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.

Friday, July 22, 2016

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.

Friday, July 15, 2016

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.

Friday, July 8, 2016

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.


Monday, July 4, 2016

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!

Friday, July 1, 2016

Lessons Learned on day two!

1.  However much time you have allowed for a day's driving, double it.  I tried to make each day on the road about four hours, but with Janey, we find ourselves stopping constantly.  I really don't mind that, overall.  It's kind of interesting to see what's off all the exits, but if you are travelling with a companion like Janey, don't count on making good time.

2.  Route 80 through Pennsylvania is pretty but just a touch boring.  It's very rural, and there is not a lot to see from the highway, at least not much that interested Janey.  So she thought of reasons we needed to get off the highway---"I want potty", "want fries", "want to take a walk?"  It was all worth it to have a mostly happy traveller along.

3.  Don't count on listening to anything but the song that keeps your little traveller happy.  For Janey today, it was "Breaking Up is Hard to Do", sung by David Cassidy.  A song I like, but not so much 20 times in a row.

4.  Six am is a good time to use the hotel pool and hottub.  Nobody else is there, and you can have as much splashing and flapping and general loud happiness as you want. 

5.  You can only eat so much fast food.  After a while, you need to find a real grocery store, and they are a lot harder to find in towns you don't know than fast food is.  We finally found an Aldi's, which I'd never been to before.  The food was good and very cheap, but I almost caused a scene by not knowing I couldn't actually use the cart that was by the cashier to take things to the car---that was just a place to set down our groceries after she scanned them.

6.  I love how Janey gets excited about things, in contrast to a lot of the girls her age I saw at breakfast this morning who looked like they would rather die than crack a smile. 

7.  It's not completely easy taking a child with autism on the road, but I'm glad we are doing it.  Tomorrow, on to Toledo and the exciting moment of meeting my friend Michelle in person!

Thursday, June 30, 2016

First day on the road

I'm going to try to write a little every day about our week long trip with Janey, to remember it and to share how it goes and anything I might discover about traveling with autism along for the ride!

This is the first trip we've attempted with Janey since she was 3, when she was diagnosed with autism.  Her diagnosis actually came soon after our last long trip, a 3 week cross-country one.  In some part of my mind, the part that likes to blame myself for things, I wonder if the trip had some part in her rapid decline at that point.  I don't think so, but for that reason and much more just because even short trips with Janey were tough for years, we haven't travelled more than a night or two since, and not much of even that.

For this trip, we will be gone 7 nights, in 5 different hotels.  There will be quite a lot of driving, as we go from Boston to the Toledo, OH area. 

We got on the road today about 9, and arrived here in Scranton, PA about 5.  What would be normally a bit over a 4 hour drive took us 8, but that was okay, as it was necessary to keep Janey happy, which, for the most part, she was.  Most of our stops were to deal with something that was upsetting her that swe couldn't do while driving.  She has her special pillow with her, and sometimes, it had to be next to her, while other times, it had to be out of sight in the luggage area.  I don't know why, I think only Janey's OCD knows why, but we stopped to fix that a couple times, as well as put in and take out her ponytail.  A few times, she screamed "WANT THAT SONG!" but wasn't able to say what song it was.  Luckily, I suggested a few songs and either got it right or made her think of another one that would work.

The most upset she got was in the hotel room, with her iPad.  She wanted to watch YouTube Kids, but I hadn't set the wi-fi yet.  She came close to biting me, but I evaded it and got the iPad going.  I think by that point she was just burnt out, and wanted to do something that felt like home, and once she did, she was calm.

We promised her swimming at the hotel, but she has fallen asleep before we could go, so we'll do that in the morning.  I hope she sleeps well.

Tony and I have talked about how this trip goes will be something we are paying close attention to, as what we hope to do when he retires is a lot more trips like this, to see the country.  We are low-key travellers, often happy with looking at car scenery, eating fast food and swimming in hotel pools, and if we can do that more in 5 years or so, we'll be happy.  If not, we'll make another plan, as Janey's happiness is a necessary part of our happiness.  We are encouraged by the many big smiles we saw today, on what was mostly a good start to the week.  Tune in tomorrow!