possible to have enjoyable days out with Janey. They have to be doing something she likes, there needs to be a big ratio of potential caregivers to Janey, you have to be prepared for meltdowns now and then, but although that sounds like a lot, it didn't feel like it. It felt like a nice, relaxing day, something I need to figure out a way to have more of.

Ups, Downs, All Arounds

Knock on wood, in many ways this summer is going well. Janey has been happy for the most part, and we have had some good times as a family---times where we actually all enjoyed ourselves without one of us having to constantly be keeping Janey happy. She was happy along with us. We went to the beach, we went to Janey's new favorite restaurant Old Country Buffet (which used to have edible food, but I guess they can't afford it any more, but Janey loved the unlimited bacon bits and Chinese dry noodles), we had some times just playing with the cats and laughing all together.

The biggest shocker is Janey using the potty MUCH MORE! Lately, it's like all of a sudden she figured out how to actually sit down and urinate. She could always hold in the pee, but didn't seem to know how to release it when she wanted to. As I kind of always figured it would go, she just does it on her own terms---walks into the bathroom and uses the toilet like she's been doing it all along. In the last 4 days, she's probably peed in the potty 10 times, which beats her previous lifetime record by about double. I hope it keeps up. I wonder how it will be when school starts, as she is not usually open to suggestions as to when to go. She just walks in and goes when she needs to, and I doubt she'll have an easy time telling teachers when she wants to go. But that's a worry I'd have loved to have a year ago.

Summer school seems to be going very well! I've continued my incredibly lucky streak with good teachers, and her teacher and the aides in her room seem great. Janey is happy to go each day, and can barely bring herself to look at me long enough to say goodbye when I leave.

The downs are mainly the couple hours after school, and before Tony gets home. The boys are in summer programs and so aren't there, and I am just plain worn out, from heat or not sleeping or other things. And Janey is in rare mischief mode. The other day was a classic. She took a jar of Cherry Kool-Aid, almost brand new, and proceeded to try to make some Kool-Aid for herself by pouring it into (dirty) glasses and pouring soda into the glasses, in the brief time between when I looked up to see her happily watching TV and when I looked up a minute later to not see her. I ran into the kitchen and was met with a scene that looked like a crime scene---gloppy wet piles of Kool-Aid powder everywhere, Janey covered from head to toe. She is incredibly quick. I did a few experiments lately with faking looking away, and she is purposeful---she runs straight to what she wants to get at, like the liquid soap in the bathroom or her brother's Nintendo or the cat food, or just the sink, to turn on the water full blast, or the fridge to dump things out. It's incredible. If it wasn't so hard to deal with, it would actually be impressive. I try so hard to keep her engaged, but she is restless---even a TV show or video or book or toy she likes only holds her attention for a little bit before she has to run around a little. I think part of that is just her and not the autism---Tony is like that too, without the mischief.

The all-around is just life going on. I am making a conscious effort to spend all the time I can with the boys. It is like a clock is ticking, and I know 3 years from now, they will both be gone at college (most likely). Some of the family times all together are feeling poignant. I wish I could freeze time sometimes, and enjoy this summer and the times we are all laughing and happy together forever. I know the boys will not be going away for good, but it's never quite the same. And so I want to make sure to give all my kids the attention and love and fun they deserve. And gradually, we are learning how to have that with Janey as a full-fledged participant.

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.