Just Janey

Our Sunday morning---Janey is playing "Born to Boogie" by Hank Williams Jr. over and over on the iPod.  Tony is cooking his non-stop weekend breakfast of bacon, greens and toast.  Coffee is flowing freely.  And I am thinking that this day, this week, is a preview of the rest of our lives.

It's just Tony, Janey and me here.  William is at college, and Freddy is, amazingly, in Venice, Italy.  Thanks to the generosity of his school and his uncle, he's on a school trip through Italy for the week.  And we are getting a glimpse of the life we will most likely live until we are no longer here to live it.

It's not a bad life, right now.  Janey has been in a good mood for a few weeks now.  It's not a perfect mood---she can fly into a rage several times a day, and she is often very upset if what she asks for doesn't happen immediately.  But compared to how her moods can be, it's wonderful.  She loves to be on the go, and she and Tony spent yesterday on numerous errands, which she enjoyed very much.  I miss the boys very much, but I know they are happy, and I admit it's somehow freeing to have only one child to take care of.

But forever?  That is the part that sometimes feels very tough to think about.  There's a chance, of course, that someday Janey will be in long term care.  But I like to live in reality.  From all I read, it's very, very hard to find care for someone like Janey.  Only about 15% of autistic adults that can't live on their own have housing not with their parents, from what I've read, and most of those are adults able to function at a lot higher level than Janey.  Janey would need round the clock care.  That is expensive and rare.

From what I am told, I need to start right now working toward the goal of Janey living away from home.  The route for doing so is not something I'm ready for at this point---it would involve giving up more control of her care that I am willing to do right now.  Maybe I'm being shortsighted.  There were certainly days last late fall I was ready to do just about anything needed.  But lately, the new medication and the new behavior plan at school seem to have calmed Janey.  I can picture, if things stayed as they are right now, a life that involves Janey home with us for good

Yet even as I write this, Janey comes over to me and says "Want to snuggle?"  This means---stop whatever you are doing right now and give me undivided attention.  If I tell her to wait, she screams, hits me, freaks out.  I get her dressed, and while doing so, ask her to get me a pullup, something she easily understands and can do, and she gets hysterical at the request.  After ten minutes, I am exhausted.  But incidents like that blend into the day, and if they don't last all day, I still think of the day as a good day.  I think that is why even on a "good" day, I am tired, at the end of my rope, by the time Janey finally goes to sleep.

Life with Janey feels full of impossible choices.  Do we push all out for away from home care for Janey, even though we are unsure that is what we need right now, so we'll have a better chance in the future?  Do we resign ourselves to a future that is quite limited by Janey's needs, or do we do what we can to preserve a life that is fuller for us, but uncertain for her?  Do we gamble on our health remaining good enough to care for her long term?

There are no easy answers.  And our choices are far from unique.  Around the world, so many others are living a life like ours---with children getting old enough to start the questioning---will this be how it is forever?  Sometimes, I admit, I wish myself back to William or Freddy's age.  I wish I were in college, or on a tour of Italy, my life ahead of me.  But I am here.  I need to figure out how to make this life work for all of us.  To all of you out there facing the same questions---best of luck.

My First Guest Post! Guest Author---Freddy Amara, Janey's brother

Hello Rarer In Girls readers,

My name is Freddy, Suzanne's middle child.  I am 17 years old and currently a senior in high school.  My mother had requested that I write a guest blog entry about how Janey has affected my childhood.  I responded that I would be happy to; this blog has had a profound impact on my mother's life, as there is a wonderful community of more than just readers.  You all have let my mother---and my family---know that we are not alone.  Your support is incredible, and I personally thank you for reading my mother's entries and giving her support.

This is how Janey has changed my life.

It hasn't been easy with a little sister with autism.  I wish she wasn't autistic, obviously, as I feel I

cannot have conversations with her that I could have had with her had she been normal. However, I love her the way she is. I have a special connection with her that nobody else has, much the same as a normal brother and sister would have.   My personality has certainly been altered because of Janey.  I feel like I am more tolerant and patient than many other people my age.

One of the hardest parts of being a sibling of somebody mentally disabled is the misunderstanding among everyone else.   The usage of the word "retarded" has died down over the past few years, however, each time somebody uses it in an offensive context, I feel a sharp pain.  They don't know what it's like. The nights of screaming, the stares in public, the fear for the future.  I try to explain to people when they use the word how deeply it can hurt.

My parents have been great in my opinion. Ever since her diagnosis, they have made it clear that for my childhood, Janey is our shared responsibility; more theirs than mine and my brother's, however, there will come a time that when my parents will not be able to care for her anymore, and she will be our responsibility.  I accept this, as does my brother.  I do help out with Janey often, but my parents have let me have an otherwise completely normal childhood, and they care for me just as much as they would have had Janey not been autistic.  In a way, Janey's autism has given me more freedom than I would have had otherwise, for a huge chunk of their attention is spent caring for her.   This is good for me, I have learned independence at a younger age than others, and my parents have learned to trust me with my schoolwork and don't bother me about when I do my studies.

It should be said that I'm writing this on my own, my mother doesn't even know I already wrote this.  She'll proofread it before posting, I'm sure.

Autism is a scary thing.  I want to have children when I am older and have a family, however, it is widely unknown what causes autism, and it is possible that genetics play a role.  I have questioned whether I want to have children despite the risk of autism.  I know I'm quite young and I shouldn't worry about it yet at this age, but I can't help it.  I'm glad my parents had me, and to all of those parents out there who had an autistic child as your first, it must be a tough decision whether you should have more children.  It's not my place to say, I'm just happy that I exist, and I think I'll take the risk someday of being a father.

It is nice all the support people give towards finding the cause of autism, however, as my mother has likely spoken about before on this blog is that the public doesn't seem to care as much about helping families that have already had children with autism.  Many things could cause autism, or any other mental illness for that matter, and so I agree with my mother that it would be nice if there was more support or awareness for those who have a loved one already diagnosed.  I feel like I should follow in my mother's footsteps in raising awareness somehow.  How, I don't know.  I believe just letting people know how common autism is is the first step.  Not only that, but the effect it has on our lives.  You all reading this already do know and care, and so I thank you.  My only request is that you tell somebody about autism who might not know its effects on families, and maybe even share this blog with them.

The time lost with Janey's brothers

Last night was a little bit of a tough night for William, my older son.  It was the night a lot of colleges gave decisions, and he didn't get into a few he hoped he would.  He's still been accepted at several of his top choices, and he has gotten great scholarships, but that didn't change the fact it hurts to be rejected, no matter how much you know that the schools are hugely selective and that to get on the wait list to two Ivy League schools in a night is not a bad thing.  Especially when you are 18, it feels huge and sad.  I tried to comfort him, and I hope I did, some, but I think he got more comfort from his high school adviser, and that's okay.  He said that she had been with him for more of the journey, so she understood what he was feeling more, and that was fair.  But still...it made me sad.  It made me sad because that is not what I wanted to be as a mother.  In my mothering dreams, I'd be there with my kids, all of them, for every step of everything.  We would have visited all the colleges he had dreams of, together.  We would have worked together on his essays (essays that in this life I have not even read, but that's his choice---I could have done at least that!), I would have had time to always be around when he wanted me around.  The fact that I think he's just as happy I was quite hands-off (he's told me many times that is how he likes it, and actually thanked me for not pressuring him or hanging over him) doesn't matter in my mind.  If he HAD wanted me along for every step of the process, it would not have been possible.  With Janey, I don't have that kind of freedom.  Every trip, every free time block, every day out has to be planned and worked out in advance.  It can never involve both Tony and me, except for rare cases when one of the boys can watch Janey or when she is at school.  And even the smaller times, the random moments of just being free to listen to William or Freddy, are limited.  I can't tell you how many times that that I've had to say "Just a minute---Janey is being crazy and I need to keep an eye on her"  Or the times I've tried to sneak a moment to look at something on their computer and Janey used the time to spill something, or freak out, or come ask for food that she wants that second.

When I read autism memoirs in the past, there was often little mention of siblings, except something along the lines of "Of course the intensive all out full press routine of curing our little guy left little time for his sister, but she loved to help us, and she was stronger for our hours of neglect of her"  Not exactly that, but that's how I read it.  I was determined when it became apparent how great Janey's needs were that I would not be like that.  I hope I haven't been.  Our situation is a little different than some, though, because Janey is the youngest, and the youngest by so many years.  If she is hungry and the boys are hungry at the same time, I can tell them to fix themselves something.  I can't tell her that.  If she is crying and they want me to watch a funny YouTube video with them, I expect them to not mind that I have to tend to Janey first.  If I choose the video first, they know that disaster will follow.  But that doesn't change the fact they are shortchanged.  They don't get my energy, my time and my ears as much as Janey does.  I hope they know they get my love just as much, but I still hate the inequality.

I have great sons.  They are independent, fascinating, wonderful guys.  I don't write as much about them as I would, because they are teenagers and no teenager wants cute little stories about them to be out there in the Wild Wild World of Web.  I don't think they have been damaged by Janey's autism, but I don't think there's any question their childhoods and teen years would have been easier without her being autistic.  Just like I sometimes dream of the daughter that is the one I'll never have, they probably dream of a sister they will never have---one that will be there to listen to them, to share grown-up things with them, to talk to about all the things Tony and I did wrong---the roles a sibling plays.  Instead, they know in their hearts someday they will be responsible for Janey.  They didn't choose to have a child as Tony and I did, but in the end, they will be the ones with the work of caring for her.  I can tell them that's not the case, but in reality, it is the case.

I know the conventional thing to say here would be to point out all the benefits of having a sibling with autism or another special need---how they have learned compassion, learned to love without expecting something in return, learned they are not the center of the world, learned that all people have value.  And those things are true.  But I think, overall, it's not a trip to Holland for them.  It's not just a different but equal sibling experience.  I want to thank them both, my amazing sons, for being kids I can feel so proud of, and I want to say I wish I could be the mother you deserve.  There's endless amounts of love for however many children you have, but there is not endless time, and that's the real kicker.

Janey and her brothers

As tough as it can be sometimes with Janey, I know it would be far tougher if it were not for the luck of her family placement. She is the youngest by 7 years (to the day!) and has two big brothers, now ages 14 and 17. If she were an only child, or had younger siblings, or siblings closer in age, I just can't imagine it. The boys make life with Janey so much easier, in many ways.

In general, my boys do far less around the house than most kids do their age. I don't think it was a conscious decision at first, but as time went by, Tony and I decided that they would have minimal housework, because they were called upon far more than most kids would be to help with their sister. That's their family contribution. Janey literally can't be left alone at all. She can barely be in the next room alone. She has very little sense of danger, and could put herself in unsafe situations very easily. Barring that, she can also make a huge mess very easily, with her diaper, with spilled liquid, with pulling stuffing out of things, with most anything available. So someone is assigned at ALL times to watch her. If I have to go to the bathroom, go to the cellar to do laundry, even just take a minute to catch my breath, someone needs to be watching Janey, and that's where the boys come in. Probably 5 or more times in a typical day, we say "You need to watch your sister for a minute". They have learned we mean RIGHT THEN, and they have seen the results if she is not watched well enough. They sometimes complain a little, or say that it's not their turn, but on the whole, they are wonderful. We try hard not to overdo this. Once in a blue moon, probably 2-3 times a year, Tony and I go out for a few hours on our own, and they babysit for real. Although we don't do this much, it's GREAT that we can if we really want to. At those times, we either pay the boys or promise them a treat like a meal out the next day, because babysitting her is a real job.

I read a book once for children about having an autistic sibling. I liked it overall, and gave it a pretty good review on Amazon. When I saw other reviews of the book, I was truly surprised. Many, many people didn't like it because of just a very few times in the book where parents seemed to use the help of siblings. One child was told by her mother that when she grew up, she might want to have an extra bed at her house so her sister with autism could sometimes visit overnight. People went crazy about that, like it was being horribly cruel to that child to make her feel "responsible" for her sister. I thought that was insane. Like it or not, the boys do have some responsibility for Janey. She is their sister, and we are a family. We've always told them that when Tony and I are gone, hopefully in the distant future, they will be the ones taking care of Janey---not necessarily having her live with them, but overseeing her care. I've gone as far as saying they should keep that in mind when picking a wife. I don't feel guilty about this, and believe me, I usually feel guilty about everything. But Tony and I both have very strong feelings about family. You take care of family, and to somehow exclude Janey from that statement would go against everything we believe in.

I think the boys do get back a lot from Janey. She can be a lot of fun to be with, at times, and overall, watching her is probably more fun than dishes or laundry or the others tasks they'd otherwise have. They have learned much compassion from her, and learned not to be scared of or dismissive of people with special needs. And they appreciate her little triumphs too. This morning, using the method of repeating it over and over for her to copy, I said "goodbye, William" to her older brother about twenty times, and after that, Janey said "Goodbye, William!" in the sweetest voice you ever heard, and I think William was close to tears. Often, after they have watched her for a bit, they report "Janey was being precious!" Amid all my constant wondering if I am doing the right things with Janey, and with my children in general, I don't have that doubt about the relationship between siblings. I think the boys are only being made more of the fantastic people I feel they are becoming by Janey. And it's nice to feel sure about something like that.