Through the years we all will be together...

Easter Sunday was quiet at our house.  We don't visit family or friends, we don't go out to dinner.  Janey can't be around younger kids much, due to her aggression at times, travel to far flung loved ones is tough, and eating out...well, it's not worth spending a good deal of money to rush a meal, waiting for the meltdown.  So we stay home.  And truthfully, it's okay.  We are loners a bit.  But this year, both Tony and I were feeling a little emotional about our Easter.  It took us until about halfway through the day to realize it was the first year with neither boy home.  Our family felt small.

Janey was in a good mood all day, though.  We had fun early in the day taking a long ride into the city.  We love early Sunday rides, with little traffic.  Boston is a great city, when you take away the traffic nightmares, and we enjoyed driving through some neighbors, like the Little Italy of Boston, the North End, that we don't often see.  We all had some chocolate (Janey's early in the day, to prevent non-sleep!) from huge chocolate eggs that Uncle Pino gave us, and Tony got some of our favorite Gimbel's jelly beans.  It was a fine day, but I was still feeling low.

We aren't very religious, but I certainly wouldn't mind going to church on Easter.  We haven't found a church, though, that we can go to with Janey.  We want church to be a family thing, like it was with our beloved Hyde Park Congregational Church that shut down when Janey was two.  But there is no way on this earth Janey could be at a service, and there is also no way she could attend Sunday School without someone one on one with her.  So, we don't go to church, and that feels a little funny on Easter too.

Looking at Facebook during the day, I of course saw many pictures of kids at Easter gatherings.  I didn't make up an Easter basket for Janey, because she has never had any interest at all in that (or stockings) and because we would end up eating all the candy she didn't want, or she would end up eating chocolate bunnies and not sleeping for a week.  But I decided I wanted to take pictures of Janey for Easter.  I love taking pictures, especially of Janey.  I got out my iPad and used the Hipstamatic app, which has all kinds of virtual lenses and film that it picks at random each time you take a picture.  I adore it.  I took about a hundred pictures of Janey, to see what got picked and how they came out.

While I was in the middle of taking pictures, suddenly and unexpectedly, Janey began to sing.  She often sings a few lines of songs, but it's rare she sings the whole song, although she knows many by heart.  This time, however, she did.  She sang "Have Yourself a Merry Little Christmas", the whole song, in her otherworldly high and perfect singing voice.

I try hard on this blog to portray autism honestly.  Autism isn't a series of miracles, a savant hidden in an unexpected place, a innocent showing us all the way.  But in every child's life, including Janey's, there are a few moments that take the breath of parents away.  Janey's singing yesterday was one of them.  As she sang "Through the years, we all will be together, if the fates allow...", I cried.  And held her close.  She had sung the song, that, if not seasonal, most perfectly captured the mood I had been feeling all day.  For that moment, our troubles were indeed far, far away.

How Little Closed Doors Add Up

A while ago, I read this article about an IKEA playground---how a mother wasn't allowed to go in to the playground with her autistic 9 year old, so he wasn't able to play there.  My reaction at first was "Well, that's not much of a big deal.  That's their rules"  Then I got thinking about it, more and more, over the last few weeks.  Although that particular incident might not be a big deal, little closed doors like that one add up.  They add up into a world where so many, many places are closed to Janey and others like her.

Most of these closed doors are not formally forbidden to Janey, of course.  They are public places that legally, she's free to go.  However, because of her behavior and because I don't want to intrude on other people and their rights to use public places, I just can't take Janey to them.  For example, after our trip to the library, I realized that it was not a place for Janey, especially not with small children around.  Trips to playgrounds or to splash parks are not really possible, because Janey is bigger than most of the kids there and prone to lashing out at the little ones.  Restaurants are out of the question, for the most part.  I would not ever attempt a plane, or a longer train or bus ride, because Janey would scream at many points during the ride.  Church doesn't work---others can't quietly worship with a screamer in their midst, and Sunday schools or childcare aren't staffed by those able to handle Janey.  We can't go to movies or plays or concerts, because others pay to be there and it's not fair if they can't hear what they paid to hear.  If you start to think about this list, there are very few places we can take Janey.

I don't like the above list, but I can understand it.  I think sometimes of the Spock line from one of the movies "The needs of the many outweigh the needs of the few" (rest in peace, Leonard Nimoy!)  Although I COULD make a point of taking Janey to many of those places, and I know many children with autism could handle those places without making them hard for others to use, I know Janey, and I am not going to ruin a movie or a restaurant dinner or church for others to make a point.

What I don't understand, what I have a much harder time accepting, are the closed doors in places that are supposed to be for children with special needs.  I think often, more than is probably reasonable to think about, about the Saturday program run by the city that I got a flyer about from Janey's school, for special needs children.  The program had a 1 to 4 ratio of caregivers to children.  That made it, in essence, closed to Janey.  She needs a 1 on 1 ratio.  The program sounded so ideal, but, much like the other respite program we tried, it seems aimed at children with mild special needs, or perhaps children with special needs that are physical and not behavioral/emotional/intellectual.

A literal closed door that comes to mind for me so often is that of the Child Life room at Children's Hospital.  When Janey spent six days at Children's awaiting placement in a psychiatric hospital, we were not allowed to take her out of her room.  Right down the hall, there was a room chock filled with toys, books, games and the like.  We were not allowed in that room.  It was for the SICK children, the PHYSICALLY sick children, not the children like Janey.  I even offered to take her there in the middle of the night, when other children would not be there.  I would never, ever have gone there and put a little sick toddler in jeopardy.  I only wanted Janey to be able to play there if no-one else was there.  But that was not permitted.

Janey's old school, the inclusion school, was in so many ways a dream school.  It had a wonderful courtyard, an outdoor classroom, a beautiful sensory room.  It was filled with people that had known Janey since she was born.  I loved her school.  And then---it too was closed to her.  I understand the reasons---I understand the reasons for everything I've written about here.  But still---sometimes it makes me cry to think of all the places Janey is not able to go, all the doors that are closed to her.

What can be done?  I'm dreaming here.  In many ways, maybe nothing can be done.  Maybe my initial reaction to the IKEA story was the true one---well, that's just the way it is.  However, I will dream.  I dream of restaurants, parks, museums, churches, playgrounds, all of those, having special days for autistic kids and families.  If we had the urge to eat out, or go to church, or a park, we could look at a web page and find a place that had a special day going on.  Even if each venue only held such a day once a year, there's enough of those places that we'd almost always have a place to go.  My other dream is that programs for special needs could truly mean ALL special needs---that I could describe what Janey needs and it would be provided.  And a big dream---that someplace like Children's Hospital would treat mental illness like physical illness---that they would actually find a way to make children like Janey feel welcome, and not like a scary outsider.

Life isn't fair.  That old chestnut mothers tell their children is very true.  Everyone has closed doors, and I accept that.  But the amount of doors closed to Janey, and to children like her, create an isolation that builds on itself, that creates a loop, a vicious circle.  There are no easy answers to this problem.

Janey is at camp!

I haven't written at all here until now about Janey going to camp.  I think that was because I feared a jinx, or thought I still might decide not to send her at the last moment, or something else would happen to have it all fall through.  But she is there now!

The camp is called Camp Fatima.  It's in New Hampshire.  They have a week every year called Exceptional Citizens week, and during that week, they accept campers with all types of disabilities, campers that would not be able to go to most any other camp.  Here's a website about the camp.  It is run by the Catholic Church, but you don't have to be Catholic to go (we are not).  From everything I've heard, it's an amazing, amazing place.  It's totally run by volunteers, many who come back year after year after year, and each camper has a counselor assigned just to them.  There is boating, swimming, horseback riding, archery, tennis, arts and crafts and more.  Every year the week has a theme, and this year it's "The Sound of Music", which was made for Janey!  They perform a little bit of the musical every night at dinner. The camp is totally free, payed for by donations.  I heard about the camp years ago, from teachers and therapists at Janey's old school, many of whom volunteer there.  They encouraged me very much to apply, although I was hesitant, but I finally did.

Taking Janey up today was a bit of a mixed bag!  Yesterday was her birthday, which was also a mixed bag.  She did very well in the morning, but the excitement got to her by the afternoon (it's also her brother's birthday, and although I try hard to keep it low key, she almost always has a hard time with it).  She was AWFUL in the afternoon---biting and screaming and just completely wild.  But by evening, she was happier, and she woke up in a lovely mood.  The ride to camp (about 2 hours) went well!  She was cheerful almost the whole way.  We took both boys, and that helps, as she likes being around her brothers.

When we got to camp, it was a chaotic scene at first, as a check-in like that always is!  We had to wait in a line in the car a bit, and then went to wait to hand in Janey's medication.  Janey started to lose it, completely.  She started screaming and biting herself, and actually did bite me.  At that point I was talking to a camp worker I thought was a check-in person, who was wonderfully calm about how Janey was acting, as was almost everyone!  People were clapping and yelling "Welcome to camp!" and acting like she was perfectly normal.  That was great.  I had Tony wait in the line for us, and we went over to her cabin, and showed her her bunk (the counselor sleeps right above her!) and I figured out that the woman I was talking to, Dawn, was actually Janey's counselor!  That was GREAT news, as she is a teacher in an autism classroom and has worked with autistic kids her whole career!  It's amazing to me that she takes a whole week a year to volunteer at the camp.  I told her that what she had just seen was about as bad as it gets with Janey, and it's usually a lot better than that, and indeed, Janey had already calmed down.  She liked seeing her bunk and cabin, she had some juice, and we went outside.  The picture is Janey with her cabin in the background.

I loved the questions Dawn asked---all the things that are necessary to know about Janey!  She said they pretty much have the kids do the activities they want, so if Janey likes the boats, she can spend a lot of time on the boats!  She said she will call for sure if things get out of control, but she doesn't see that happening.

We left after not that long!  It's always better with Janey to go while the going is good, and she doesn't like transitions, so we knew she'd not want us hanging around!  She happily high-fived us all goodbye and let Tony and me kiss her, and we were on our way.  We pick her up Saturday morning.

Now---almost a week to fill!  I miss her already, but I have to admit---it's going to be incredible in a lot of ways to have a week of respite.  We have NEVER had anything CLOSE to that.  We've never been away from Janey for more than one night together (once only for the one night, even!) and to have 6 nights---we aren't going to know what to do with ourselves!  On the way home, we all found ourselves getting tense when things happened that would upset Janey---bad traffic, loud noises, music stopping---it was very hard to picture that she just wasn't with us.  We stopped at a restaurant even though we weren't that hungry, just because we could!  Tony has the week off, and we plan a few day trips and maybe one night in a hotel in the city with the boys.

I am of course going to be nervous all week, waiting for a call to say that we need to come get Janey, but the truth is, it wouldn't matter where in the world she was, I would still feel that way.  I think she's in one of the best possible places she could be, and I am extremely, extremely grateful to the camp, to Dawn, and to all the people that encouraged me so much to apply!

Autism Friendly Day instead of Autism Awareness Day

The big exciting holiday of the year for autism families is coming up in just two days!  Yes, indeed, it's Autism Awareness Day!  I just can't wait, because that will be such a fun day for Janey and all of us---yes---all those great activities for autistic kids and their families!  What?  What's that you say?  There are really not any exciting fun times for autistic kids on that day?  What the heck?  It's just somehow a day named for autism, where for some reason you are supposed to "light it up blue"?  How is that going to help anyone?  And who isn't aware of autism these days?  Is this a day to reach out to the 1 or 2 percent of the population who for some reason has never heard of autism?

Now, of course I'm just being a little nasty.  I am glad there's an autism awareness day, and I plan to write a post about it on the day and be more with the program.  But lately, I've been thinking about what I'd like better than a day to make people aware of autism.  I'd like something I would call an "Autism Friendly Day"

Here's my dream for that day.  All restaurants, stores, recreational establishments and more would be encouraged to participate, which would mean they would set aside that one day to do what they could be be autism friendly.  Restaurants could have a night where families with an autistic child could eat out, in an environment friendly to a little bit of strange noisemaking, random tantrums and odd food choices.  The wait staff could get a quick training ahead of time about what to expect.  I would guess it would actually make the restaurants some good money on an otherwise normal Tuesday, because a lot of families with autistic kids would love to eat out with them, but don't want to have to worry about other diners being annoyed by their children.  Stores could have a special time set aside to actually shop with your autistic child, without people staring or being nasty if your kid hates shopping and throws a crying fit while you are desperately trying to try shoes or clothes on them---and maybe other shoppers could refrain from staring or saying your child seems tired and should go home.  Places like mini-golf or arcades or indoor gyms could take one day out of 365 to cater especially to autistic kids.

While I'm dreaming, maybe schools and churches and community centers could get in on this.  I am extremely lucky Janey goes to a school where she is always included, but not every child is that lucky.  Maybe for that day, the separate autism classes could join the regular classes, and the "regular" kids could learn about autism, and meet some fascinating kids with autism they would otherwise not know.  The Sunday closest to Autism Friendly Day could be a day for churches to welcome families affected by autism.  That would be wonderful---our family could try a church together, something we have not been able to do since Janey's regression.  Community centers could open to kids with autism for recreation---they could have some classes or open gyms set up.

I think this day would do a lot more to raise autism awareness than the current setup.  Nothing makes you aware of autism like actually spending time with a child with autism, or an adult with autism.  You can't learn about autism solely by reading about it.  And becoming more aware of what autism actually is would benefit everyone.  Businesses and churches and restaurants would benefit tremendously if they reached out to families that have simply stopped using their services due to their autistic child.  The general public would learn what the real needs are of families affected by autism, and the fear of the unknown that I am sure often keeps people from getting to know our kids would be reduced.

Best of us, this day would actually be a fun day for families like ours.  It would be a treat, in a life that often is stressful and tiring and isolating.  It's a dream, but I think it could easily be reality, without a great deal of cost or bureaucracy.  I'd love it.

Losing my religion

This is a post I probably shouldn't write, but I will anyway, because it's on my mind so much lately.

Before Janey was born, actually when Freddy was still a baby, I started going to a church right near our house, The First Congregational Church of Hyde Park. I loved it there---I loved the minister, Jackson Smith, the building, the organ music, the hymns, the people. It was a very, very small congregation, and got smaller and smaller and smaller as time went on. When Janey was about 2, it closed and the church building was sold. Jackson died a few years after that. His funeral marks the last time I was in a church.

Even before the church closed, we had stopped going regularly, or going as a family. Janey was not yet full blown autistic then, but already at 2, she could in no way be at church without completely disrupting the service and making it completely impossible for us to get anything out of it. The church was too small to have a nursery, but even if it had one, I am pretty sure they couldn't have handled Janey even then. So either Tony or I went, or a lot of times, neither of us. It was sad for me, but I thought of it as temporary.

However, it wasn't. We tried another church a year or so after ours closed, and it was easily apparent that there was no way it was ever going to work. Janey can't be cared for by anyone without experience with autism, and she cannot be in church with us. It isn't a matter of her being fussy---she will SCREAM, run around, get completely hysterical. It's not fair to anyone there. There are too many noises that upset her, too much quietness, hard seats---who knows what, but it would be impossible. I read a book recently about a woman with an autistic son---the woman's father is a well known religious figure, and even she was never able to take her son to church or find a church that would work. That made me feel a little better. Churches are not set up to deal with autism, at least in a way that would allow the boys to go and allow Tony and me to listen to a sermon together.

I was never very strong in whatever faith I had. When I was going to church all the time, I felt very comforted by it, but I was never sure if that was God or just the ritual. Now, I am less and less and less sure I believe at all. I would not call myself an atheist. I haven't lost all belief, or hope for belief. I have tremendous respect for anyone who does have faith. I wish I did. But I don't think I do. Part of this is the question that everyone asks---why does God allow bad things to happen? Why is Janey autistic? What is the reason for that? It's a lot easier for me to think there IS no reason, or no plan, than to think it's part of a plan. I have a wonderful friend who tells me that often, God's plan isn't ever revealed to us. I respect that opinion, but I don't know if I believe that. Or if I do believe it, I am not sure if I liked it. Why would God make a plan that involves making a 6 year old girl autistic and retarded? And that is a mild sad thing compared to many other things I can't understand God doing---cruelty to children and animals, wars, children born with horrible diseases that will result in their death, and just all the meanness and horribleness out there?

I do differentiate between faith and church. My faith is not dependent on having a church to go to. But it would help. I think there is a huge unfilled need for churches that could welcome families with an autistic child. It would mean the world to have a church to go to that would have childcare for autistic children, and that would even find a way to include them. Janey could learn hymns. She could learn to repeat Bible verses. She could just feel the love that a good church can give. I have a dream of us all going to church on Christmas Eve. Janey loves the carols so much. I think whether she understood the Christmas story or not, it would make Christmas mean something to her. But I don't think this is going to happen. I've asked around, done internet searches, even had my mother's minister research churches in the Boston area, all in vain, to try to find a church that might be interested in working with us. Almost all churches would welcome us, but I want a church that would embrace us, that would take good care of Janey while we were at a service, that would love her. I want this, selfishly, even though I am not sure I believe in what churches are there for.

Church and autism

I am not terribly religious. I go back and forth between being an agnostic and having some rather wavering belief. I'm being totally honest here. But something I do want is for my family to go to church, my children to learn the basic Bible stories, the Golden Rule, the community that comes with having a church, the music, the reason for holidays like Christmas, etc. However, with a child with autism, this is pretty much impossible to do as a family. I've searched the web, I've asked around, I've tried churches, I've put some effort into this. But church and a lower functioning child with autism just don't mix. Sunday schools are not equipped to deal with her. I could go to church and stay in the nursery with her. But that kind of defeats the purpose. I want that hour to renew myself, to reflect, to listen. And I want to do that with Tony. I want my sons to be with me. I could try bringing Janey into church with me. RIGHT.... Not only would I not get anything from the service, but no-one else in the entire church would. She would scream, run, yell, raise a fuss like you would just not believe. I've tried. I could go to church by myself, but that is not what I am looking for. I want what most people can find fairly readily---a church that welcomes our family, that has a Sunday School or nursery for that hour so I can listen, that will welcome ALL our family members. I think if some denomination really wanted to grow, a great way to do that would be to welcome families with autistic kids, and advertise that. This is another case where the current wider definition of autism hurts. I once saw a publication put out by a church about welcoming autistic members. Well, it was obvious they meant people with Aspergers or very high functioning autism---verbal people. They talked about issues that are not Janey's issues, not about how to just keep a child happy so the parents could go to church, or the siblings could. Or how to possibly include Janey somehow. I am not counting on her learning a lot of religion. But she could and does learn hymns, and that would be something I would love. I bet she could learn some simple Bible verses, without probably understanding what she was saying. And I KNOW she could feel the love that a true church community could give, and I KNOW I would be helped by being able to go to church, as we used to regularly before our church closed, right around the time it also became impossible to really go to church anyway. That's my Sunday morning thought for today.