Friday, August 26, 2016

The Weeks Inbetween

Janey starts school in a week and a half, on the Thursday after Labor Day.  Boston starts later than almost any school I know, but then of course they also stay in school much later, into late June.  Of all the weeks in the year, I'd say these weeks in between summer school and regular school are the longest feeling.  Especially this year---we had the early summer excitement of our trip to Ohio, and the later summer excitement of the big wedding, and now...nothing.  It's very, very hard to keep Janey happy during weeks like these.  Tony is at work, William is back at college and although Freddy is helping a good deal, he also is spending a lot of time with friends before he and they also go back to college.  So it's mostly Janey and me.

How do I fill the days?  I'll be honest, they have mostly been filled with TV and videos.  I don't know what I'd do without them.  It's not that I don't want to do other things.  But taking Janey anywhere on my own is so tough.  Yesterday, we did a trip to the grocery store, and that wasn't even just me---Freddy went too.  Lucky that he did, because Janey decided to fling a jar of salsa she wanted into the cart.  It might have been okay, but it hit a jar of spaghetti sauce and WHAM.  The cart and floor and all the food we'd already gotten was covered with salsa and sauce and glass.  And Janey was very excited by it all.  Freddy stayed with the cart as we waited for cleanup, and I took off with Janey to another section of the store.  We had planned to buy a lot more, but we grabbed a few things, salvaged what we could that was covered with sauce, paid for the lot and the broken stuff, and took off while the getting was good.

Early in the week, another big exciting trip, to the Rite-Aid drug store.  Janey was enjoying herself and being good until something upset her, who knows what, and she started to scream the ear-piercing scream.  It took all the calm I had to get her in shape to quickly buy my stuff and again, get out of there.

We've done some walks.  That's tricky too, as Janey will suddenly decide she's had enough, and that means she doesn't want to walk back.  I live in fear she'll get upset enough to jolt away from me and get hurt.  So we have to keep the walks extremely short, within sight of the house.

At home, I mostly serve as a show changer.  Some of Janey's shows are on Netflix, some on Hulu and some on Amazon.  Switching between them is a bit more than she can do.  She always knows exactly what she wants to watch, but the hard part is telling me.  We scroll through lists of episodes, and use a modified kind of sign language, where she points to the right or left to tell me which way to scroll, and then to herself when she finds the show she wants.  Then, because she often watches parts of shows, we have to figure out if she wants the show back at the beginning or where she left off.  It's about 50-50, but it's also 50-50 whether she'll say what she really wants.  "From the beginning" can mean "where I left off" and if I get it wrong, it's an automatic scream.

I don't mean to sound like a complainer here, although of course that's partly what I'm doing.  But what bothers me more than anything is that I feel like Janey deserves more.  I think it's a boring life for her at times like this.  I wish she was doing the kind of things I did when I was 12 at the end of the summer---spending nights at friend's houses, going for walks in the woods, reading and reading, playing cards with my sister, even working babysitting and in my mother's store.  By the time I was 12, my world was fairly open, as open as a pre-driver's world can be in the country.  Janey's world is very closed.  She has school and home.  I do feel good we went a few places this summer, but I still feel very sad at times that her world is so closed in.

I'll close with a picture of Janey doing her favorite thing during times like this, picking out a treat at the "ice cream store".  That's the highlight of her day, I think.  It's not enough, but it's something, and it makes her happy, and sometimes that is all we can do.

Tuesday, August 23, 2016

The Wedding

On Saturday, I was part of a very special wedding.  I was the matron of honor for my dear friend Julie as she married Craig.  These was a love story that started 37 years ago, when Julie and Craig (and I) started high school.  They both right away developed huge crushes on each other, but never dated.  Life and the ups and downs and highs and lows happened, and then they reconnected and fell in love.  I am so happy for them both.

Julie, her mother and her dog--all lovely!
Being part of their wedding was something that a few years ago, I couldn't have done.  I am so glad that Janey is at a place now that I could.  Still, I was a bit worried how it all would go.  I went up to Maine last Wednesday, so Tony had Janey alone for a few days.  He came up Friday, as did the boys, and we all went to a pre-wedding party on Friday night.  Julie and Craig were married just after dawn on Saturday (the rest of the family didn't get up for that part, but I was there, and actually flew into the ceremony, held on pontoon boats in the middle of a lake, on a sea plane with Julie---the first time I've flown in 30 years, and yes, I was terrified, but it was an amazing ride and a huge surprise to everyone waiting to see how Julie was going to get to the ceremony!) Then the reception was Saturday afternoon, at a lovely converted barn in the country.  So there was a lot for Janey to be part of and a lot for Tony, especially, and the boys to help her through, as I wasn't available a lot of the time.

Janey dancing with the best man
How did it go?  It went very well!  Overall, it was fantastic.  A huge part of that was the extreme kindness of everyone toward Janey.  Maine's slogan is "The Way Life Should Be".  Being from Maine, I know that there are parts of life there, like anywhere else, that are not the way life should be, but in terms of how Janey was welcomed---it was the way I'd like life to be for her.  She wasn't just tolerated, she was welcomed and included and delighted in.  I can't even think about it without tears.  At the party Friday night, the older brother of a high school friend taught her a cheer and showed her the lobsters that were going to be cooked and tried to get her to try a steamed clam.  A friend and employee of Julie's danced with her and showed her how to waltz.  Julie's nieces all made a point to talk to her.  At the reception, I can't even say how many people danced with her, talked with her, asked me about her and just plain made us all feel so welcome.  
Janey on the dance floor--her favorite place!

I have been lucky in that rarely has Janey been treated badly by the public, but there's a difference between not being treated badly and being truly included and befriended.  It's one thing to not stare, to tolerate, and a fully other thing to seek out a child like Janey, to see what makes her happy, to go into her world.  That is what I wish there was much more of in this world---not tolerance, but true inclusion.

Freddy and Janey taking a walk at the reception
Of course, every day isn't a party or wedding.  The reception was like a perfect storm for Janey, especially in that there was dancing!  Janey didn't want to leave the dance for, literally.  She screamed and pulled back when those dancing with her tried to take short breaks!  Tony and Freddy danced with her for LONG periods!  I never knew my husband and son could cut it up quite that well.  William and Freddy took Janey for lots of walks when she wasn't dancing, so Tony could truly enjoy himself at the reception too.  I was never prouder of my boys.  So many people commented on how good they are with Janey.
A rare picture of my whole family and my parents

Now---back to reality.  It's the few weeks before school starts.  It seems from Facebook like everyone else in the world is already back to school, but Janey doesn't start until the Thursday after Labor Day, so we have some time to fill.  It wasn't a bad summer, overall.  Summer school went well, we had the great trip to Ohio and this great past weekend.  Even so, I am always ready for school to start in earnest!

I'll close with many, many good wishes and lots of love to Julie and Craig, and to everyone who was so kind to us this past weekend!



Friday, August 12, 2016

Relentless Vigilance

One of my goals in writing this blog is to give a glimpse into what life is like with a child like Janey, a child with significant special needs.  It means a great deal to me that many people read this blog that don't have children like Janey, but want to understand her and others like her.  Some people also might read just because they are for whatever reason fascinated by autism, and I can understand that.  I used to read a lot of books about kids with autism, long before I ever had Janey.  I don't so much any more, probably because I read to get away from my own life a bit, but if I hadn't had Janey, I bet I still would.  I was thinking today, though, that there are two aspects of life with Janey and others like her that are almost impossible to explain with writing.  Of course, that never stopped me from trying!

Relentless     That's a harsh sounding word, but it's true. It doesn't end, this special needs parenting gig.  It never ends.  I admire and love teachers of kids with special needs.  They amaze me.  They teach Janey in ways I never could.  And part of that is that they get to go home at night.  I am glad they do.  They couldn't keep up that level of understanding and dedication all the time.  No-one can.  And that includes parents like myself.  I do the best I can, but at the end of some long days, I don't do much teaching or guidance or anything else but survival.  I do what it takes to get through the day---lots of videos, giving in to chips and ice cream, passing up opportunities to teach, playing the same song on repeat for hours just to be able to read a few more pages---all that.  Because there's no end of the day, really.  There is no weekends, no vacations, no retirement.  The job is forever.

You might say---that's true of any parent.  But in a lot of significant ways, it isn't.  My boys went to friend's houses, were in school activities, and by the time they were Janey's age, probably often preferred to have me a bit off-duty.  I never wasn't a parent, but there comes a point with most kids that you start being less hands on.  Now that they are 21 and 18, although of course I'll always be their mother, they are adults.  My active parenting with them is in many ways over.  With Janey, it will never be.

I imagine teachers and other professionals get very frustrated that their techniques and ideas and suggestions often don't get put in place once kids get home.  It's not that we don't want to, but imagine you were teaching a child like Janey around the clock, all week long, all month long, all year long, and you were going to be for the rest of your life.  I bet you would sometimes take the easy way out, be a bit of a slacker---not in ways that hurt or endanger the child, but in ways that let you make it to the next day.

Vigilant    Imagine how it was when your child was a toddler.  Imagine that they could only talk a little, not nearly enough to really tell you about any time you were apart, not nearly enough to explain medical symptoms, not nearly enough to reassure you that all is well in their world.  Then imagine putting them in a school bus with drivers you didn't really know, or having them in a daycare program you weren't completely confident was well supervised and staffed, or, being desperate for a night out, leaving them with a babysitter you found through an agency.  Imagine they somehow, although still being a toddler, looked much, much older, almost like an adult.  Imagine the fears you would have. Imagine how you might not take advantage of desperately needed possibilities for a break.  Then imagine that stage of life never ended.

I worry about Janey every single second she isn't right in front of Tony or the boys or me.  I worry because I've read some awful statistics about how vulnerable she is to abuse.  I worry because I have seen with my own eyes that not all programs for kids like her are anywhere near adequately staffed.  I worry because I took her to the emergency room of what was recently rated one of the best hospitals in the world and because she couldn't talk, because she was difficult to examine, no-one even touched her stomach, although doing so would have likely revealed her high fever was an indication her appendix had already burst.

If you've had a toddler, you know you would move heaven and earth to protect them.  Not that you wouldn't with any child---I would probably stare down a lion if it were trying to hurt William or Freddy.  But they can tell me if something is wrong.  They can speak up for themselves.  It isn't all up to me to make sure they are safe.  I'm able to give that responsibility to them, more each year.  But I can't with Janey.  I never will be able to.  I need to be vigilant, forever.  

Relentless vigilance.  That is it in a nutshell.  That is the part of life with a child with needs like Janey that really can't be fully explained.  It is why stress levels in parents like us are said to be much like those of soldiers in combat. But Janey, you are worth it, a million times over.  I will be relentlessly vigilant for you until my last breath.


Tuesday, August 9, 2016

Unclouded day after

I was discouraged yesterday, as you might have read in the post I wrote.  Last weekend was long, with a lot of screaming and crying from Janey, more than any weekend this summer.  We had gotten used to the sunny Janey.  For so many years, a troubled day with Janey led to a troubled few weeks.  It's hard to believe, to accept, that Janey does recover much more quickly than she used to.  Even after school yesterday, she was happy.  And then there was a "toileting incident", the kind that takes a long time and many loads of laundry to take care of.   I wrote my discouraged post, and linked to it on my Facebook page.  And so many people responded.

I don't think I can ever really explain how much the support of others helps me---others living this life, or those who understand it.  I can't even imagine what it felt like to be a mother like me in the days before the internet.  I would feel, I am sure, like the only person on earth with a life like mine.  Instead, I know there are so many others who get it, who pick me up, who have helped me through some very tough times, who have rejoiced along with me at the good times.  When I woke up this morning, not sure what the day would be like, and read all your comments, read the kind words from Mary and Maura and Catherine and Fab and Kathleen and Maryann and Cynthia and Aileen and John and Rachel and Michelle and Nancy and Shanti and Antti and Grace and Julie and Sophie and Beth---wow.  For some reason I went back and read again about times during Janey's two long hospitalizations, and the overwhelming kindness shown to me by so many then, and I thought about our recent visit to meet Michelle and her wonderful family in person, and I thought about my husband and sons and extended family, and high school friends I have reconnected with on Facebook,  and people like Maryellen, who sat with me during so many days in the hospital---and I was overwhelmed.  I hope you all know how much you mean to me.

 So---today is better.  I had a wonderful morning with Janey before she got on the bus.  She was happy, calm and engaged.  We did our favorite walk, to the "ice cream store", and she picked out not chips or ice cream but a jar of salsa, and we waited for the bus listening to "I'm Gonna Wash That Man Right Out of My Hair" and we smiled and hugged each other and enjoyed the summer weather as we waited.  It felt like the unclouded day in the song Janey loves so much.


Monday, August 8, 2016

What I am tired of

I'm tired of being on edge 24 hours a day, 7 days a week.  I'm tired of never, ever being able to fully let my guard down.

I'm tired of cleaning up messes.  I'm tired of changing sheets, always having a huge pile of blankets waiting to be washed, tired of the type of pull-up disaster that still happens way too often.

I'm tired of screaming.  I'm tired of not knowing why the screaming is happening.

I'm tired of reading about possible causes of autism, which all seem designed to make me feel guilty, because it seems like every single one is something I've done or taken or not done or not taken.

I'm tired of rude people that stare.

I'm tired of worrying.  I'm tired of being scared that someone will hurt Janey when I'm not with her.  I'm tired of feeling panicked when Janey comes home from school upset, because I have no idea what might have happened to upset her.

I'm tired of the same episodes of the same TV shows, year after year after year.

I'm tired of not even counting on a full night's sleep.

I'm tired of dreading the future, especially the part of the future that will happen when I am dead and gone.

I'm tired of IEP meetings.

I'm tired of hearing about great new camps or lessons or programs or events that Janey can't be part of.

I'm tired of having to advocate.  I'm tired of having to figure out backdoor ways to get the services Janey needs.

I'm tired of feeling angry---angry at celebrities who have "cured" their kids, angry at politicians who don't even have the slightest idea what life with an autistic child is like, tired of feel-good stories about wonder dogs or magic trips to Mongolia or miracle breakthroughs.

I'm tired of being tired.  Physically tired, all the time, every single day.

Soon, very soon, I'll write about the joys of autism, or more specifically, the joy Janey brings me.  But today, I am tired.

Thursday, August 4, 2016

The Answered Question

Yesterday, I waited in the car with Janey while Tony picked up some books that were on hold at the library.  I had Tony's phone, and to keep Janey happy, I asked "What song do you want to hear?"  And she answered.  She said, right away without a pause, "Lady Madonna"

If you knew how rare that kind of answer is with Janey, you'd know how very, very happy it made me.  You might rightly ask "Then why do you ask the question, if she doesn't answer?"  Well, lots of reasons.  Even if she doesn't answer, it can often start a dialogue.  The usual result would be her repeating "What song do you want to hear?", which would lead to me making some suggestions, which then leads to her repeating back one of the songs I said.  Then, I put it on and either it makes her happy or freaks her out.  If it freaks her out, sometimes she'll then say or give a clue what song she does want, or use the feature that shows related videos or songs to pick one she likes.

Often, though, I just ask because it's very hard not to.  For a while, I decided I would try not to ask Janey questions.  It felt like something I should try, since she so rarely answered and I wondered if just being asked felt like pressure to her.  I wrote about trying do that here.  I tried for a while, and then the trying just kind of died a natural death.  I generally am not a fan of doing anything with Janey that feels artificial, forced, and that did.  So I kept asking.

The biggest reason I ask is that I hope for answers.  I want more than almost anything on earth to really know what Janey wants, what she likes and doesn't like, what delights or confuses or scares or excites her.  I want to understand her, to know who she is, so I can make her life as much one that she enjoys living as I can.  And that is why getting a direct answer from her meant so much to me.

I found "Lady Madonna" on YouTube and played it.  Janey didn't respond much.  Usually if she likes a song, she gets very excited and flops her arms around and smiles and laughs.  She didn't at this one.  I later realized that I might not have checked well in my excitement and it might have been a cover version, as there are few Beatles videos on YouTube.  Or maybe she just wanted to hear it for some reason other than that she loved it.  I certainly sometimes listen to music I don't love, to hear the lyrics or understand the style or expand my horizons.

I have a feeling, a hopeful feeling I almost hate to mention for fear of a jinx, that we are close to a new era with Janey.  I feel like she's on the edge of breaking through, of showing us more of who she is, of communicating more.  I'm not sure why I think that, besides little things like the answered question.  But I was thinking today how teenagers, for better or worse, tend to come into themselves, to know what they like and don't like, and they aren't shy about letting people know, usually.  And Janey is within a year of her teenage years.  With all the talk about how crucial the early years are for kids like Janey, I think it's sometimes lost that a lot of kids get easier as they get older.  Maybe "easier" isn't the right word.  I don't want it to be just that it's easier for me, for us.  I want her to be happier, and maybe I should say a lot of kids seem to get happier as they get older.  So far, puberty doesn't seem to be tormenting Janey much.  Overall, she is happier than at any other time in her life.  Not every single minute or hour or day, of course, but overall.  And I hope the answered questions help, and keep on coming.  They are wonderful.

Tuesday, July 26, 2016

"I need help"

It's rare Janey starts saying anything new.  Most of her phrases and words have been with her for years.  When she uses a word or phrase we haven't heard before, it's generally something she heard in a song or on a TV show, and it's not usually used in context.  But the last month or so, we are hearing her say "I need help" all the time.

I'm pretty sure she learned the "I need help" phrase at school.  We've all asked her at home if she needs help, but that would generally translate to her saying "Do you need help?", not using the first person.

It's great to hear her ask for help!  The other day, I was turned the other direction and she said it, and I said "What do you need help with?" and she said "I want my cheese!"  I turned around and she had the cheese block we always have on hand in her hands.  It was an actual conversation, something very rare with Janey, and wonderful to have.

However, as is often the case with Janey, she has started over-generalizing the phrase.  Like "please", she is using it hoping it's literally a magic thing to say.  If it's the middle of the night and we say she can't watch TV, she says "I need help!  TV on!" although she's quite capable of turning on the TV herself, and she's asking for permission, not help.  If we say no to anything, her new first answer is often "I need help!"  It's better than a scream, but a scream comes next if it doesn't work.

I've read about overgeneralizing in speech.  It's a common phase for toddlers to go through, at around age 2.  It makes sense.  Janey in most ways operates about like a 2 year old.  But lately, I am seeing signs of her slow progression to new stages.  One big thing I've been noticing is her experimenting with the world around her in ways I haven't seen before.  We got pool noodle type things to put along the edges of her bed, because we kept banging our shins on it.  She took one off, and then used it above her head to try to touch the ceiling.  We have very high ceilings, and she didn't quite succeed, but it was the kind of play I've almost never seen her do.  A few days ago, she reached over and rolled down the car window (yes, we still have old style windows in the car!)  I had no idea she even knew how to do that, or that if she did, she would be motivated enough to try it.  It's not a great thing to have her doing, as she has several times tossed things out open car windows, but it was cool to see!

I get excited about Janey's progress.  I think it can be easy to lose that excitement that we would normally feel about a child doing new things when the child in question is getting ever closer to no longer really being a child.  As the  years go on, though, I do very little comparing of Janey to "normal".  She is on a whole separate path.  Part of the not comparing is because if I did compare, I would probably fall into despair.  That's what can happen sometimes when I read news or magazine articles that talk about a child with "delays" or with "significant cognitive problems" or so on, and then read about what that child can do and think "THAT'S a delay? I don't even know WHAT they would call Janey's abilities!"  But the other part of it is learning to delight in Janey as she is, to rejoice in every "I need help" or reach for the ceiling or rolled down window.  Tony and I have said so many times this summer that if we could have seen how Janey is doing lately as compared to a few years ago, we'd be very happy, and as I knock frantically on wood, I will close with that.