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Showing posts with label presents. Show all posts
Showing posts with label presents. Show all posts

Thursday, August 16, 2018

On Janey being 14, and a day when I was 14.

The birthday girl
Janey is 14 today.  She seems to be having a good birthday.  Both she and her brother Freddy, who shares her birthday (he is turning 21), like best the lowest of low key birthdays, so for once I am totally honoring that.  No parties, no presents, just a little singing of Happy Birthday and later, a candle in a tiny cake.  For Janey, a good day means lots of rides and lots of food she likes, and lots of us honoring her most used phrase lately---"Go away!"---so she can watch her shows without our annoying presence.

As Janey gets older, I seem to do more and more comparing of her teen years to mine.  I mostly enjoyed my teens.  I liked high school, I made some great lifelong friends, I was fairly happy.  That's how it is in my memory, anyway.  I think about Janey's life and feel sad that it's so limited.  She doesn't have friends.  She doesn't do anything with anyone but family.  To her, a big day is one with a car ride and a Happy Meal.  I want more for her.

To get some real world perspective, I decided to dig up an old diary and look at what my life was actually like at Janey's age.  I didn't write anything on my 14th birthday, but I found the next entry after that, about two weeks later.  It was interesting to read.  My life was not exactly a stream of exciting events.  I wrote that in World History, we played "new games" with Jud the Jester.  Who exactly Jud the Jester is is lost to history, although I sort of remember that new games were a thing for a while, non-competitive games, but what that had to do with world history is unclear to me.  I almost fainted in Health.  I do remember that---and I almost fainted again remembering it, how we were learning about compound fractures, complete with a photo.  I watched an After-School Special.  Although I didn't note which one it was, a quick bit of research showed it was "Where Do Teenagers Come From?"  My sister Carrie had her friend Ruthie over.  That was my day.  It sounds about typical for my earlier teens.

The most interesting part was what I wrote after I wrote about the day's events.  Here it is---"There are a lot of things that happen that I don't write in my diary.  Just mostly because I want to forget them, not remember them.  Nothing awful, you know, just not remember-type things."  That hit me.  Not that I remember what those things were, so I guess not writing about them worked, but it hit me that we do edit our memories.  A lot of life is just---living.  And some of life isn't great, not for anyone.  Somehow, realizing that made me feel better about Janey's life.  It's not a typical life, but I think most of the time, she's happy with it.  If she were able to write a diary about today, or about a school day, as I did, I imagine that it wouldn't be that different than mine---what happened in classes, what she watched on TV, a few things that get stored in long term storage memory like the almost fainting, and other things that get purposefully or not kept out of memory.

Janey is not me.  She wouldn't be me, even if she wasn't autistic.  She is her own person.  She doesn't hesitate to let us know what she likes or doesn't like.  I am glad of that.  She's happier today than I remember her being on any other birthday, because she is doing the things she likes.

And so, as Freddy joins his brother William in full adulthood, I'll keep trying to give Janey the best teenage years I can---her own version of good years, not mine.


Wednesday, December 20, 2017

Pre-Christmas thoughts

"Does Janey look forward to Christmas?"  A friend asked me that a little while back, and the question has been occupying my mind quite a bit.  At the time, I said something like "I'm really not sure", but as I think about it more, I am pretty sure the answer is no.  Janey doesn't look forward to Christmas, because I don't think she really knows what Christmas is.  

Our tiny tree
I'm sure here a lot of people would disagree with me, and maybe I'm wrong.  Janey knows what Christmas MUSIC is, at least a little, and she would probably be able to say who Santa Claus is, and she could identify a Christmas tree, or a wrapped present, when given the choice of 4 pictures.  But in terms of it being a special day, one with rituals and expectations---no.

I've dealt with this various ways over the years.  Some years, I just went ahead and sort of pretended that she did get Christmas.  I got her presents, I had her hang a stocking, I talked up Santa Claus.  Other years, I didn't do as much, and concentrated more on the boys, or on just enjoying the season in general.  I don't think it made a lot of difference what I did, except in that Janey picks up a lot of her emotional cues from us, and probably she was happier in general when I was more relaxed and cheerful, whatever worked for that in a particular year.

This year, I'm not feeling Christmas a lot.  We got a tiny, tiny tree---a tabletop baby one.  No stocking are going to be hung with care---the boys are old enough for Santa to skip our house, and Janey---well, she's never once actually taken anything out of her stocking on her own, or shown any interest in what was in it, so I don't think she'll mind a bit. The same is true of presents---she's never opened one on her own or cared what was in one once opened.  She's have a couple under the tree, from other people, but I'm not buying anything for her myself.  Instead, we'll do as we have done for a while---her present will be to buy videos to stream on Amazon TV throughout the year, when one of the streaming services decides to drop something she's gotten addicted to.

I don't think giving Janey a typical Christmas, when I tried to, was ever for her.  It was for me.  It didn't hurt anything, but it wasn't something she cared a bit about.  I wonder how many other times I've done things "for" Janey that weren't for her.  As long as those things are benign, as long as she's neutral about them, it's not really an issue, but sometimes, it's harder to tell than it is with this Christmas issue.

Christmas is something different for all of us.  A week ago, Janey sang most of "O Holy Night" to me.  I cried---of course I cried.  That was Christmas for me, and from her happiness while singing it, maybe for her too.  I hope all of you and all your girls and indeed all of your family finds your own Merry Christmas this year.

Friday, August 18, 2017

Janey is Thirteen

Janey is officially a teenager.  Her birthday was on Wednesday.

Janey blowing out candles
I've been having a bit of a hard time with this birthday.  The day itself went well.  It went well mostly because we didn't really do anything for it.  That was a conscious decision.  Janey's birthdays have a checkered past.  She doesn't like things to be different.  She hates wrapped presents.  She is unpredictable with gatherings---once in a while, she is okay with them, but more often, gathering around and singing and candles and so on upset her.  My wonderful friend Maryellen, who was present at Janey's birth, made her a cake and had us over last weekend and we had candles and a sing then, so I let that be the cake of the day.  On the actual birthday, we had no cake, no presents, no ceremonies, and I think Janey enjoyed her birthday more than she has almost any other year.

Janey on her birthday morning
Some of you might know that Janey's birthday is also her older brother Freddy's birthday.  Janey was born on his 7th birthday.  That gave the day a weird distinction.  From 6 in the morning until 4 in the afternoon, I had no teenager in the house, in the middle of an otherwise unbroken 17 year stretch with one.  Freddy prefers very little birthday ritual too, so his 20th birthday, shared with his sister, was also low-key.  The one ritual we did enjoy, though, is a family dance to the unofficial official birthday song of their shared birthday, "Birthday" by the Beatles, the only song I know that talks about a shared birthday.  We all danced to it, and I have to admit I was crying during much of the dance, a poignant kind of crying.

Janey and her brother Freddy
The way we passed the birthday reflects two sides of my feelings about Janey turning 13.  On one hand, I feel like we've somehow passed some kind of barrier.  We know Janey.  It's taken a long time to really know her, but I think we do now.  We knew what she would like on her day.  She liked having lots of bacon made by Daddy, a trip to McDonalds to get Freddy a birthday breakfast and Janey hash browns, another trip to McDonalds right at 10:30, the minute they started serving lunch
, to get her nuggets and fries, lots of videos, lots of snuggling, lots of music and car rides.  We know Janey well enough now to be able to give her the kind of day she loves, without trying to make it the kind of day I picture a girl's 13th birthday being.

However, the day to me also felt strangely like some kind of deadline.  I wasn't anticipating feeling this, but I did.  I think of myself at 13.  That was the year I entered high school.  I can picture myself very clearly that year, and although of course there were many life happenings far ahead of me still then, in a very real way I haven't changed.  I was me---the me I still am.  And Janey is Janey, the Janey she is now and will be.  And the birthday reflected that Janey.  She might or might not have understood it was her birthday.  She did not have friends over---she has no friends.  She didn't long for some special teenager present, like a phone.  It is not in her realm of knowledge to even know she could want something like that.  She didn't sign up for Facebook, as I remember Maryellen's daughter Julia eagerly doing on her 13th birthday.  She doesn't know what Facebook is.  I picture her life as a line that at junctures like this birthday takes a different route than most life lines.  It is, in a computer word Freddy has taught me, a hard fork, one that is never coming back to the main line.

When I think back on this birthday, I hope what I remember is all of us dancing to the Beatles, laughing and clapping and singing in a way that no only includes Janey, but celebrates her.  And my wish for her is a life full of moments like that, shining moments in her own personal life story.

Friday, December 11, 2015

Christmas, not so much presents!

I recently asked if people on the Facebook group that is a companion to this blog wanted to talk about their girls at Christmastime (if they celebrated Christmas), and many did---thank you to all of you!  (and if you are reading this and have a girl with autism in your life, and you aren't already in the group, I'd love to have you join---it's a friendly and welcoming place!)

A few things stood out about our girls and Christmas.  One is that it's not about the presents, for the most part.  Another is that it can be an overwhelming time.  But with those things kept in mind, most of the girls and their families did find a way to enjoy Christmas and make it a special time.

The part about the gifts was striking to me, in that most of the girls were like Janey---not big fans of gifts.  Of course, there are exceptions, but for the most part, gifts were one of the toughest parts of the season.  In a way, that might sound like every parent's dream.  We hear over and over that Christmas isn't supposed to be about getting presents, and of course it isn't, but presents are a big part of it, and to have a child that no only doesn't much want any presents but can even be actively upset by them is hard.

There were some great ideas people have.  One person talked about making the Christmas stocking full of small unopened toys, instead of having presents under the tree that had to be opened.  Another idea was having one box with all the presents in it, to reduce opening.  A great idea was giving a little present each Sunday of Advent, to practice.  An important thing is finding presents our girls actual like---like sensory toys or food.

I've always struggled with presents for Janey.  Part of it for me is a feeling of equality.  I don't want to just give her brothers presents and not her (although, to be honest, Janey would not notice or care).  And I ENJOY getting toys and gifts for Janey.  But she hates opening presents.  She doesn't get it, and it is not fun for her.  This year, there was a wonderful moment when I asked her what she wanted for Christmas and she actually answered "a book", so of course there will be a pile of books for her under the tree, but I won't wrap them.  I will give her one wrapped present---a tabletop drum set.  And her stocking will have a lot of chocolate in it (yes, I know I've said in the past chocolate makes her crazy and insomniatic, but she loves it, and I want her to get something she loves)  I won't try to make her watch her brothers open things, and I won't be upset if she shows no reaction to anything she gets.  That's the plan, anyway.

I think one of the most stressful parts of Christmas for us as autism parents is that our kids often have a hard time sharing Christmas with extended family and with friends.  We can control things to some extent at home, but it's hard when visiting others.  And it's hard sometimes for grandparents and other relatives, too.  They want to share Christmas, to give presents, and it seems to go against what is expected that the very sharing and hospitality and presents can be a source of stress.  A lot of families just don't make visits, or if they do, it's to one place each year.  We go every Christmas Eve to a dear friend's house.  Janey knows the family well, and I think knows that is the plan.  She is an early to bed kid, and so we have a lot of the night after she falls asleep for the our two families to have time together, but while she's awake, they know her and make sure there's food she likes and routines she understands for her to enjoy.  That means a great deal to me.

What do our girls like about Christmas?  A lot of girls like the tree and the decorations.  Traditions also seem to fit naturally with autism!  They are routines, after all.  And for Janey, and some other girls, the best part of Christmas is the music.  Starting at the beginning of November, I switch my iPod to an all Christmas list.  I know a lot of people hate Christmas music too early, but for Janey, that's a compromise---she'd listen all year, and at least keeping it to two months makes it a little more special!  I sing carols to her every night at Christmastime as she goes to sleep.  She seems each year to pick a carol or song that she loves best.  This year, it's been "Hark the Herald Angels Sing"  She especially seems to like later verses of carols.  She's gotten very annoyed with me a few times for not remembering all the verses of "We Three Kings", especially the depressing one about sorrowing and dying!

One of the most amazing and wonderful moments ever with Janey, one of those I hesitate to mention almost because it seems like one of those "autism is magic" stories that in daily life don't really happen that often---when Janey was about 6, she heard the Hallelujah Chorus from The Messiah for the first time, in the car.  She was quiet and looked to be in awe for the whole thing, and when it was over, she burst into applause, clapping for a long, long time---something she had never done before for a song, much like the first time George II
of England heard it and stood up in honor, which has become the traditional thing to do.  It was a moment I'll remember all my days.

Autism never takes a holiday.  That can be very tough at times like Christmas.  It's hard having to adjust plans, presents, visits and expectations for the whole family to avoid meltdowns, but not doing so is even harder, as a meltdown filled Christmas is not fun for anyone.  Overall, I felt encouraged by hearing from others about their Christmases.  We seem to find a way to find joy in the season even with the challenges.  It's not easy, but not much of this autism parenting gig is.  I hope all of you have a wonderful Christmas and/or New Year.  We are all in this together, wherever in the world we might be, and that truly does help.  Merry Christmas.




Friday, December 26, 2014

No Christmas Miracles

I am not sure why I always hope Christmas will be a better day for Janey than it is.  I guess I have a deep seeded, secret, well-hidden belief in Christmas miracles.  I think if I do things right, and believe really, really sincerely, something will work and Janey will have a wonderful Christmas.

Needless to say, the miracle didn't happen again this year.  I won't say it was a bad Christmas, because it was a very good one, in ways that were apart from Janey.  My parents were very generous and therefore the boys each got a present they very much were surprised by and loved.  The kindness of so many people allowed me to not have to worry about medical bills much, so I was able to get the kids some presents they very much liked from us,  too.  And we even had a bag of presents from an organization that provides help to families with disabled children, including hats and gloves for the boys and several presents for Janey, one of which she hasn't even opened yet.  The boys got into the spirit and gave us presents, we did our traditional cheese and cracker tasting, we had a great night at my friend Maryellen's house on Christmas eve, we had a beautiful tree and so much was terrific.  But Janey....

If the mood stablizers are working at all for Janey, they are working to stablizer her mood as bad.  She was cranky, screaming, hitting almost all day yesterday.  There were a few very brief happy moments, mostly while eating, but most of the day, it wasn't good.  She opened a few presents with extreme half-heartedness, mostly giving up halfway through unwrapping.  She did like a giant SpongeBob I gave her, and a fuzzy Care Bear that was in the present bag, but mostly she ignored all presents as usual.  Her screaming was the backdrop for most everything we did.  It was very wearing.

It's on days like Christmas I most feel for Janey's brothers.  They didn't sign up for this.  They deserve a great Christmas.  We are Janey's parents.  We DID sign up for this.  We are responsible for her.  But they aren't, and so often, their lives are so affected by her.  They don't say that.  They both thanked us for a great day.  They are wonderful boys.  But sometimes I feel awful for them having to always come second.

I think we are weary.  It's been a very long few months.  So many things have been tough, and then there has been hope followed by disappointment.  The Bradley Hospital stay turned out to be just respite---nothing long term was gained.  The new medication seems like a flop so far.  The state insurance help is now just another piece of annoying bureaucracy I soon need to figure out.  And there is always the screaming, the crying, the hitting.

I don't want to write such a negative post today.  If it were not for the amazing support and kindness of so many people, I think this post would not just be negative, it would be despairing.  And we are not despairing.  We are tired, we are discouraged, but we are hanging in there.  I guess that's good, for now.

So--a few pictures of our Christmas, and my hope that all of you had a wonderful Christmas, if you celebrate it.  Let's all look to the future and keep hope alive for 2015.




Saturday, July 19, 2014

Low Functioning Autism and Toys

If you are a parent of a child with low-functioning autism, everything I'm going to say here is probably preaching to the choir.  You know what toys work for your child, and although they might not be the same ones I mention here, you know how hard it is to find toys they like.  I'm writing more as a response to quite a few lists I've read in parenting publications, titled something like "10 Great Toys for the Child with Autism!"  Those articles drive me crazy.  They are nearly always aimed at high functioning autism, and they include toys that not only would have absolutely no appeal to a child like Janey, but would sometimes be actually dangerous for her and those like her---things with tiny pieces, things that could be eaten, etc.  They also seem to be aimed at what the child SHOULD learn, not what they would enjoy.  So often, they have suggestions like co-operative games, which would be great as a teaching tool at school, but are generally not at all what the child with LFA like to do for FUN.  And toys should be fun.  So here's my response list, one you might be able to give a relative or friend that wants to get your child a toy they (possibly, no promises!) will enjoy.



1.  Fidget Toys  I could almost end the list right there.  The absolutely most successful kind of toy for Janey, and for a lot of kids like her, is what is called a fidget toy.  It's a toy that can be handled, twisted, fiddled with, pulled on, in general, fidgeted with.  The pictures tell it better than I can.  I love having a box of these around for Janey, to pull out in difficult moments or what we have to wait for a bus or otherwise sit around.  These toys are often sold, strangely, by office supply stores, as a lot of adults like them at their desks.  I don't generally like to mention any specific sites or stores, but I've ordered from these folks at Office Playground  and they have a huge selection of fidget toys and good customer service (they didn't ask me or pay me or even know I'm giving them a shout out!)

2.  Pin Art Toys  I have gotten Janey quite a few of these, and she loves them to death!  They are fascinating to her.

3.  Contained Water Toys  I made up that category title as I don't know a name for this type of toy. Basically, it's a toy with water inside, one you can move around to manipulate the water, which often has drops of dye in it, or waves made from dyed water.

4.  Various Fisher-Price Toddler Toys  And other companies too, of course, but the ones I've found that Janey likes best are by Fisher-Price.  She adores their Roll-Around toys, little balls with things sealed inside to look at and shake.  And one of the biggest hits we've found is a line of toys I don't think they make any more, called Amazing Animals.  They are larger sized hard plastic animals that are jointed, and make a very satisfying clicking sound when moved around.

5.  Musical Toys  This is where I have to be cautious.  Although Janey adores music, often music toys are a little beyond her, and she completely ignores them.  I've gotten all kinds of toy pianos, and she seems to hate them, because she wants her music NOW, and it's a little more than she can do to learn to play them.  I've found she likes toy drums best.  Anyone can drum at a starter level and make an enjoyable sound!  She also SOMETIMES likes toys that play music, but in her case, if the songs are off-key or not sung as she likes, it makes her crazy, so I tend to avoid toys that might do that!

6.  Sensory Blankets  By this, I mean more blanket squares.  These are squares of usually very, very soft fabric, with often tags or other interesting textures sewn in.  They can be held, rubbed, sucked on, used good and hard and then washed.  Janey loves them.

7.  MAYBE Toys  There are a few toys that might be great, but that you would want to check with the parent about first.  They include Play-Doh, bubble stuff and bubble wands and drawing supplies.  You want to make sure the child doesn't eat Play-Doh.  Janey does, very much so.  She loves the stuff, but she loves it like an all-you-can-eat buffet, so we don't get it.  Bubble stuff is great, but again, some kids drink it.  Janey doesn't, but you'd want to check for sure on that one!  And art supplies----Janey has zero interest in drawing, but a lot of kids with autism do like to.  If you get art supplies, keep it simple!  Get paper, markers, crayons---not an elaborate paint set.

DON'T GET  And of course, like with everything I write her, I'm writing from my own experience.  But in general...Don't get things with lots of pieces.  They are going to get lost, or eaten or at the worst choked on.  Don't get games.  Most of the time, kids with LFA don't understand them, and are not entertained by trying to learn them.  Don't get books.  It pains me to say that, because I love books more than anything.  But it's a rare book that really catches on, and most books, especially pretty books you wouldn't want to be ripped up, are just going to sit on shelves.  Don't get videos.  Not that the kids won't love them, because they very well might, but because most kids with LFA already have about a million videos.  Don't get dolls or stuffed animals.  Imaginative play is not the strongest suit for kids with autism.  I do know of several girls that love dolls (I'm think of you, Jamie and Reagan!) but dolls are also pretty easy to find, and another gift would most likely be more appreciated.  And don't get food.  Many of our kids are on special diets.  Recently, we eliminated chocolate from Janey's diet, and I suddenly understand far more than I used to how hard it is when someone brings it into the house!

I imagine this list, strangely, might be one of the more controversial blog posts I've written!  I know I don't speak for everyone.  Please feel free to disagree and add your own suggestions.  But I hope these will help someone trying to buy for the child with LFA that they love!








Friday, December 27, 2013

Little Triumphs of Christmas

Christmas has come and gone, and overall, it was a good one.  I was very tense about Christmas this year, as I guess in some ways I always am, but it seemed like more this year.  However, I used a "fake it until you make it" method (a phrase a friend told me that I very much like) and kept plugging away at Christmas stuff, and when the day came, it all seemed to work.

As you can see from the pictures, Janey actually opened two presents, and looked at what was in them.  That was huge for me.  She wasn't that excited, but she did seem to get the process, and was pleased with her nail polish and her plush Sesame Street count---the presents shown here.
You can see she wasn't too into her stocking, but she did take a few things out of it and looked at them briefly!
I think the best part of Christmas with Janey this year was Christmas Eve.  As we almost always do, we went to the house of a family friend.  The picture above is our traditional picture of our kids and the friends' daughter, in front of the tree.  This year, it was going to be a little bit bigger crowd than usual, and we weren't sure how Janey would do.  She did quite well!  She did something she sometimes does when there's a lot of people---she surveyed the crowd and found someone she liked the looks of, and sat on their lap.  In this case, it was the girlfriend of our friends' son, and the girlfriend's mother, people she had never met before.  They were wonderful with her and pleased she picked them, I think!  She did well with the two year old boy that was there, the grandson of the friends, which I had been nervous about---Janey can sometimes be aggressive with younger and smaller children, but she mostly ignored him, although at one point, while we all held our breath, she briefly put her arm around him.  There was one screaming incident there, when Tony had taken her out of the room to calm her down.  Tony and I both realized that how he and I handled that screaming made a different.  We stayed calm and acted like it wasn't a big deal.  I said something like "This screaming isn't uncommon.  It's fairly normal for Janey" and I carried on as if it wasn't happening, and that seemed to relax everyone about it.  We've realized, over time, that how we as parents react to things Janey does sets the tone.

The Christmas Eve night and Christmas day made me realize that Janey is making progress.  It's slow, but it's there.  In little, small ways, she is becoming more mature, and we are becoming better at being her parents.  Some days it doesn't feel that way at all, and if you were watching us from outside, you might not see it.  But we are learning all the time, and so is she.  As we look to the New Year, we feel hope---hope mixed of course with fear, with some sadness, with challenges and with acceptance of the life we have been given, but with hope nonetheless.

Tuesday, December 17, 2013

Christmas Blues

I know I'm not alone in having a hard time with Christmas.  Many parents with autistic kids do, as well as many other parents, or non-parents---many people of many kinds.  But I'd dare to say it's harder for parents raising autistic kids than it is for most.  I've been feeling it a lot this year---a very lot.  I feel like I'm going through the motions, trying to do the things you need to do for Christmas but not feeling them in any way.  I've been trying to figure it out---why especially Christmas?  I think it boils down to the isolation autism brings.

"Christmas is for children".  That's a phrase you hear a lot, and something I believe.  Once you are an adult, your main role is giving a great Christmas to your kids.  But what is your role if your child could care less about Christmas, if your child in fact doesn't have any real awareness of Christmas?  That is Janey.  I am quite sure I could skip the whole bit and she wouldn't care.  I could not have a single present for her under the tree, and she wouldn't even notice.  I could not have her hang a stocking for Santa, and it wouldn't bother her a bit.  It makes it all feel a little meaningless.  I will still have presents for her and a stocking, of course, but who am I doing it for?  I guess it's for me.  In a way, she might be happier if I DIDN'T give her a present or have Santa come.  She hates to open presents, and she has to be urged to check out what is in her stocking, sometimes to the point it annoys her. Christmas music is the only part of Christmas she seems to enjoy, and she would enjoy that just as much in July, with no holiday associated with it, if I played it then.  And so, if Christmas is for children, and your child doesn't care about or even like the Christmas things, what is Christmas for?  (especially if you aren't very religious, and I am not)

All around, you hear people talking about what their children want for Christmas, about how their kids are counting the seconds until Santa comes.  It's yet another part of life that autism steals from both Janey and me.  Writing this, I feel sort of petty.  I have my boys, and when they were young, they did all the childhood Christmas stuff, and I enjoyed it a lot.  So why is it so hard now?  I can't really explain.  Maybe it's accumulated lack of sleep, or school worries, or the constant edge I have, waiting for Janey's next outburst.  Maybe it's unseemly jealousy, of all the people with children that seem to be to be incredibly perfect, people that often don't seem to appreciate the amazing gift that that is.   Maybe it's the growing realization that Janey is not progressing in many significant ways, that what we have now is very likely what we will have for life.   But a big part of it is sadness for Janey.  I am sad she can't anticipate Christmas.  I am sad that presents scare and not delight.  I am sad she will almost certainly never have children of her own to give a Christmas to.  I am sad that a week from tomorrow will be like any other day to her---a worse that usual day, probably, because it will feature a changed routine.  I am sad for all that Janey will never feel or experience.

It might sound fake to say this after writing all I have, but I do wish anyone who reads this that celebrates Christmas a very merry Christmas.  I am having a tough year, but I am going to keep working on finding a way to make Christmas special for Janey.  I hope you all have found a way, and that you find joy and peace this year and always.

Friday, August 16, 2013

Birthday ups and downs

Janey is nine today.  Most other years, on her birthday I wrote sort of a summing up of how she was doing.  Today, though, I thought I'd write more about her birthday itself, as a way to share the ups and downs of special days with a child with autism.

The last few days, I've been talking a lot to Janey about her birthday, trying to get her prepared.  I knew they were having a party for her at summer school, as it was her last day there and her birthday, and I wanted her to get used to the idea.  I sang her the birthday song quite a bit, which she sometimes has a hard time with, as do very many kids on the spectrum.  I think with Janey, part of it is that the song is often sung off-key, and that upsets her a lot.  But it's also a time when all attention is focused on her, and that can be too hard, too.

I decided I wanted Janey's birthday to be as low-key as possible, and wanted to do things she would enjoy all day.  The time while she was at school, I planned to focus on her brother, who shares her birthday.  He turned 16 today, and I always want to make sure his birthday is special as well as Janey's.  As their needs are obviously very different, it can make for some tough decisions.

Janey started the day in a mood.  She didn't like the clothes I tried to put on her, and threw a tantrum and screamed.  I decided what clothes she wore was less important than her having a calm day, so I let her choose her clothes herself, and she made a pretty nice choice, and was happy by the time we left for school...  While she was at school, the rest of us went to the mall, and got Freddy his present, a couple pairs of sneakers.  I managed also to get a few presents for Janey, at a nice store at the mall called Marbles, the Brain Store.  I went there because I'd read they have a lot of toys that work well for autistic kids, and they did---most for higher functioning kids, but I got Janey a very cool circle of wooden balls of various colors, which is sort of a big fidget toy, and also a wooden robot that can be folded up into a square.  No pieces to lose with either, they look nice and they are something she can play around with.  I felt very happy to find them.

Then we went to pick up Janey, and it seemed she had a great day.  They really did it up for her!  Here's a picture...



 of Janey with her teacher and one of her paraprofessionals.  They gave her cake, pizza, a balloon, a bag of presents---she is a lucky girl!   She left the school happily, walking along with Freddy, her birthday twin.

Then we went to a friend's house.  She wanted to give a present to Janey and Freddy.  That was probably the high point of Janey's day, as she loved the present, a giant pillow (thanks, Christine!!).  She was happy there, but we just stayed a short time as we were headed to the store for cake.

Janey was good at the store and picked out her own cake, and we headed home for a little family party with just us and Janey's uncle.  That is when things started to go downhill.  I guess Janey had had enough birthday.  I think she was tired, and just wanted cake without all the ceremony.  We did the candles and sang, and I tried to get a picture of Janey as we sang.  I have always vowed not to take pictures of Janey as she cries, but this time, it just happened.  I have been trying to decide whether to put this picture on here, and decided I would.  I've always tried to be honest when writing, and Janey's screaming and sadness are a huge part of her life.  It would seem kind of untrue to her to only post happy or neutral pictures.  So here's Janey, very sad about the birthday song and candles...
Janey actually cheered up a good deal in just a minute after that, when it was finally time to have the cake.  She likes blowing out candles, and she did her best, with Freddy helping too, as they shared a cake for the first time ever!  (I got a second cake for Freddy to have at a party with his friends later this weekend)

After the cake, Janey had had it.  We were upstairs at my brother-in-laws for the cake, so I took her downstairs.  She screamed and cried for quite a while.  Finally I thought to say to her "Your birthday is all over now!" which is not what you'd think the birthday girl would want to hear, but she looked hugely relieved!

It's so hard to know how to handle occasions like birthdays with Janey.  I wonder sometimes if it were just Janey's birthday, and not Freddy's too, if I would choose to almost not celebrate it, or keep it so low key as to almost not be detectable.  But somehow that doesn't seem like the right thing to do.  I want Janey to have memories of a cake, of presents (I gave her the presents just a little bit ago, unwrapped as she prefers, and she looked them over, but wasn't quite ready to be interested in them)  She certainly loved the pillow, and the cards she got, and she seemed to like the party at school.  Maybe overall she didn't cry much more than a lot of days lately, but it felt like more because I had been wanting so much to make it just a happy day for her.  But that is often impossible.  I guess I just can do what I always try to do---do the best I can and hope for the best.  

Happy Birthday, my sweet nine year old girl!  



Friday, December 28, 2012

Strange Attractors

Although Janey will often ignore things that you want her to focus on, once in a while, she is strangely attracted to certain objects.  She will find them wherever they are, and will resist all attempts to keep them away from her.  This year, it was one present under the tree.  It was for Tony, and was wrapped in the same paper as many of the other presents, was a simple box shape, was nothing that stood out in any way.  But as often as I put it back under the tree, she took it out, held it and then moved it to a new place.  She didn't try to open it---she just was drawn to it in the wrapped form.  Today, I realized Tony never opened that present, because by Christmas it was no longer under the tree.  It's no longer anyplace that I can locate.  It's very possible that it wound up in the trash, as sometimes that is a place Janey puts objects she is interested in.  I got a brand new pair of sneakers a few years back that she took a fancy to.  I only wore them once before one of them disappeared, and despite a housewide search, was never seen again.  I think it had that same fate as the present.

Lately Janey has been drawn to my camera.  I tell her "THAT'S A NO!" in a loud voice whenever she gets close to it, but usually if she grabs it, she just holds it.  I had no idea she actually knew how to use it, not until a few minutes ago, when I heard a tell-tale "swoosh" sound it makes to imitate the old time sound of film being advanced.  Janey was standing next to me taking a self-portrait.  I took it away, spoke to her firmly, but couldn't resist seeing what she had taken.  Several of the picture were of her finger firmly pressed against the lens, which is just the reason she can't use the camera, but 3 or 4 were pictures of herself.  That impressed me a little---she knew how to turn on the camera, knew she needed to turn it around to take a picture of herself, and even kind of how to frame the picture.  I might get her her own heavy duty kids camera.  In the meantime, here's a few of the self-portraits...


Tuesday, December 25, 2012

Christmas night

So Christmas 2012 is almost over.  As is almost always the case on Christmas night, I feel a little let down.  There's such a buildup to Christmas, and it's over so fast.  But it was a very nice one.  We had a great day, and gave the kids more presents than we usually do---we are usually very restrained in that, but I decided this year to put more focus on getting them, especially the boys, things they wanted and needed.  It was fun.  We had a huge amount of special food, a great visit last night with our dear friends for Christmas eve, Janey and I had as much Christmas music all year as can be imagined, and overall, it was a very good Christmas.

The picture is Janey watching the Christmas karaoke VHS we watch every year at our friend's house.  It's kind of a joke with the kids now, as it's very hokey, and has very cheap visuals, and does strange versions of each song, and then once they've done the long, long song, a screen comes up that says "Now everyone sing!" and we sing it all over again.  Lots and lots of laughs, but lots of fun singing together too.  Janey had been napping, and woke up when we were singing, and she was in heaven---it was her dream to wake up to a room of people belting out Christmas music!

Still, with all this being said, there is sadness for me at Christmas.  I don't think it will ever totally go away.  Janey has no real awareness of the holiday traditions.  She doesn't get Santa, she doesn't have any curiousity or interest in her presents, she can't count the days until Christmas, she isn't sad it's over because in most ways she didn't really understand it was here.  She was manic in the night, laughing hysterically for hours, probably because we weren't careful and forgot and let her have lots of chocolate milk, and chocolate and other caffeine is the one solid food connection I've ever found with her---it makes her crazy way out of proportion.  She cried at points today.  We were all exhausted by afternoon, but we couldn't nap, because she had to be watched.  She had pullup issues.  She was, basically, herself.  And she always will be.  She is delightful, sweet, interesting, but she is also autistic and intellectually disabled.  She is never going to get Christmas the way I dream of.  Like so many things, it's my dream, not hers.  It's my sadness, not hers.  But my latest way of thinking is to admit the sadness, and try to move on from it.  It makes me sad that she doesn't understand Christmas.  It makes me very sad.  But Christmas isn't her getting it.  Christmas is, in the words of the Grinch, a little bit more.

Monday, August 2, 2010

Two weeks until six

Janey will be six two weeks from today. Birthdays always bring up a nest of feelings. Every year, I think to myself "Maybe next year she'll know what a birthday is, look forward to it, get excited about it". I think this year I'll stop thinking that. I get with her like people get about getting older---I don't want her to get to be older, because that's just putting her further from where she "should" be mentally. That's a bad thought, but a truthful one.

Presents are another nest of bees. She already got one present, from the very wonderful lady who has volunteered to work with her this summer. It was so nice---a fairy wand that is perfect for her, and wooden bears you can change the expressions of. And of course Janey had the typical gift reaction---freaking out, screaming, throwing it around. And the woman was hurt, despite trying not to be. And I was mortified. And of course within an hour, the fairy wand was her favorite thing ever---she's loved it right to death already. But presents are tough---they aren't expected, they require a reaction she doesn't understand, they are nightmares for her in some ways. As would be a typical birthday party. And that's fine---for her. For me, it's harder. I still hold onto the dream of giving her a little girl party, with some special presents that she will be thrilled about. I dream of getting the American Girl catalog and going through it with her page by page, talking about what we would order if we could, and maybe picking out a few special thing to get, and some Christmas blowing all my money and buying her a doll and furniture and it being something she remembers always....and it's never going to happen. And I need to get over that.

I ordered her presents from a web site I should give a shout-out to, for other parents of autistic kids. It's officeplayground.com They are aimed at little toys for use in offices, but they realize a lot of the same toys work for autistic people. They have all kinds of "fidget" toys, things you can play around with using your hands, like stress balls, Tangles, those toys with water inside that looks like waves, etc. Their prices were good and I ordered her about 10 little toys. I hope she likes them. It felt like a realization. I didn't try to get her typical 6 year old toys, because that's what I wanted to get. I tried to get her something she'd love. I need to do that with as many aspects of her life as I can. She fights such an uphill battle just fitting into this world; I don't need to add to it.

Her birthday is also Freddy's birthday---he will be 13. Maybe that all was arranged somehow---that I'd have another birthday the same day. Who knows? Freddy wishes he had his own day! He's ready to be a teenager---he's been one for a while. It makes both their birthdays very special to me. I'm so lucky to have them both, and their brother William.


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Thursday, January 8, 2009

The morning with Janey

Morning started about 2am---Janey woke up ready to have fun. There is no getting her back to sleep when she gets like this---she is sort of manic. Tony and I took turns sleeping and trying to get her to sleep. She fell back asleep about 6:30, and slept until about 10. So I had a restful time which I needed after the short night. When she got up, I let her wake up gradually, as sudden wakings are not her thing. Once she was all the way up, I gave her breakfast. Then I tried to sneakily read her a book, by reading it "to myself", but she caught on and threw a fit. She hates to be read to. Then we played kitties for quite a while. Mostly this is her saying things about them "The kitties are awake", "The Kitties woke up". I did something that upset her, so it made Stripe Kitty upset, and I had to hold Stripe Kitty for a long time. Janey makes sure I am holding her right, with 2 hands. I do to kitty what I would do with Janey when she is upset---sing her songs, especially When You Walk Through the Storm, and pat her. I take this chance to talk to Kitty about things that might be upsetting Janey, and Janey does listen but who knows what gets through? Then I tried a show on Disney Channel, but that was not in Janey's plan so she threw another fit. TV off. Then we had lunch. Janey then noticed a boxed present from Christmas, a Calico Critters kitchen. It has been making her upset looking at it for days. I finally decided to just open it up, as it couldn't be worse than how upset just looking at the outside of the box was making her. She was not pleased, but paid attention as I took out all the adorable pieces. A dumb present from me, I guess, but it's the kind of thing I wish she liked, and she does like the fuzzy Critters, but not the furniture, I guess. She tried to eat the play toast, I think it's not that she thinks it's real but it's a way of showing how mad she is. After a while with me playing and her whimpering and watching, she started saying "I'm stuck! I'm stuck!" which means she is upset about something and it's stuck in her head. I put all the toys away. Now she is playing with some of the furniture I just put away. Often it's that way, I have to almost force her to try new things, and then later she likes them.

It makes me think reading this that it sounds like I am always trying to get her to do something she doesn't want to. But if I just let the day go except as she liked, it would either be (if it's a TV day) her watching TV for a long time, or more often, her repeating phrases and looking at her hands and crying. She is upset either way, so I do try to give her something new to do. It makes me so upset that I can't make her happy. I don't know what to do a lot of times. Now she is saying "Somebody stole my sock drawer! It was you! It was Ja-Cai (a boy in her class she talks about a lot"

Time to get ready for school, where she is almost always extremely happy.