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.

Janey's burst appendix story---Part Four

The story continues.  There isn't as much to report this time.  Janey is still in the PICU.  Yesterday, she had the ultrasound to see if she had an abscesses, and thankfully, she didn't.  It did show she is still very affected by the horrible infection she had after her appendix ruptured, and that her intestines are very stretched out.  But she didn't need to have drains put in, so that was great.  She has had a fever most all the time---it goes down when she gets the IV Tylenol, but then goes back up as it wears off.  It's not a high fever, but it's not great she keeps getting it.

We were waiting a lot yesterday for her to have a "pick" line put in.  I am not sure that's the right term, but it's a special IV line which she can get nutrition through, as well as all her antibiotics, and it could be used to draw blood, too.  As I've figured out about the hospital, there is a lot of waiting, and plans change.  From what I can gather, there is sort of an argument about whether she should have this line.  She needed the nutrition, so they are giving her a different kind that can be put in a regular IV.  She has a big bag of cloudy milkshake looking stuff going into her.  I guess the worry is that she might have a blood infection of some type, and that would not be a good thing with the pick line, or on the other side of the story, she might start being able to eat soon and the pick line would be overkill.

She did start moving her bowels yesterday, over and over and over and over.  It's amazing what she put out considering she hasn't eaten now for 10 days.  At first we were excited she was going, as it meant her digestive system might be recovering, but now the thought is that it might be a bit too much, and they are going to do tests regarding that.

She slept fairly well last night, after finally getting to sleep around 1 am.  I slept better too, at least in terms of a hospital sleep.

So---it goes on.  I did go home yesterday for about 4 hours in the afternoon and evening.  Tony and Freddy convinced me I just had to.  It was probably good I did, but I didn't sleep at home, and taking the subway and train both ways resulted in my net rest being far less than it would have been if I just stayed here.  But I had a few bills I really needed to take care of, and it was good to see my garden, which with our recent rain has gone from being very dry to being overcome with weeds. 

The boys have been incredible.  They have visited a lot, held down the fort at home,  and just been so much support to us.

Janey is a bit miserable this morning.  I think she's just tired of being here, and her stomach is hurting, and she's just not having fun. I can't blame her.

The plan for today is to see if she can eat, and to try to figure out if she has an infection.  Yesterday the plan was to get her back to the regular ward today, although I'm not sure if that's still the case.  I've figured out everything happens in the morning in hospitals, when doctors come around, and the rest of the day seems to be mostly waiting for things and just healing, which is fine.

I very much appreciate all your thoughts and prayers.  I am not much of a prayer myself, but I have done a bit of it too.  I would probably call myself an atheist, but the last few days I'm more of an agnostic, the kind of agnostic that hopes somehow someone is out there hearing my pleas for Janey.  But it's wonderful knowing how many people are thinking of Janey so much.  Thank you.

Stress Times Ten

Just a brief entry here.  The past few weeks have been stressful.  Tony, my husband, is a federal employee, and therefore has been not working for the past two weeks, with no end in sight.  I don't generally let money issues stress me, but just having our routine changed and the uncertainty is stress enough, and the lack of pay is not fun.  We had two appointments last week regarding Janey.  I'll write more about them when I can, but they both upset me in different ways.  Janey had an off and on tough week.  This weekend, however, has been great with her, but unfortunately not with her brother William.  William called on Saturday and said he was homesick and wanted to come home for a while from college.  We went to get him, and it was apparent after a short time home that his anxiety level was unbelievably high.  He's having a very tough time adjusting to campus life.  He's made a good amount of friends, but Brandeis is a very different environment that he's been used to in his urban high school or at home with a loud Italian family.  I went back to campus with him yesterday and spent some time, and even I felt like fleeing from the quietness and the intense and focused social interactions.  William is committed to staying in college, and we are going to support him all we can.  But I have a feeling it's going to be a rough ride.  He worked so so hard to get into a very good school, and it's breaking my heart he is feeling so sad and overwhelmed.

And so we go on.  As with all of you out there on this journey of special needs parenting, or indeed parenting at all, we put one foot in front of the other each day and go on, because that's what we have to do.  We go on with hope that tomorrow will be easier, that our children will be happy and thriving and living the best lives they can.  My religion has left me, for the most part, but there are no atheists in foxholes, and I prayed a bit this weekend, to whoever might be listening, to keep my kids safe and happy.  I truly can ask no more in life but that.

The Least of These

This evening, Janey craved some ice cream, as she often does.  Tony and the boys were off to a concert, the first big concert the boys have been to, so it was ladies night here, and I decided we'd have ice cream for our ladies night.  We walked to the corner store.  Believe me when I say that it's not really an upscale place.  Tonight was a vivid illustration of that.  The people hanging around outside the store were people you usually only see in movies when they want to show that something very scary is about to happen, or that you are in a very, very bad neighborhood.  But Janey wanted her ice cream, and my fear of how she'd react if we turned around far outweighed any nervousness about the folks outside the store.  As we got close to the door, one of the lowlife looking guys rushed over and opened it for us, and gave Janey a little bow.  When we got in, several other interesting looking people started shouting toward the cashier.  I braced myself for some demand for money, but instead they were asking him if there were any rules about how many squirts of syrup you could put in a slushie (if you are interested, there are no limits on that).  Janey took a long time to pick out her ice cream, as she doesn't like to rush important decisions, and a woman that looked very much like she might be involved in a very old profession was waiting to get ice cream, but when I told Janey we needed to hurry it up, she said "No rush at all, honey, let the little sweetie take her time"  So we did.  Finally, ice cream in hand, we went to check out.  The cashier smiled a huge smile and said "Hey, I know that girl!  Hi, there, darling!"  I said "yes, she's a regular" and he laughed and laughed and said "We are always happy to see her!"  I asked Janey to say thank you, which she sort of did, and we were on our way.

Walking home, I was fighting back happy tears.  Janey certainly wasn't acting "normal" in the store.  She was making her sounds, and jumping up and down, and waving her arms about, and in general not acting at all the way you'd expect an almost 9 year old girl to act.  But the people there treated her with kindness and respect.  And I thought how that's pretty much the only way I judge people any more.  If you are good to Janey, if you are kind to her and accept her and treat her well, I see you as a good person.  Maybe that's too simplistic.  But I can't think of a much better gauge.

I'm not very religious, but from somewhere,  from some long ago Sunday school lesson or sermon, I recalled a Bible verse.  I looked it up, and it's Matthew 25:40, which says "And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me."   It's referring to feeding the hungry, and clothing those without clothes, and visiting prisoners, but I don't think it's a stretch to apply it to being kind to another kind of "least of these brethren", those like Janey, with autism and intellectual disabilities.  How we treat people who, although I don't like to think of them as "less", are different than us---that seems like a pretty good way to judge people.  And you just never know.  Today reminded me of that.  Another time, the person going out of their way to be good to Janey might be a millionaire, or a grumpy teenager, or a fellow classmate, or anyone else.  Whoever they are, I thank them, from the bottom of my heart.

Being Tough---my own way

First, I want to thank everyone who reads this blog.  You guys keep me going.  I wish I could know you all in real life.  Maybe someday, I'll travel around and try to meet every last one of you.  In the meantime, it's great to hear from you here, have you as friends on Facebook or just know you are out there someplace!

Last week I was hit with a huge amount of self-doubt.  There were lots of reasons, some I'm not going to get  into just yet, but I was feeling hugely down on myself.  But today, thanks to thinking about things a new way with the help of all of you, I'm feeling much better.

I'm never going to be tough in some ways.  You will not see me organizing fundraisers, or hiring top advocates to come with me to IEP meetings, or educating everyone that looks at Janey with a hint of anything but total support.  I am thankful there are people that can do those things.  If there weren't, we'd be back in the bad old days, and Janey would not even get an education.

But I am tough in other ways.  I can't tell you how many times I've had a morning that for many, for most outside the wonderful world of Holland trips, would be the roughest morning they've ever had, and still, I somehow got Janey dressed and ready for school, and drove her there.  I don't know how many nights from hell I've had, where Janey barely slept, screamed or laughed all night, was possessed by whatever possesses her, and still, I got up the next day and went about my life.  I've stood strong while Janey lashed out at me with hitting or biting, and responded with hugs and comfort.  I've continued to shop while Janey screamed in a way most people have never heard a child scream, all the while holding her hand and whispering words of encouragement.  I'm not looking for rewards for this, but I'm realizing it's something to be proud of.

Many times, I've felt guilty because I don't go to more school meetings, I don't go to autism rallies, I don't go to the statehouse to advocate for autism.  I feel I don't do enough for the greater autism world.  But this morning, a song came into my head.  I'm not very religious, but I love religious music.  It's my form of faith, I guess.  Going to Sunday School growing up in rural Maine, there was a children's hymn we sang every Sunday.  Here are the lyrics...

Jesus bids us shine with a clear, pure light
Like a little candle, burning in the night
In this world of darkness, we must shine
You in your small corner and I in mine!

I've always loved that hymn.  I picture a huge, dark room, and me in one of the corners, burning a small candle to fight the big darkness.  I can't light up the whole room, but I can light up my corner.  And that is what I am trying to do with this blog.  I can light my little corner.  I can write honestly and truthfully and in a heartfelt way.  That is something I am able to do, and it's my way of lighting my small corner.  It's my way of being tough, but true to myself.  And I'll keep doing it.

Intellectual Disability...Finding out what I already knew

Tony and I had a meeting yesterday with the developmental pediatrician that tested Janey a few weeks ago.  She, like many people before, hedged on giving us anything like an IQ score, but she told us that on the tests she did (which were actually for kids younger than Janey, as tests for her age would probably be totally unusable)  Janey tested as low as she could, beneath the 1st percentile.  She said at this point Janey could be diagnosed as having, in addition to autism, an "intellectual disability".  Which means, to use the older phrase, retardation.  She said that can't be diagnosed before age 7, which is part of why it wasn't diagnosed before.

So...well.  I already knew that, of course.  But hearing it still wasn't a great deal of fun.  I know Janey has skills the test can't test, but overall, I know it's correct.  The doctor said Janey can't be expected to ever read for meaning, to do much of anything ever academic, and that spending much time on academics is a bit of a waste of time for her.  She thinks Janey needs a different school placement.  I don't agree there, for now.  Janey will stay where she is at least until after 5th grade.  But I do appreciate getting a longer term view of what can be expected.  Which, frankly, is not a lot of progress.

I don't mean to sound like I'm giving up on Janey.  I know what the movie or book or dramatic response should be.  I should say "I'll prove you wrong!" and go on to work tirelessly with Janey every second, right up until the day she graduates from medical school.  But that's fantasyland.  I will never give up on Janey, but I live in realityland.  I can see it's extremely hard for Janey to learn.  I am devoted to her---to giving her the best life I possibly can within her limitations.  I don't think it serves her to try to make her be what she isn't.  I want to work to her strengths, and she does have strengths.

For some reason, all this has been making me think about religion, and how I wish sometimes I could be more of a believer.  This is partly because when I read other blogs, it seems like it's such a help to many parents of autistic kids.  I keep thinking about the phrases "God only gives you what you can handle" and "God has a plan"  I know those aren't Bible quotes, but they are said a lot by people that are believers.  I feel like whoever doles out challenges, God or fate or whatever, has given me a lot more than I can handle, or maybe I should say handle well.  You handle what you get, because what choice do you have?  But no-one gets my best.  I can't be the parent I want to be to any of my three kids.  I can't be the wife I want to be, or the friend I want to be, or the community member I want to be.  And if God has a plan, in some ways that makes me less likely to be a believer.  It seems like it would be a mean kind of God who would make plans that involve making a little girl autistic and intellectually disabled.  I know it's supposed to be part of a bigger picture thing.  But I don't think that's the God I would choose to worship.  I hope I am not insulting anyone saying this.  I have the hugest respect for people that believe.  I truly wish I did.  I can't make myself.  I wish I could.  All I can think of to keep a possibility of faith alive is that maybe it is part of God's plan that I don't believe right now.  And it's a little convoluted!

So, we go on.  Nothing has changed.  I heard what I already knew.  Janey is who she is.  I love her, as Mr. Rogers taught me to say, just the way she is.

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.

Beach Time

I'm up early, and was browsing around the internet and reading some blogs that other blogs linked to and such. Sometimes this gets me down. I feel like a lot of bloggers that write about their children with special needs have it all so together. Maybe it's because a lot of them are religious. They are very confident it's all part of God's plan. I don't have that comfort. I wish I did, sometimes. I know it might make things easier to feel like it's part of plan, like there is someone guiding me through this. But at this point in my life, I don't feel that way. I feel like all decisions are mine to make, and if I make them wrong, it's not because there was a reason for that in someone's plan, but just because of poor decision-making or bad luck or just random chance. Anyway, that's more of a side note.

As you can see from the picture, we went to the beach yesterday. It was a great time! I was comparing it to other beach days last summer or before with Janey that were very tough. She has always enjoyed the beach, but in the past showed her enjoyment by running away from us as fast as she could over and over. This time she actually stayed with us and calm enough of the time so that we could enjoy ourselves without watching her intensely every second (just every other second or so) Freddy watched her for a bit and both Tony and I got out in the water and swam, which we both like a lot. Janey dug some holes, and walked around along the edge of the water and generally had fun. At one point she said "I want to jump in the puddles!" which is something she says a lot, but she meant jump in the water, and it was nice to be able to say "You can jump in this big puddle ALL YOU WANT!" She picked up sand and held it and felt it in her hands, and dropped it and picked it back up and all the things she likes to do with dirt but usually can't. The beach is really an amazing place that way.

And of course I'm thinking about and wondering if it's the medication that is helping her be able to enjoy things. And why should it matter? But I feel somehow like it's the easy way out---like if I had done a better job making her happy without it, she wouldn't need it, and all the possible bad side effects on her growing brain. And I curse myself for thinking that---she is most certainly happier the last week or so than in years---not a frantic manic happy, but just able to in general enjoy things---and I think more open to learning, using a little more speech, making longer sentences---so what's the problem? It comes back to that feeling of responsibility, and also my own OCD type feelings that something good has to cause something bad. Like if it's easy, it must be wrong---that you don't get real help from a vial of medication. And of course I don't know if that's all that is working. It could be other things---she is out of school, and maybe school was harder on her than I realized. She is spending more time one on one with me. We are adjusting our lives more to her needs---the things we are doing are based on what she can handle and enjoy---not that we always didn't take that into consideration, but I think now it's the key factor in everything we do. And things certainly aren't perfect---she still has meltdowns quite often when she's tired, or overwhelmed, or who knows why.

So I should probably stop writing and get sleep while I can. And just be grateful for nice days like our day at the beach.

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.

Crying Day

Janey is having one of her famous cry all day days. We don't know why. We've tried all our tricks---feeding her a lot, giving her a bath, me just holding her, etc. It doesn't help that I've been sick for days, and at one point when I was holding her and she was starting to calm down, I started coughing my head off and then throwing up. So that didn't exactly work. Tony has taken her now in the car to pick up Freddy from a party he is at. We are giving a friend of his a ride home, and I guess the friend will get a baptism in fire in autism education. It's an awful helpless feeling when she get like this, for her I am sure and for us. She might be getting sick like I am, but she has no way of telling us that. It's one of those days I don't feel particularly equal to this challenge. I just want to rest and get better, but I can't. William was trying to complete an important application for a summer program, and he could barely hear himself think. It's one of those days I hate all those stupid saying like God doesn't give you more than you can handle. If God handed this out, I think He might want to rethink His method of judging what people can handle. Or the Holland story---if I ever book a passage to France or England or Italy, I better end up there and not in Holland. Holland might be fine, but at this point, I need a vacation and it better be to where I want it to be (if you don't know the Holland story, look up Welcome to Holland anyplace on the internet and you will find the sappy tale) I get feeling guilty, like I don't want Janey to be who she is. But that's not it. I don't think anyone wants to be sad and voiceless. I want her to have a fair shot at life. I want her to be able to tell me why she's sad, and let me try to fix it. And I want the rest of us to be able to live a life where we are not on eggshells all the time, and where there is a day in sight when we can have kids that are grown up and on their own. This is a lifetime thing. It's never going to happen. So some way or another, I have to make the best of it, for all of us. And most days, I think I can, but right now, I am not sure.