A tough decision

The Saturday respite for Janey has been a nice break off and on over the last few months.  I've been unsure about a few aspects of it, but Janey seemed to be enjoying it, and we certainly very much needed a little respite.  That's why it was very tough today deciding to not send her, after driving to the respite house, and deciding we mostly likely won't be sending her any more.

I don't want, in any way at all, to put down the respite.  They seem like great people, providing a service that is hugely valuable to many parents.  I am so glad they exist.  But right in their literature, it does say they can't guarantee a ratio of caregiver to child more than 3:1, although they said it's often 2:1.  In reality, Janey needs one to one care, or a environment like school where there are many people looking out for her.  She is not able to keep herself safe, she is prone to running away at times and she needs help with most all aspects of daily life.  The literature also said they can't serve kids with extreme behavioral problems or self-injurious behavior.  Janey at times has been known to have both.

This morning, when we got there, there were around 6-7 kids already there, and one woman as a supervisor for everyone. She was also checking people in.  Tony and I of course didn't leave Janey right then.  We didn't talk to each other, but we both were thinking that we needed to wait until more staff showed up (we were right on time, not early).  We waited about 20 minutes, and one more staff person did show up, but so did about 6 more kids.  Tony and I spoke briefly and decided we just couldn't leave Janey.  They were planning a trip to see Disney on Ice, and I couldn't really picture it working out for so few people to be watching that many high needs kids.  As we were leaving, one more person showed up, and when I told the woman checking people in that we were leaving, she said more people would be there.  So I am sure they would have their stated ratio before they left.  And truthfully, although I don't know the diagnosis of the other kids there, I think most of them would be fine with that ratio.  Several were in wheelchairs, several other pretty high-functioning seeming kids with Down Syndrome, and the other kids seemed fairly docile.  But Janey was already running around.  I couldn't quite picture what would happen if she ran off in public, and I couldn't feel sure that anyone would always have an eye on her, as is necessary.

The woman in charge was a little defensive when I told her we were leaving as we were concerned about the level of staffing for Janey.  I tried hard to make the point that I wasn't saying they were doing anything wrong, and that I wanted to make their day easier, as she seemed stressed.  I am going to write her a letter to further explain what I meant, and to thank her for the time Janey did spend there.  I know they rely on volunteers, and I know people run late.  The thing is with Janey---every second is important to have her watched.  The fact more people were coming later wouldn't help her if she decided to wander off when they weren't there, or if she melted down badly and started hurting herself.  The program wasn't right for her, and that is not the program's fault, or Janey's fault either.

I had some feelings from the start that the staffing levels were not high enough for Janey.  But I needed respite, beyond badly.  I decided to try to trust it would work.  And it might have still worked.  But today, leaving, I knew in my heart I was doing the right thing.  I am prone to second-guessing, to thinking I am wrong if anyone in the world disagrees with me, but today, I knew, and Tony knew, that we couldn't leave her.  And I think Janey is relieved.  We'll see if she cries tonight, like she did last week after going, but for now anyway, she had been extremely cheerful and happy.  I have also been happy, in thinking that NEVER ONCE did I feel even a second of worry when leaving Janey at school that she would not be well enough supervised.  I haven't appreciated that enough over the years!

I will still look for respite for Janey.  We still need it.  And I hope it's out there, someplace.  But for now, we have school, and we will make the weekends as fun for her and for us as we can.

The gradual changes---negative and positive

I read a short story at some point about the end of the world.  It happened on a Thursday, with a flash of blue light and a strange sound, but people went on with their lives for a while.  Things gradually got weirder and weirder, and about a week later, everyone realized the world was over and faded away.  The reasoning was that the end of the world was just too big a change for people to take in all at once, and so the mind absorbs it slowly, over a bit of time.  Now, having a child diagnosed with autism is IN NO WAY the end of the world.  But that story always struck me---how our mind can't take in all of a big event at once, can't pick  up on all the changes it brings.  I was thinking about how we realize how autism has changed our lives gradually, over days and weeks and even more, over years.

First, the negative.  You might not want to read this if you have a child just diagnosed.  You need the gradual time to process these changes, to have them not come as a blinding shock.  But if you've had a few years to live the autism life, you probably know them.  Your life is vastly changed by your autistic child, every single part of your life.  There are the little things you can't do any more, or can't do with ease---sleep all night, go on trips, eat out, have casual get-togethers with other families, eat a meal as a family calmly, have your dream Christmas, keep up with hobbies, go out with friends...pretty much every little pleasure you used to have is changed drastically.  And there are the big, big things you can't do.  You can't count on a future without a child to care for.  You can't assume your child will go to college, or finish high school, or learn to read.  You can't assume your child won't run out the door, into the street.  You can't count on them keeping themselves safe.  You can't relax.  You can never, ever again totally relax.  You can never, ever again be a normal, regular, mainstream family.  You are changed, for life.

You might read this and think---there are positives?  But there are.  They might be more subtle than the negatives, but they are there.  They take longer to see, sometimes.  But as time goes by, you will find them. You learn the true meaning of not sweating the small stuff, and to be cliched---that almost everything is small stuff.  You find yourself chuckling over the things other people worry about, the things you used to worry about.  Your child is having trouble mastering long division, or isn't scoring at the top of their class in reading?  And you are upset over that?  But your child can talk, has friends, will live on their own some day?  So what's the problem?  That's a freeing feeling, especially if you have other children.  Both my boys have said to me that they realize how little we pressure them compared to other parents.  To us, they are miraculous.  We don't sweat the Cs.  Next, you realize how many truly good people there are out there.  There are people devoted to your child in a way that goes far beyond any job or paycheck.  I have met more wonderful teachers, therapists, paraprofessionals, principals, and also more fellow parents of special needs children that are amazing people than I ever would have known or guessed without Janey.  Having a challenging child introduces you to people up to the challenge.

The last positive is a change that has occurred in my heart.  It's hard to write about, because it involves admitting I didn't used to feel the way I do now.  I remember when I was first pregnant.  Tony and I talked about what we would do if we had a child with Down Syndrome or other issue that caused intellectual disability.  We agreed we would most likely put the child up for adoption.  We thought, we truly thought, that we could not handle a child with that kind of disability.  I felt, in my heart, that children like that were a tragedy.  It makes me cry, to think now how I felt.  Now I see the children at Janey's school with Down Syndrome, the other children with autism, the children with various other challenges, and I can see them as the amazing people they are---people with as much value and personality and importance as any other child. I still wish Janey wasn't autistic.  It's not an easy life, for her or for us.  But as for her being a valuable, lovable person, a person worthy of respect...I am there.  It took a while, but my heart was changed.  I don't measure people by yardsticks like academic tests, or income, or accomplishments any more. That change took a while to come, but I am grateful forever to Janey for bringing it about.

Successful dinner out---knock on wood

We just got back from eating out with Janey, at an actual sit-down restaurant.  I can't think of the last time we did that successfully, and I don't know how I got up the courage to try.  I was feeling hemmed in, and also drawn in by the constant commercials you see for chain restaurants---meals that look incredibly good and reasonably priced.  I know they often aren't as good once you actually get them in front of you, but I'm a dreamer.  So we drove out into the night (all but Freddy, who begged off due to homework) and started thinking about where we should try.  We drove into the parking lot of a Chile's, but Janey took an instant dislike to the place.  She answered very clearly when we asked if she wanted to eat there---"NO!"  We tossed around a few more ideas, and then drove to a Uno's (used to be Pizzeria Uno's).  Janey seemed to like the looks of that place better, and we went in, ready to leave as soon as it became necessary.  And it did NOT become necessary!

Some of the keys---the crayons they gave Janey---she didn't actually draw with them, but liked holding them.  Getting her chocolate milk stat (it didn't arrive quite as quickly as she'd have liked, which we did hear about from her).  Taking her for a walk the one time she asked.  Getting the right table, a booth in a quiet area of the restaurant.  Ordering her a kids' steak and fries.  What didn't help as much as you'd think---having the iPad there.  Janey seemed to feel it was out of place in a restaurant environment, and wouldn't play with it at all.

And then there's luck, or karma, or whatever.  At one point, Janey tossed her crayons into the next booth, hard.  Tony got up to get them and said he was sorry, that she had special needs.  One of the women there laughed and said "Don't give it another thought.  Our family is full of them!"  When they got up to leave, they stopped to say hi, and that is when I realized one of the three middle-aged women, who I think were sisters, had Down Syndrome.  That woman especially was sweet with Janey and made a point to try to connect with her.  Then, as we were leaving, I somehow felt compelled to tell the waitress we hadn't tried a dinner out at a sitdown place with Janey for probably four years, and that she was autistic, so we were very happy how well it went.  The waitress said casually "Oh, yeah.  My sister is autistic too"  I left feeling less alone that I often do.  There are other people out there living a life similar to ours, and the life we will someday live, with adult children or siblings with special needs.  There are lots of us.  It doesn't always feel that way, but there are.

We gave Janey a big high-five after the meal, and let out our breath.  It won't always work that well to attempt to live the ordinary life, but it's good to know we sometimes still can.

Why Janey will never be on Barney

Janey has gotten back into a favorite Barney show, a Top Twenty countdown of songs.  I was watching it with her a bit this morning, and was struck by how the show strives to be very inclusive---children of all races, kids with Down Syndrome, deaf kids, blind kids, kids in wheelchairs---it's nice to see.  And then I thought---why never any kids with autism?

And of course the answer is obvious.  A child with autism on a kids show would be a disaster.  They would not act, they would not be with the program.  They would not appear to be "one of the crowd" which is always the message of kids shows---we are all the same inside.  Except kids with autism.  They are different inside.  They would cry when they were supposed to be happy, they would laugh when the scene didn't call for it, if they were verbal, they would talk about trains or bridges or whatever else they like, not the topic at hand.  They would not be automatically friends with everyone else.  They just would totally disrupt the whole message.

It's an interesting problem.  It creates a bit of a public relations nightmare for autism, I think.  It's why you never seen fundraisers or public service ads or posters featuring actual kids with autism.  One part of that is that they don't stand out enough.  Just a picture of Janey doesn't broadcast anything.  Sometimes, of course, she has "the look", but that's something you see more if you know autism already.  Many pictures of her look completely "normal", except, if I might boast, extra beautiful.  And the other reason is that kids with autism stand out too much.  It seems very, very important in our society to send a certain message---that once you get to know someone, you will see they are just like you.  But that doesn't work with autism.  In some ways, of course, it's true, but in many ways, it is not.  Janey's not going to get with the program at some point.  She's never going to part of the happy Barney crowd.

So what would I like?  How would I want the media to handle autism?  What I'd like is probably too much to ask.  It would be that they would show autism as it really is.  I'd love to see a Barney episode with a Janey in it---someone perhaps thrilled by the music, dancing around to her own beat, then maybe overwhelmed by all the sound and action, crying a little, then laughing hysterically at her own internal joke, and maybe, just maybe, if she were in the mood, hugging Barney.  When she wanted to, if she wanted to.  I think letting people see what a child with autism is really like would go a long, long way to helping the many autistic kids out there be understood and accepted.

It won't happen.  If autism ever makes it into the kids' media scene, it will be a child with very, very high functioning autism, a verbal child who is a little quirky but essentially with the theme---like you and me.  Someone who can act.  Can act normal enough to be on the show.  Which is a sad message.  We all should be accepted---except those who just somehow really aren't like the rest of us.  We will just pretend they don't exist at all, because there is no way to easily include them in the big happy dance.

Dependents

I am not a very political person.  I don't have passionate political views on most issues, and I try to keep an open mind.  I have good friends on either side of the political divide, and I can see the reasoning behind their differing views.  There are a few issues I generally base my votes on---education and autism.  Not that many politicians directly address autism, but I look at what they say about disability issues in general, or if there's nothing there, other closely related issues.  It's the only way to decide that makes sense to me.  I don't know enough about the economy or foreign affairs or the budget to make a reasoned decision, but I know enough about education and autism to decide fairly well.

That being said, I want to quote my friend Michelle's post on Facebook yesterday (hope you don't mind, Michelle!).  It was on my mind all night.  It was so well said.  Here it is...

One day I'll be dead, and my child will be dependent on the kindness of strangers (taxpayers) to keep her alive. I sincerely hope and pray that society does not cast her aside for being an entitled, freeloading victim. Please put yourself in my shoes for one terrifying moment.

 That got me.  That really got me.  Because that's what it comes down to.  Someday, Janey will be dependent on the kindness of strangers, of those who make the decisions how money is spent.  Baring miracles, Janey will never work at a job that can support her.  She will always be dependent.  This is not her choice.  She would have no idea what being entitled means.  She is no freeloader.  She is the result of the chance we all take when we have children, when we, in fact, just live another day.  None of us know when it will be us that fate decides to disable, or to give a child with disabilities to.

I know there are freeloaders out there.  I know there are those that feel entitled.  But Janey, or indeed our family, are not them.  We most certainly pay taxes.  We get no money from the state or federal government for Janey.  Some day, she might quality for Social Security Disability, and at that point, I will apply for it, but right now, we support her.  And we pay Social Security taxes to support others like her, that are not in a position to support themselves.  And we do so gladly.  No-one likes taxes, but they are the best system devised for making sure there is a safety net for those who need it.

There are always going to be dependents in this society.  Or at least, I hope there will be.  A society that doesn't want any dependents scares me.  There are always going to be those born to need lifelong help.  And I dare say we are all better because of it.  When I see all the children at Janey's school with Down Syndrome, with cerebral palsy, with autism....I see some wonderful, amazing children that bring great joy to those around them.  Do we want a society without those children, without the adults they will one day become?  Do we want a society where there are no dependents?  I hope, for the sake of Janey and all those like her, that we most certainly do not.

What if I knew from the start?

I just finished a book I really liked---"The Year My Son and I Were Born" by Kathryn Lynard Soper. It was about the first year of her son's life. He has Down Syndrome, and she wrote so honestly that it was truly moving. She had a very hard time dealing with the diagnosis, and depression partly resulting from it. One point she made that really hit me was about decision making---how if you make a decision about your child based on what you know at that time, and using the facts and your emotions and your knowledge of your child, even if it later turns out it was the wrong decision, you can't regret that, because it was the right decision for you when you made it. In other words, second-guessing is a useless emotion. I need to keep that in mind---that's powerful stuff.

The other big thought the book set off in me was wondering what it would have been like to know from the time of Janey's birth that she had autism. How would that change things? Would it have been better, or worse? I can think of things both ways. It would have been heartbreaking, and I think it would have made the first year a lot harder, as I would have been dealing with a lot of emotions at the same time I was just trying to get through that first year of babyhood, which is hard in any case at all. But I could have started sooner with any kind of early intervention for autism, which might have helped (and might not have helped). If Janey's development had been the same as it actually was, except I knew she was going to regress, it would have been heartbreaking in a way to watch her talk in ways I would have known she'd never maybe talk again. I think a lot about a doctor's appointment when Janey was just turning two. She had it along with Freddy, since they have the same birthday. It was Freddy's turn first, and Janey spent his whole appointment trying to catch our pediatrician's eyes and connect and flirt with him in that two year old way, and at one point he said "Well, at least we can say she's not on the autistic spectrum!". I can't think of that moment, ever, without crying. He was looking for signs she was, due to my older son William at one point being diagnosed as on the spectrum, and even LOOKING for signs, he didn't see any. And about a year and a half later, no-one would be able to look at Janey and NOT see she was autistic. So maybe ignorance was bliss in those early years. We worried a lot about her, but it was because she wasn't walking. You can see it in pictures of her---you can almost see the month she started showing the signs. Her eyes change. Like my eyes are changing right now from my tears.

Janey is doing very, very well the last few days. She is doing some fantastic talking, and greeting of people, and connections. I should be writing about that. And I will. But right now, I think I'll take a little nap. I need it.

Never compare

If someone asked me my number one piece of advice for raising a child with autism (not that anyone has), I'd be ready for an answer---NEVER COMPARE. Never compare your child to "typical" kids, or even other kids with autism, or kids with other challenges like Down Syndrome. Just don't compare. It's a fool's game to compare.

Of course, I break that advice all the time. The worst, the very hardest thing, I've realized, is shows at school. I love the shows, I love the fact that the arts are a big part of Janey's school, but they kill me. I've tried to have a positive attitude about them, and have written here about that, but they are so hard. I am sitting there looking at a huge amount of kids Janey's age, and in my eyes anyway, every last one of them is far more advanced than she is, more with the program, happier...it's very tough. Janey is up there not doing any of the dances, or hand gestures, not singing although I know she could, starting to cry, having to be held by teachers, while it seems like every other kid is putting their all into it. The kids with Down Syndrome are amazing. I love to see their progress. The kids in wheelchairs blend right in---they are totally included. And of course everyone is doing everything they can to include Janey---but she stands apart. I am sure I notice this more than anyone else---everyone notices their own child most.

I guess things like shows are hard because a lot of the rest of the time, I play mental games with myself and simply don't allow myself to compare Janey directly to her peers. When I drop her off in the morning, I love seeing the other kids, and I don't think about how Janey doesn't do what they do. That's her school---the kids are so great to Janey that it seems like she has an important role to play. She is helping them, I like to think, as much as they are helping her. She is different, but not unequal, because everyone is being themselves. Maybe in shows, the fact everyone is supposed to be doing the same thing makes it harder.

Another hard time is the "cold" situation---when someone who doesn't know Janey starts talking to her as if she were a typical 6 year old. That doesn't happen much anymore, as now that Janey is older, I think it's more apparent to most that she isn't typical. She laughs or make noises that are more typically autistic, and more than once, when I have told someone she is autistic, they reply they could tell, that they could recognize it. That doesn't bother me at all. It means that people are more aware of autism than they used to be. It's part of my low-key mission---to tell people Janey is autistic so when they run into another child or adult with autism, they won't think "What a weird person" but might think "There's a person like Janey, with autism". But once in a while, someone will ask Janey questions you'd ask a typical kid---"How old are you?" "Where do you go to school?" "Do you have brothers or sisters?" and that is very hard. I usually jump in and answer for her---mostly because I don't want the asker to feel awkward with the silence that will ensue if I don't. But it makes me compare---those are questions that most 6 year old will answer with ease.

Another tough thing is work on the walls---the papers up on the walls that kids have done. I look at the ones from Janey's classmates last year, before she was held back, and it's like looking at a miracle. They can WRITE. They can READ. They can DRAW RECOGNIZABLE PICTURES. It's amazing. My mind plays a game, telling myself that what THEY are doing is the miracle, not the typical thing, and that somehow Janey is the norm, surrounded by geniuses. Somehow that's easier than thinking about how much Janey can't do.

So, if you can do it, my advice is not to compare. The times I can really do that, it's great. Those are the best moments---when Janey says or does something cute, when she is so overwhelmed with happiness by little things, like us playing with her jack-in-the-box or putting on the video she wanted, or taking her to the grocery store, or giving her chips and salsa, or playing catch with her, or blowing out a dandelion, or letting her pick out a shirt, or things like that. There are so many great moments with Janey that can be enjoyed best if we just think of her as Janey---not a 6 year old who can't do what 6 year olds should do, not as autistic kid, but just Janey---a special person in her own right. I'm not saying I don't want her to be called autistic. I like being able to educate people about autism. But at home, for just us, when we can just enjoy Janey as a family member, a beautiful, funny, interesting little girl who exists on her own, not as an example of anything, well, that's the best.

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.