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.

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.

"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.

Things I can't think about...but I do anyway

If I want to sleep at night, to ever let Janey out of my sight, to not spend my days in worry beyond worry, there are certain things I just can't think about.  And most of the time, I am able to do that.  But not always.  Sometimes, those things are in the news, or something happens that stirs up the thoughts, and wham...I am thinking.  Boy, am I thinking.

If only the brain had an off switch...

You all probably have read about the policeman in Florida who shot a caregiver of an autistic man, and explained he was actually aiming for the man with autism, and missed. (link here)  There's a lot to process there, but my mind went to the many times Janey's lost it in public.  I can picture her trying to hit or bite a caregiver, or Tony or me or her brothers, and what it might look like if a law enforcement officer came across the scene at the height of it.  I think she's a little protected just by being female, because right or wrong females seem to be seen as less of a threat, but still...my thoughts are not ones that are easy to think.

My friend Michelle and I have joked a lot that we have to live forever.  And the joke is partly a way to not face the reality that we won't, and that some day, our children will not be in our care.  Both our autistic daughters have two siblings.  For those siblings, the knowledge that they will likely someday play at least some role in Janey's or Lindsey's lives---I won't speak for them, but I am quite sure that knowledge plays a role, if even subconsciously, in their life planning.  But the alternative, a group home---well, that is something I try not to think about.  I am sure there are good, even great, group homes out there.  I know there are.  But there are others that are not as good.  This article (link here) about group homes in Massachusetts was not an easy read.

Janey's current psychiatrist told Tony and me in very clear, certain tones that Janey is at extremely high risk for abuse.  I feel like throwing up every time that thought comes into my mind.  He said girls who are non-verbal have a rate of abuse that is so high that it's almost a certainty.  Well, what do you do with knowledge like that?  I have to feel glad, here, that Janey lets people know when she doesn't like what is being done.  I want her to keep that voice.  The other day, for some reason the word "tap" came up in a conversation Janey was listening to.  Immediately, she said "tap" and tapped her head.  I know that is something taught in ABA.  I know the reasons for that kind of teaching, but I'll be honest---it was a bit troubling to see.  Do we really want our kids to respond instantly when told to do something?  

I am lucky.  I feel as close to total confidence as I can feel in Janey's schools. She is safe at home.  She is loved and cared for.  I wish I could simply close out the worries, the fears, the thoughts.  But I can't.  I don't think any of us who love a child with autism can.

Summer school and some thoughts

Janey started summer school this week.  I was nervous about summer school when I found out she would be going to a different school than she does during the regular school year.  This is because she's technically in 6th grade now, and her regular school only has an elementary school summer program (although it goes to 8th grade during the regular year).  She is attending a middle school a ways from our house.  There was an open house last Friday, and we took Janey.  After going to the open house, I no longer felt nervous at all.  We found out Janey's teacher was going to be the husband of one of the most wonderful people we've ever had work with Janey---an ABA supervisor whose known Janey for many years and is the person who actually visited her in Rhode Island when she was at the hospital there.  Any husband of hers was okay with us, and he seemed great---like someone who would understand Janey and like working with her.  We also met the ABA therapist assigned to her for the summer, and she knew Janey from way back at her original school, and seemed great.  The administrator of the program met us as we came in, and was enthusiastic and very good with Janey. It was a huge relief to meet them all.

For the first time ever, I think Janey was truly looking forward to summer school.  I don't mean just it was the first time she looked forward to summer school, but the first time she's understood enough to look forward to anything.  She woke up excited on Monday, and when I asked her "are you happy you're going to summer school today?" she smiled hugely and said "YES!" in an emphatic voice.  She wanted to go out and wait for the bus about two hours before it was due to arrive, but I held her off until about 20 minutes early.  When the bus came (on time!) she jumped on with complete confidence.  I love it that all three of my kids don't seem to suffer from the social anxiety I have.  None of them has ever had much trouble separating from me.  I thought about how I would have been at age eleven in Janey's position, going to a new school.  I would have been a wreck.  I don't think it's Janey's autism that makes her different than me in that way, at least totally.  It's her personality, and I love that about her.

In thinking about this past week, I kept thinking about WHY things seem easier now.  It's partly because they ARE, but if I take any day this week, I could find examples of very tough behavior from Janey.  There's been screaming, the loud piercing scream.  There's been arm biting, lots of it.  There's been "toileting incidents".  There's been hitting of Freddy, who seems like her go-to person when she is angry.  There's been obsessive changing of TV shows, and meltdowns when I didn't understand what she wanted.  There's been, in fact, most of the behaviors she's had all along.  But if I thought of the week in a quick summary in my mind, I'd say it's been a very good week.

I think two things make life seem easier now.  One is duration.  The behaviors happen, but they don't last all day, or usually very long at all.  They happen, intensely, and then Janey recovers.  The other thing is perspective, our perspective.  Not that I want to think we ever DIDN'T accept Janey, but now, it's a different kind of acceptance.  Janey is who she is.  It's hard to explain, but I'm starting to see that parents of autistic kids are often made to feel that their kids are somehow fixer-uppers.  They have potential.  They need to be remodeled extensively, and then, they will be livable and valuable.  More and more, that kind of thinking is bothering me a great deal.  NOBODY is a fixer-upper.  That doesn't mean we are all perfect, if you see perfect as some ideal that doesn't exist.  It doesn't mean we don't need to work on helping our children, ALL our children, learn to live in society.  But in accepting that Janey is not some project, not some house that needs to be gutted and remade, we can also accept that there's going to be screaming, there's going to be arm biting, there's going to be times that are tough.  They don't last forever, and there are also times that are great.  I'm not pretending that the challenges of autism are easy.  They aren't.  I'm not saying that Janey is not, overall, more of a challenge to parent than most kids.  She is.  She is very, very challenging, often.  But all that doesn't make her less of a complete person.

Now I will go and try to explain to Janey why Netflix no longer carries "Hercules", and try to calm her meltdown over that.  I am tired of the daily battle over that issue, but it will pass, and it's part of what makes Janey Janey, the Janey that fascinates, frustrates, confuses, intrigues and captivates me, like her brothers, like all kids.

Home from our great trip!

I had big plans to blog a little every day while on the road, but I found out I hate writing on laptops---somehow I constantly move the cursor around and then do something which deletes huge chunks of what I've written, and fun stuff like that, so I decided to wait and write when I got home!

Janey and Michelle at the Toledo Zoo!

What a wonderful trip we had!  The best part, the very best part, was meeting Michelle and her family.  I met Michelle through this blog---she was the first person ever to get in touch with me after reading the blog, back when I wasn't sure anyone at all read it!  We've been long distance friends ever since, and phone friends, but I wanted more than anything to meet her and her family in person.  So we set out for Ohio to make that happen.

We drove out at a slow pace.  Although the total trip would have been about 12 hours if we drove straight, we knew we couldn't do that with Janey.  I split the trip into thirds, and we stopped at 2 different hotels on the way out and the way back.  We stayed 3 nights near Toledo in the middle.

Janey happy at a hotel breakfast

Overall, Janey did remarkably well on the trip---better than I had even hoped.  She loves car rides, so that was a plus. She also loves "hotel houses" and swimming, so I was hopeful, but warily so.  But we found that as long as we kept Janey happy, she kept us happy. We listened to only music she liked, and switched songs on CDs right away if she wanted us to.  I love hearing local radio stations, but that was not to be!  Once we were in a hotel for the night, we set up her iPad (wi-fi was a must) and she was able to snuggle her special pillow and watch her YouTube videos just like at home.  We swam at every hotel we could (one had a pool that wasn't open---NOT a good scene!) and we stopped whenever she asked us to.  That made for long days driving, as at points she asked to stop at almost every exit---she learned quickly that saying she needed to use the potty would get us to stop---but we like seeing what's off the exits, so we didn't mind that much!

The amazing Lindsey!

I loved meeting Michelle's daughter Lindsey!  I wish every one of you could meet her.  I have to admit she opened my eyes a good deal to how much a person who is non-verbal can communicate.  I'm not talking AAC or sign language---I'm talking just by being herself.  You knew exactly what Lindsey was thinking, and she has an amazing, unique personality---larger than life!  Tony said she would have been a huge star of silent movies, and he is right.  We got to spend the most time with her the last night, when Janey fell asleep at their house.  Without Janey being unpredictable and loud, Lindsey sat at the table with us for a long time and we had a wonderful time talking, her contributing to the conversation as much as anyone.

Getting to talk to Michelle and spend time with her was a dream come true for me.  Having girls with autism is what brought us together, but I know that if we had met any other way, we would have been drawn to each other just as much.  We have so much in common, and I felt like I was with a friend I've known all my life.  And having someone to talk to about our lives, lives affected by our girls in so many ways, while at the same time being able to laugh and talk books and about our other great kids and anything at all---that was incredible.  We both had a very hard time saying goodbye.  It makes me think about how wonderful it would be to live near so many of you, to be surrounded in "real" life by the great people I've met through this blog.  But I am so lucky to live in today's world, where I can be with you all virtually.

Happy we've stopped at yet another fast food place!

Janey starts summer school on Monday.  It's a little tough coming back to reality here, but knowing we can travel, and having met my long-lost second "sister"---that was a vacation of a lifetime.

Fourth of July

 Happy 4th of July from Toledo, OH!  It's been a wonderful vacation so far.  The best part, of course, has been getting to meet my friend Michelle and her family in person.  Michelle was the first friend I made through this blog, and her support, advice and friendship over the years has meant more to me than I can say.
 
Lindsey is Michelle's 16 year old daughter, a girl who is much like Janey.  What a remarkable and cool person she is!  She is non-verbal, but that certainly doesn't mean she can't communicate!  I think she said more to me in the first 10 minutes I was with her than many people do in a year.  Her facial expressions and postures and attitude are astonishingly able to say what she wants to say.  One of the coolest things was watching her watch Janey have  a meltdown.  She said with her face "I love this!  Janey is giving them hell!  And it's not me---I'm just getting to sit back and watch!  Go, Janey!"

It's been terrific meeting Michelle's husband, too.  Fathers of our girls are the unsung heroes, and Dan is one of them.  Like Tony, he is fully there for his family, and Janey has taken to him instantly.  And Leah and Jacob, Lindsey's siblings, are amazing kids in their own right. 

And Michelle!  I think we could talk forever and never run out of things to say.  She has lived my life and I hers.  The cool thing for me is she's a little ahead of me in the journey, as Lindsey is older.  When she told me that it would get easier with Janey, I knew she really knew.  She gets the meltdowns and the isolation and the frustrations but more than anything, the love we have for our girls---the overwhelming love.

How has Janey been doing?  Pretty well, overall.  There have been meltdowns and arm biting here and there, and when she's gotten restless there have been a lot of walks and car rides, but she has spent a lot of time at Michelle's house, enjoying their hospitality, and we had a great swim this morning, lots of iPad hotel time, and a lot of doing things we do at home, in different surroundings.  It's making Tony and me feel hopeful that when he retires and we can travel even more, Janey will be up for it.

Today we are going to the Toledo Zoo.  One of our dreams for Tony's retirement is traveling around to some of the top zoos in the country, and Toledo's is one of them, so we are very excited!

 Toledo is great!  The weather has been so lovely, dry and warm but not hot.  The big Ohio skies and farms and friendliness make me proud to be an Ohio native, although Maine of course will always be the home of my heart!

I'll write more about the trip soon---I don't like writing on a laptop, so I'll keep this fairly short.  I hope everyone has a wonderful 4th!