Janey is...TWENTY???

 It's hard to believe, but it's true.  My sweet Janey is now 20 years old.  Her birthday was in August.  Even though obviously I knew it was coming, it still seemed and seems impossible.  

I admit, it's been a little bit tough in some ways to think of Janey as being 20.  I guess it's hard for any 

Janey on her 20th birthday

parent to ever believe they have an adult child, but of course with Janey it's a little different.  She is in many ways still like a toddler, and she always will be.  

A few weeks ago, I had the absolutely wonderful privilege of getting to meet in person my grand-niece, who I consider a granddaughter.  Olive is almost 3, and to say I fell in love with her is a severe understatement.  My three kids were all so amazing in their own ways, but everyone says that being a grandparent is a whole new level, and they are right.  Sitting and playing with her---Tony said he didn't think he'd ever seen me happier.  

I realized, after spending delightful time with Olive, that in some ways I've avoided being around children other than Janey much over the past many years.  I don't ever want to compare Janey to other kids, and I still don't.  But seeing how much Olive could talk, and how clued in she was to emotions, and people, and how quickly she could learn new things---it did highlight a little what Janey's limitations are.  Not that I didn't know them---I did.  But I saw that I had very much kept myself from thinking about them as much as I might have.  And maybe now I'm ready to.

Janey being 20, being absolutely an adult, in some ways makes it easier.  She is what she is.  In the past 3 or 4 years, I don't think she has changed much, or honestly, learned a great deal that is new.  Her interests change a little here and there, but the core Janey is the same.  Her talking used to come and go a lot more, but now, it's steady, and at a bit lower level than at a lot of points.  She makes requests, and that is mostly all.  There is less echolalia, and next to no just commenting.  I am very glad she can make requests, but boy, would it be something to get to hear her tell us what she is thinking, or what is bothering her when she cries, or why she is very excited the nights she stays up all night.  And I don't think we ever really will know those things.

As the years have progressed, sleep has emerged as the biggest challenge with Janey.  In the last few years, it's not just that she sometimes doesn't seem to need to sleep at all, it's that this cycles with periods where she sleeps a huge amount.  She'll go a few weeks sleeping up to sometimes 16 hours a day, and then have maybe a week of more typical sleep, and then go into a few weeks of very, very little sleep.  Nothing external seems to cause either one.  You might recall that in the past, we never gave Janey chocolate as that kept her awake, but that doesn't seem to happen any more, which is good, as Janey loves chocolate!

Today---Janey and a donut!

And when she sleeps so much, she doesn't seem sick or depressed---just sleepy.  The up all night times are tough, but not quite as tough as they used to be, as Janey seems to make less demands on us during the night.  The sleepy times make it hard to do things with her---she slept through huge parts of the days Olive and her parents were here.  

As Janey changes less, as she is settling into who she is as an adult, I feel like my worries and concerns, and sometimes my anger at the world, is changing more.  We worry, as do so many parents in the US, what will happen when Janey is 22 and no longer able to go to school.  Janey loves school, and this summer, at the start and the end when there was no school, she didn't do well at all.  We have registered her with the state and she has been determined eligible for services for the severely disabled, but from what we have heard, labor shortages are making it very hard to find a program for those turning 22.  And if we do find a program (a day program is what we want), can we trust it as we trust the schools?  I've read a few horror stories about abuse of disabled adults lately, and they make my blood run cold. 

I think the tides are turning a little when it comes to those with what is now called severe or profound autism.  I hope there is more awareness than there once was about people like Janey.  Even so, sometimes I feel fury at money being spent on so many other things and so little being spent to help people like Janey.  I truly feel a lot of it is that people like Janey don't have much of a voice---they are unlikely to vote, unable to self-advocate.  And the money that there is so often used for research or studies or support groups, not for direct care.  I admit I can feel a white hot fury at hearing about some million dollar research study about autism, or yet another support group.  I could go to a support group every day of the week, I could submit Janey's genes to any number of research studies, but if Tony and I want to have a night out, there is no program for that. 

I will do my very best to keep writing about Janey as long as I am able.  A big part of that is that I want to let people know there are people like her---ADULTS with severe autism.  To the others that have walked this path with me with their own girls (and boys), so many of who now are also hitting those adult years, and to those new to this journey---I want you to know you aren't alone, as you have helped me know I'm not alone.  

And to Janey, I will read this next part to you.  I don't know if you will understand it, but I hope you do.  I love you so much.  You are an amazing person, a person who deserves to have a meaningful, interesting, varied, happy life.  Thank you for being my daughter.  My adult daughter.  My amazing, beloved, beautiful, unique Janey.

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.

Growing Up Fears

The other day, I glanced at Janey asleep on her bed and had the thought I think every parent has at one point---I thought "Who is that?"  She looked so big that for a minute I didn't recognize her.  Janey is growing up fast.  She is outgrowing her clothes like crazy, she now wears a woman's size 7 1/2 shoe (we all have big feet!) and after always looking younger than her age, suddenly she looks older than her age.  That is something that seems to run in my family---early maturation followed by ending up not very tall!  I am proud of my girl growing up, but I am also scared.

The world isn't as kind to autistic teens and adults as it is to autistic children.  This isn't something planned, but it's the truth.  I fight it very much myself, when I see an adult acting obviously oddly.  I tell myself "That is Janey some day" but there is something instinctive that makes me uneasy, that puts up a little guard.  I hate this about myself, but I have to be honest.  We expect kids to act in unpredictable ways, but when adults do, it takes a minute to see that they have special needs.  Here's another post by the mother of an autistic girl that tells of these worries very well----link here.

There is also the deadline that hovers over all of us in the alternative world of fairly severe special needs---age 22.  The schools will educate Janey until she is 22.  Then, she is an adult, and there is no more requirement by anyone to educate her.  I hope very much there will be programs in place for her at that point, but it's not a certainty.

These things combine to make me wish time would slow down.  Janey getting older isn't going to lead to the milestones we dream of for our kids---college, marriage, a job, kids of their own.  Janey getting older means for a large part the same Janey, but in a bigger body.  That must be incredibly frustrating for her, to the extent she understands it.  When I think about that, I can understand her screaming.

Of course, there is small ways in which Janey does get more mature, and I love seeing them.  Yesterday after school we went to the ice cream store, the neighborhood market.  It's just a very short way from our house, and Janey was impatient with my slow walking.  I made her stay next to me most of the way, but on the way home, I told her once we were just in front of houses that she could go ahead.  She ran to our driveway, and then turned and came back to me.  I told her she could go down the driveway by herself, and she ran and did that.  I thought about how just a year ago, I would not have dreamt of letting her run ahead of me, and I felt proud of her.  She is progressing in little ways all the time.

In thinking about Janey's future, I wonder if we are preparing her for it in the right way.  I think about what she learns at school.  School is set up for a future that it's unlikely Janey will ever have.  She is learning things that are meant as foundations of reading and writing and as an ultimate goal, a career or college.  She doesn't learn these things easily, or at all.  I wonder sometimes if her time would be better spent learning other things---how to prepare simple meals, how to do small house chores, and very importantly, how to enjoy the things she can enjoy---running, music, swimming and things like that. More and more, time spent trying to get Janey to say letters or count objects seems a bit wasted.  But when she learned how to throw away her own pull-up, how to put her clothes in the hamper, how to pour herself a glass of water---those things made her life and our life and her life happier and easier.  I picture a goal of her someday maybe walking to the ice cream store on her own.  We would watch her go, maybe trail her, but I picture her going in, picking out the ice cream, taking it to the counter and giving them money.  The workers there are so kind to her---we could prepare them ahead of time for her visit.  And she could walk home on her own.  That is a goal I would love to aim for, maybe 5 or 10 years from now.  It might seem like a little thing, but working toward that might make more sense than working toward reading.

The next big step our society is going to have to prepare for is all the current child with autism no longer being children.  We need to think seriously about what we would like their lives to look like, what THEY would like their lives to look like.  That is what I am going to start doing with Janey.  I think she has a chance at a happy life.  It's not going to be the life that most people lead, but I can see it being a life that has its own meaning and joy.  That is, I can on hopeful days.  On discouraged days, I am terrified of that future.

The Politically Incorrect Enjoyment of Autism Parenting

I've been thinking for a while about this blog entry, and having some trouble putting into words just what I want to say, what has been filling my mind for a while now.  Last week one day, when Janey was having a very sweet day, Tony and I got talking about how sometimes, it's a good feeling to know she'll always be with us.  We watch the boys moving on.  William is in college, and weeks can go by where we barely hear from him.  Freddy is a junior in high school, and busy so much of the time.  Soon he too will be in college, and then they both will be adults.  I hope we stay very close with them, always, but I realize there are no guarantees.  And that is how it should be---kids grow up.  But Janey will not be growing up in that same way.  She will become an adult, but she will always be our child.  I usually say something here like "barring miracles" but I've come to realize the miracles aren't on the way, in our case.  I've accepted that.  And sometimes, I can truly embrace the idea of a child that stays at home forever.

So what's the problem?  Well, there are two ideas that come up over and over again in my reading about autism, both of which I do very much like.  One is autism acceptance---being able to see Janey as valid and important and lovable just the way she is.  I try to do that.  I am not perfect at it---there are days when Janey screams all day or says nothing for many days but "I want strawberry milk" or "I want Kipper" that autism is harder to accept than it is on the better days. But most of the time, I accept her autism, and on the good days, I embrace it.  The other idea is assuming competence.  I want to assume that Janey understands much more than she does, that she maybe even understands everything, that she has abilities that she hasn't shown us.  Basically, the philosophy is not to underestimate Janey, not to rule out anything in terms of what she can do.

So---I accept Janey as she is.  I accept that as she is right now, she will not be able to ever live on her own. She is my child forever, and that is sometimes a good thought.  However, I also want to assume that Janey has untapped potential, that some day, somehow, she might do what I'm told other people with autism have done---she might suddenly show that she can do things like read anything, communicate fully somehow---heck, maybe go to college.  And when I think that way, feeling happy that she is going to always be in my house, be my child forever, seems wrong somehow.  SO---how can I feel both at once?

There are many more examples I can think of like this.  I feel happy that Janey will never experience the nasty side of girls, the mean girls and the bullying.  But that is accepting that she is not going to ever understand social interactions at any kind of higher level.  I love it that Janey loves me wholeheartedly, that she smiles at me at times with the intense love that is uncomplicated by the complex feelings mothers and daughters have about each other as they get older.  But don't I want her to mature, to be able to see me as a real, flawed person she can break away from?  I love how Janey loves music---how she claps and jumps and thrills with excitement when a song she loves comes on, how she remembers any song she's ever heard.  But shouldn't I wish for her to have a mind that is more typical, a mind that doesn't have room for all that because it's learning algebra or history or biology?  I feel glad she will never have her heart broken due to an ended romance.  But I should be dreaming of her being able to experience that romance in the first place.

In short, when I accept the good parts that come with autism, I am also limiting what I expect from Janey.  I feel joy in the parts of her that are childlike and will remain so.  But should I feel only sorrow that she is not going to have a normal adult life?  Is it okay for autism acceptance to be also a joy in what autism has made Janey, even if her limits are part of what it's made her?   I don't know.  I might be just overthinking.  But for now, I'm going to choose to embrace the parts of autism mothering that I can, and to try to do so wholeheartedly, without worrying what that says about me.  I'm going to allow myself to picture what is good about having my child be a child forever.

What I wish I'd been told

I read a blog entry that was highlighted on the Huffington Post recently.  Here is it...  LINK  For some reason, maybe because I'm having a not great day, it upset me a lot.  I calmed down and re-read it, and found there was a lot I agreed with there.  Most of the message that the author wished she had been given when her son was diagnosed was something I agreed with, really.  But with one big exception.  Her dream message says " What you'll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life."

 Well, that is what got me.  It got me because it is like so much of what I've read lately.  It seems to disregard a huge part of the autistic population----kids like Janey.  Kids that DON'T have great potential.  Now, that sounds awful to say.  Janey might have great potential.  I might be somehow squelching it with my poor attitude.  But I don't think so.  I delight in Janey often.  I think she's amazing, she's wonderful, she's astonishing.  But to say she has great potential is not fair to a lot of people. It's not fair to all the people who work very, very hard with her and have yet to unlock that potential in any huge way.  It's not fair to me, who would give anything on earth to see Janey progress.  And most of all, and what really bothers me, is it's not fair to Janey.  It's not fair to say that a child with an IQ that no-one will give me an exact number for, but which I can guess is around 40, a child that still operates in many, many ways on a 2 year old level at the age of 8, a child that unless miracles occur, will need intense life-long care, has great potential.  It's not fair to say her life will "with the right supports" be happy and fulfilling.  Maybe it will be.  But what I've seen of what is out there for adults with her level of involvement is not happy or fulfilling.  It just isn't.  I'll do anything to make her life as happy as I can.  But I'm not going to take on the burden of thinking there is something I could do that I'm not doing that is keeping her from having this life of potential and happiness and fulfillment in the future.

So, what would I have like to be told, back when Janey was diagnosed at the age of 3?  Maybe something like this..

Your child is not going to be one of the spontaneous, amazing cures.  In many ways, 5 years from now she'll be functioning about as well as she is right now.  There will be days that can only be described as from hell.  There will be false hopes, there will be sadness, there will be disappointment and there will be discouragement.  However, keeping that in mind, there's going to be a lot good.  There will be times that you see Janey as just about perfect---whole days when there could not be a more delightful child.  You will realize that her intellectual disability matters very little in the grander scheme of things.  You will love the people at her school, the wonderful care and teaching and love she gets.  You will meet other parents, amazing people, people you will love being friends with, people that will help form your own circle of support.  Don't feel like there are things you should be doing that you aren't.  Trust yourself.  Take care of yourself.  Keep an eye on your own health.  Don't let it go in order to concentrate fully on your kids.  Enjoy your other children as well as Janey.  Appreciate your amazing husband.  Live for the good times, and know the bad times are not endless.  Autism is tough.  It's extremely tough, tougher than you can realize right now. But you are tough too, and you will learn to live this new life.  Give your girl a hug, and love her just the way she is.

Everyone's letter would be different.  And that is the important part.  Don't let anyone tell you what your letter should say.  You'll find out.  You'll make your own way.  There's only one part of my letter that applies to everyone---loving your child just the way they are right now.  And I know that the people I have met through this blog do just that.

Another Day, Another Book

My mini-marathon of reading autism related books continues.  Yesterday I read "Next Stop" by Glen Finland.  Her son David is an adult with autism (and other issues like Tourette's), and she writes about learning to let go of him---teaching him to ride the Washington DC Metro system, having him go for two years to a training program far from home, helping him get jobs and watching him develop his own life.  I liked the writing.  It's a little old-fashioned in a way, kind of detached.  It reminded me of books like "Please Don't Eat the Daisies"

A couple major thoughts came to mind while reading this.  One is the sub-theme of David's brothers.  Although the author respects their privacy in the writing, I get the feeling that growing up with David was not at all easy for them, and that there still is lingering problems due to this.  The brothers don't seem to show up for major events in David's life much, and although they love him, I think they were scarred a bit by all the attention he required growing up.  They were close in age to David, and I hope the fact my sons are not close in age to Janey helps with that issue some.  But I know there are times they miss out on a lot due to Janey.  I like to tell myself they are learning to be independent early on, and that I am there when they really need me, but I wonder.  I don't know if there is any way to totally keep a sibling's autism from taking away something from a childhood, but I want to do the best I can in this way.

The other thought that kept coming back to me is how in some ways it's probably easier to raise a lower functioning child with autism than one like David.  In a lot of ways, of course, it's not.  But I don't think I'll ever have to deal with worrying about where Janey is when she's off on her own.  I can't really picture a day she'd ever go anywhere on her own, even to the store we can see from the house.  She very rare is anyplace out in public without her hand firmly held by one of us.  I don't think I'll ever have to worry about how she'd doing at her independent job, or how life is treating her when she is away at a training program, or if people on the street are scamming her.  I don't think it will be hard for us to get a power of attorney for her when she gets to be that age.  It's pretty clearcut with her.  She's not going to "pass" for normal any time soon.  I can't even fool myself into thinking she does for a second when we are out in public any more.  It's very clear to anyone that sees her that she is "special" in some way.  And although of course I'd give pretty much anything for that not to be the case, it does make some things easier.

The book is one that needs to be read by those making the policies that will affect the Davids and the Janeys in the future.  There are going to be a heck of a lot of them becoming adults in the next 10 or 15 years, and I don't think anyone out there is prepared.  It's going to have a HUGE impact on society.  Even if we decide every family just has to take care of their own, and as a society take no responsibility, that results in a lot of families with reduced earning power, and therefore reducing spending.  That will affect the economy, if you want to look at things from the most economic way possible.  It might be more cost-effective, in the long run, to provide help for these families.

I'm probably going to take a break from reading about autism for a little while.  I'm a little burnt out of the topic.  But it's good for me to read the books now and then.  I need the perspectives.  It's a big spectrum out there, and we all have something to teach each other.

A Bit Tougher

We've had some tough days lately. Janey mostly holds it together at school, but has been falling apart in the evenings, and today, all day. It often starts when she wants something she can't have unlimited amounts of, or that we don't have around. One night, she wanted Funions, and we were plum out, and she didn't take it well. She loves having her teeth brushed, but we have to limited the toothpaste (even though we get fluride-free for her "fun" brushing, but we can't afford to use up a tube a day) and she gets furious. She can't have everything she wants, and of course even if she did get everything she wanted, there would be something else she'd think of to want. But what is different is her reactions. I certainly never gave the boys everything they wanted, and they learned that life is like that. But when Janey gets upset, if it's the wrong week or the wrong mood, she doesn't recover. For hours. We go through hours of her screaming, hysterical. Usually now it's not literally hours, but often up to an hour, and sometimes more. When she's in a good mood, it seems like we are making progress, but when she's not, I don't see any evidence she'll ever learn from not getting what she wants. Which is a very, very frustrating and depressing thing to think of. I try not to project too badly into the future, but I do. I'm picturing Janey as a woman, and us increasingly old and frail, and her wanting Funions, and all kinds of scenerios where that doesn't end up well. And I can tell myself that it won't be like that, but at low moments, I wonder. If you haven't, I recommend reading Karl Taro Greenfeld's book "Boy Alone". Noah was the boy featured in a series of books written by his father, Josh Greenfeld. I read them long before I had Janey. Noah Greenfeld is autistic. His parents did everything, EVERYTHING to try to help him. And nothing really worked. His life today, as a man just my age, is a very sad life to read about. His parents had money, resources, some degree of fame and an endless amount of caring. Noah even got lots of ABA, long before that was common. But nothing really did anything. I don't think that will be Janey, but in my dark days, I think about it. We all want to feel hopeful and bright and think that the future is limitless. But that's not necessarily the truth. I need to stop thinking like that. The picture is from a walk I took with Janey early this morning, after she woke way too early and the other members of the family needed to get some things done that were impossible with her around. I loved walking with her in a deserted part, just letting her do what she wanted. I need to create moments like that for her. I need to stay hopeful.