Sunday, August 17, 2014

Janey is at camp!

I haven't written at all here until now about Janey going to camp.  I think that was because I feared a jinx, or thought I still might decide not to send her at the last moment, or something else would happen to have it all fall through.  But she is there now!

The camp is called Camp Fatima.  It's in New Hampshire.  They have a week every year called Exceptional Citizens week, and during that week, they accept campers with all types of disabilities, campers that would not be able to go to most any other camp.  Here's a website about the camp.  It is run by the Catholic Church, but you don't have to be Catholic to go (we are not).  From everything I've heard, it's an amazing, amazing place.  It's totally run by volunteers, many who come back year after year after year, and each camper has a counselor assigned just to them.  There is boating, swimming, horseback riding, archery, tennis, arts and crafts and more.  Every year the week has a theme, and this year it's "The Sound of Music", which was made for Janey!  They perform a little bit of the musical every night at dinner. The camp is totally free, payed for by donations.  I heard about the camp years ago, from teachers and therapists at Janey's old school, many of whom volunteer there.  They encouraged me very much to apply, although I was hesitant, but I finally did.

Taking Janey up today was a bit of a mixed bag!  Yesterday was her birthday, which was also a mixed bag.  She did very well in the morning, but the excitement got to her by the afternoon (it's also her brother's birthday, and although I try hard to keep it low key, she almost always has a hard time with it).  She was AWFUL in the afternoon---biting and screaming and just completely wild.  But by evening, she was happier, and she woke up in a lovely mood.  The ride to camp (about 2 hours) went well!  She was cheerful almost the whole way.  We took both boys, and that helps, as she likes being around her brothers.

When we got to camp, it was a chaotic scene at first, as a check-in like that always is!  We had to wait in a line in the car a bit, and then went to wait to hand in Janey's medication.  Janey started to lose it, completely.  She started screaming and biting herself, and actually did bite me.  At that point I was talking to a camp worker I thought was a check-in person, who was wonderfully calm about how Janey was acting, as was almost everyone!  People were clapping and yelling "Welcome to camp!" and acting like she was perfectly normal.  That was great.  I had Tony wait in the line for us, and we went over to her cabin, and showed her her bunk (the counselor sleeps right above her!) and I figured out that the woman I was talking to, Dawn, was actually Janey's counselor!  That was GREAT news, as she is a teacher in an autism classroom and has worked with autistic kids her whole career!  It's amazing to me that she takes a whole week a year to volunteer at the camp.  I told her that what she had just seen was about as bad as it gets with Janey, and it's usually a lot better than that, and indeed, Janey had already calmed down.  She liked seeing her bunk and cabin, she had some juice, and we went outside.  The picture is Janey with her cabin in the background.

I loved the questions Dawn asked---all the things that are necessary to know about Janey!  She said they pretty much have the kids do the activities they want, so if Janey likes the boats, she can spend a lot of time on the boats!  She said she will call for sure if things get out of control, but she doesn't see that happening.

We left after not that long!  It's always better with Janey to go while the going is good, and she doesn't like transitions, so we knew she'd not want us hanging around!  She happily high-fived us all goodbye and let Tony and me kiss her, and we were on our way.  We pick her up Saturday morning.

Now---almost a week to fill!  I miss her already, but I have to admit---it's going to be incredible in a lot of ways to have a week of respite.  We have NEVER had anything CLOSE to that.  We've never been away from Janey for more than one night together (once only for the one night, even!) and to have 6 nights---we aren't going to know what to do with ourselves!  On the way home, we all found ourselves getting tense when things happened that would upset Janey---bad traffic, loud noises, music stopping---it was very hard to picture that she just wasn't with us.  We stopped at a restaurant even though we weren't that hungry, just because we could!  Tony has the week off, and we plan a few day trips and maybe one night in a hotel in the city with the boys.

I am of course going to be nervous all week, waiting for a call to say that we need to come get Janey, but the truth is, it wouldn't matter where in the world she was, I would still feel that way.  I think she's in one of the best possible places she could be, and I am extremely, extremely grateful to the camp, to Dawn, and to all the people that encouraged me so much to apply!

Thursday, August 14, 2014

Sixteen non-sentimental autism truths

No trips to Holland here.  No Hallmark moments.  No miracles.  No breakthroughs.  No shiny rainbow sparkly sentiments.  Just the truth (as I see it)


1.  You can get by on very, very little sleep if you have to.  Coffee helps.

2.  Don't worry too much about what your kids eat.  I can say from experience kids can eat food off the floor, bites of paper towels, duck sauce, pickle juice like a drink and random car crumbs---all in the blink of an eye when you turn your head---and be just fine.

3.  Kids' videos are boring.  Even the better ones are boring after you see them 100 times or so.

4.  You can learn to clean up "toileting accidents", the kind that would make most people sick for days, with barely a thought after doing it for five or six years.

5.  Don't get too attached to any of your kid's clothes.  They will be chewed on, stained up and ruined very soon.

6.  The things you dread the most will often turn out to be the easiest to deal with.  The things you never thought would be a problem will very often become huge disasters.

7.  People like to stare.  They love to look at any child acting odd.  They don't try to hide it.

8.  There will be a point at some time in your life when you will feel like punching someone for talking about their child's C in math or failure to make the elite sports team.

9.  You will argue with your spouse about petty, stupid, meaningless things, and that argument will turn into a screaming match.  You'll do this because you can't argue with your autistic child, and goll dern it, you need to argue.

10.  You will have very little social life as a family.  People don't invite you back when your child screamed for hours last time you visited.

11.  You will look forward to the first day of school like 10 Christmases combined.

12.  You will have daydreams of your child asking for every toy they see at ToyrRUs, because that involves talking and having typical child wants and desires.

13.  You will at one time or another buy something overly expensive (a therapy toy, an app, a supplement, a piece of electronics equipment) because you've read about the wonders it does for autistic kids.  You will wish that money back.

14.  You will eagerly analyze anything in your child's backpack for the slightest hint of what they did all day at school.  No matter how much information your child's teacher gives you, it will not add up to a tenth of what a typical kid tells you about their day, even if the typical kid is a surly teenager.

15.  Birthdays will be tough.  People asking you what grade your child is in will be tough.  Seeing what other kids the same age as your child can do will be tough.  Heck, a lot of things will be tough.

16.  You will delight in accomplishments that most parents wouldn't even notice.  You will be in tears of happiness over words or gestures or smiles that typical parents would take for granted.  You will have moments when you realize that the child you have is perfect.  Those moments will be fleeting, but they will be so very, very sweet.

Saturday, August 9, 2014

A positive dental surgery story!

Janey had dental surgery on Thursday. You don't hear a lot of positive dental surgery stories, I don't think, but I've got one to tell!

The background---Janey has gotten dental care at school over the years, a service for kids without dental insurance, like ourselves!  Gradually, though, it became harder for her to be treated at school, because, well, she's autistic and she didn't cooperate.  When we went to Boston Medical Center's autism center, they recommended Franciscan Children's Hospital for dental care for her.  We are lucky in Boston to have a few children's hospitals.  The big one, Boston Children's Hospital, is certainly the place to go for a severe medical emergency, but it has some issues, and is not a terribly autism-friendly place.  Franciscans caters especially to children with special needs.  It's not a flashy place---it looks as I would bet a lot of hospitals looked in the 40s or 50s, but we decided to give it a try.  They saw Janey for a dental consult, and we were very happy with them for that.  It took 5 people to get Janey in a papoose hold so they could look well at her teeth, and they did it in such a kind and caring way, both to Janey and to us.  They found she had two cavities and also a broken tooth.  We have no idea how her tooth got broken, but guess that it might have been when she was having a tantrum and biting things. It was a molar and broken in the back, and we never saw it.  She never seemed in pain from it, and indeed you could press right on it and it didn't seem to bother her, but it needed to be fixed.  She also needed good x-rays, which weren't going to happen when she was awake, so they decided she needed dental surgery.

It took a few months to get all the approvals and doctor's visits and so to arrange the surgery.  We had to pre-pay for the dental part of it, which was a financial hit, but actually so far not as much of one as we had feared.  Still, a chunk of change, but it had to be done.  Our regular health insurance will cover the surgery part, minus of course our 15% co-pay (and let me say here, if anyone thinks federal employees have some great kind of health insurance, think again.  They don't)  But that aside, everything got in place and we got a date for the surgery.

Tony and I were both nervous out of our minds about the surgery.  Mainly, we were worried about not being able to feed Janey after midnight, and about how she would react to all of it.  We could picture a nightmare.  We didn't get one.

We fed Janey all we could before the midnight deadline, and kept her up as much as we could so she would sleep from midnight on without wanting food or water.  We locked up all food in the house, as she tends to get up and forage.  The first nice thing the hospital did was give us an early surgery.  We had to be there at 6:30 am for a 7:30 surgery.  Janey slept well, we woke her and drove her there, and she only ever asked for food a few times---chips, as she associates going to the doctor with chips.

As soon as we got to the hospital, we were greeted at the front desk, checked in quickly, and the front desk guy himself walked us to where the surgery waiting room was. It was a nice big open room, and Janey loved running around.  The picture is of her in the waiting room, all smiles.  We were called in quickly.  The prep for the surgery was handled SO well.  Everyone was kind and patient with Janey.  They offered us a choice as to whether to give her a sedative before the surgery, to relax her, and we decided to.  It was a drink in a cup, which Janey didn't want to drink, so Tony asked if he could give it to her by syringe, as we do with her medication.  They said sure, and she took it with ease that way.  They let us walk into the surgery room with her.  The only moment she got upset was when they put a mask on her, and as Tony and I reflected, you almost want your kid to resist being made unconscious!  She screamed out "Daddy!" and Tony comforted her, and they held the mask on her as she struggled a bit, and then she was asleep.  They waited until then to put in an IV (after we had left the room!)

The surgery took about 90 minutes.  When it was over, the dentist/surgeon came and showed us all the x-rays, and said they hadn't found any extra problems, and that her teeth overall looked very good and clean, which made us very happy.  We've tried extra hard over the years to be good with brushing her teeth, and she actually does like her teeth brushed, unlike a lot of kids with autism.  She does have what they call "delayed dentation".  She is just starting to get her 6 year molars.  I don't know if that has anything to do with her autism, or if it's just a genetic thing.  When I was in college, a dentist told me I was just starting to get my 12 year molars, so that might be just something she got from me!

Janey woke up quite well from the anesthesia.  She was sleepy, but we got her up, and there was a true minimum of crying, less than on a typical day! The nurse with us was so sweet.  Everyone there seemed focused on making sure Janey felt comfortable.  For example, when she struggled with the automatic blood pressure machine, they got out a non-automatic one, let her play with it a bit, and then used that instead to make it quicker.  The nurse walked with us to our car when Janey was ready to leave.

Janey was a bit sleepy all day after the surgery, but nothing extreme at all.  They had given her long acting pain medication during the surgery, and we gave her Tylenol a few times, and we didn't see any signs of pain at all from her.  By the next day, it was like the whole thing hadn't happened.

I tell this long story in order to give credit to the hospital, and to all the little things they did that made this work---sedation before the mash, IV after the mask, long term pain medication, calm personal nursing and doctor care, a nice waiting room, understanding of Janey's fears, quickly allowing us to make changes like the syringe when necessary---I felt the day was a great example of autism-friendly medical care.

Franciscans doesn't have a flashy look or reputation, but it shows what we've seen quite a few times with Janey.  Sometimes, it's better to go with a hospital (or a school, or a store, or a therapist) that is used to dealing with children who are in need of understanding and caring just as much as they are in need of the latest shiny equipment.

Tuesday, August 5, 2014

What does Janey think about?

Of course, we never really know what anyone else thinks about.  But with Janey, I have no inkling at all.  She never refers to past events.  She never tells me what she does when she's not with me.  She has never told me a dream.  She's never told me about a disappointment she felt.  She's never said what she hopes the future holds.  She's never even told me the little things, like what her favorite color is.  Her mind is a mystery to me.

I get glimpses of Janey's mind only by her telling me her immediate wants, and even those are limited to a very few categories---ones relating to food, videos, going outside or in the car or wanting someone to lie down with her or go away from lying down with her.  I know what foods she likes and what movies she likes.  But I don't know if she likes school.  I don't know if she likes certain kids her in class better than others.  I don't know if she wishes she could talk more, if she wishes she could read.  I have no idea.

I often look at Janey's face, trying to figure out what is inside, in her mind.  So often, her face doesn't let those secrets out.  She so often has what I think of as her reserved look.  Some people call it an autistic look, and indeed, it's a look that I think is common with a lot of autistic kids.    It's a guarded look, a look that seems to be designed to keep her safe from being asked to do things she doesn't want to do, safe from well-meant but invasive demands--- "Look at me!  Tell me with words what you want!  Tell me about school!  Answer me!"  It seems to be a way she retreats into herself, closes herself up.  Maybe autism is the ultimate way of wanting privacy---she keeps her counsel.  But oh, how I wish she would, or she could, let me know what she is thinking, even just a little.

Friday, August 1, 2014

Why just at home?

Yesterday, I got a call from Janey's school to pick her up, as she was sick to her stomach---needing repeated pull-up changes.  I can honestly say that's the first time Janey has been that particular kind of sick in her whole life.  I am not sure what's up.  She seems better today, but to not infect other kids, I'm keeping her home.

While picking her up, I got to talk a little to one of the supervisors of the summer program, who I've known for a while.  She told me something that surprised me---that Janey has not been screaming or crying almost at all at school this summer.  In fact, she said the day before Janey had screamed once, and surprised the ABA specialist that was working with her.  They told her that screaming was something Janey had certainly been known to do, but it wasn't a behavior she had been showing at school during the summer at all.

Well, that set me back a bit.  Of course, I was very glad Janey had been happy at school, but at home, almost every day, she gets off the bus and screams and cries for a LONG time---often two hours.  Nothing we can do seems to help.  I had wondered if she was hating summer school and reacting to that, but that doesn't sound like the case.  So why at home?

I have a couple ideas.  I don't think she hates being home.  Much of the weekend, and later in the evenings, after the screaming is done, she's very happy.  I think part of it is that she holds herself together at school and relaxes at home, and lets out her tension.  My sister used to do this almost every day, I remember.  She'd be perfect at school, but would come home and within minutes would get upset by something, and would fall apart.  I think it's something a lot of kids do.  Another part of it might be that she really does like school a lot.  At school, she often gets intense one-on-one attention.  She has people working with her, a busy schedule, outdoor fun---things are kept moving.  At home, as much as we try, we can't quite give her that intense attention.  The boys need rides, we need to clean and cook and sometimes sleep.  Although we are with her constantly, we aren't interacting with her in the intense way that school provides.  And although I think she likes some down time, it's a transition every day, I am sure.

I've realized something interesting lately.  How I react to Janey's crying affects how long it last almost not at all.  I can do everything in my power to stop her from crying, to keep her happy, or I can do nothing, and the crying lasts about the same amount of time.  It's like she needs a certain amount of time to scream and cry, and once that time is over, she stops, no matter what I do.  I've taken lately to saying to her when she starts "You seem very sad.  I am right here if you need anything to help you feel better.  I'll wait for you to ask me for what you need".  Then I just wait.  I stay near her, but I don't frantically try to help.  I do make sure first she's had enough to drink and eat, that she doesn't need a change, that nothing I can see is hurting her.  Then I wait.  If she asks me for something (usually, it's "snuggle on the bed!"), I do as she asks if I can, but I don't desperately try to help as I used to.  Basically, I've realized it's totally useless to do so.  Last night was a good example.  Tony was with Janey, and Freddy and I were watching the last episode of Star Trek The Next Generation, something we had been eager to do.  Janey started screaming.  My impulse was to turn off the TV and put all my attention and energy into trying to make her happy.  But Tony was with her, and I really wanted to see the show, and most of all, I knew it wouldn't help.  Janey screamed for about half an hour, and then stopped and was as happy as a clam.  And I got to spend time with Freddy.

Now for something completely different and off-topic.  If anyone is interested in seeing Janey's very cool brothers, here's a link to a music video they made together, featuring all original songs written by William, with acting by both of them and film editing by Freddy!  I have three very cool kids!   VIDEO LINK!

Monday, July 28, 2014

Autism Acceptance...Thinking It Through

I'm not much of a trend follower when it comes to autism.  I don't generally sign onto any particular philosophy or treatment plan or diet or "cure".  If I were forced to pick an approach to pledge allegiance to, however, it would most likely be autism acceptance.  The meaning of that, as I see is, is accepting a person with autism as they are, valuing them for how they act and function rather than what they might be able to become if changed.  This philosophy fits with how I raised Janey's siblings, for better or worse.  With both boys, there came a point when I realized there wasn't really a thing I could do to change their basic make-up, and that in fact I would not want to.  Realizing that logically led to doing some things differently.  For example, my second son and I used to battle daily over homework.  He would have a lot of it, but would put it off, refuse to work on it, get angry when I mentioned it---the fights were truly putting a wedge between us.  I realized I didn't want that to be our relationship.  So I let it go.  I stopped having anything to do with his homework.  I left that part of his life up to him.  And he took responsibility, but even if the result had been him not ever doing a lick of homework again, that was something I had to accept.  I wasn't willing to have his teen years consist of one big endless fight.  The same general scenario played out many times in parenting both boys, and I learned that you can't change your kids.  That doesn't mean you let them act any old way.  I am pretty old school in insisting on politeness and respect, but that is insisting on a behavior, which to me seems different than insisting on a personality trait.

So how does this tie into Janey and autism?  What can I do to show her that I accept and value her as she is?  How does this work with a child who is not usefully verbal, who cries for long spells, who can't spell out to me what she is feeling?

An incident this weekend let me to a lot of thinking about acceptance.  I was trying to work on typing with Janey.  I've heard about other girls (and boys) who seem similar to her learning how to type, and being able to tell in amazing clarity what they are thinking.   Janey has hated any attempt of mine to get her to try iPad communication programs, and I thought I'd take a new route.  We sat together and I encouraged typing on the keyboard.  Janey responded quickly---by going up to the top right of the screen and clicking on the little "x" to close the program.  She's got some good computer skills.  I opened it again and she closed it again.  We went back and forth about 6 times, and finally she started to scream.  This is very similar to the many times I tried various communication programs on the iPad with her.  It's not that she doesn't like the iPad or the computer.  She loves them both, and uses them with complete ease.  But she hates to be directed.  Left to her own devises, she'll try everything on the iPad, and explore YouTube for hours.  But if I step in and try to have her work on what I want her to, she shuts down---literally shuts down the program and figuratively shuts down mentally.

So I gave up on the typing.  I decided to tell her so, directly.  I said "You don't seem to want to type with me.  We won't do that for now.  If you want to try it again another time, we can, but it's up to you"  The look she gave me---I wish it was recorded.  It was a wonderful look---a look of relief and amazement.  And she started to sing.  She sang three verses of "Hark the Herald Angels Sing", in her angelic voice.

I realized, on reflecting, that Janey does communicate pretty well.  She doesn't communicate the way I am trying to get her to, but she was pretty plain in what she was saying.  She closed the program, over and over and over.  She cried when I kept trying to force her.  And when I told her we would stop, she sang one of her favorite songs, a song that talks about glory and peace.

What if I choose to accept Janey--fully?  What if I don't make that acceptance dependent in any way on her changing?  What if I accept the crying spells?  What if I accept her quirky interests?  What if I believe her when she tells me what she wants and doesn't want to do, even if it's not in a direct way?  What if I assume she does understand what she wants and what I want?  I will still insist on politeness and respect, as far as she is able to provide those.  She's not going to bite us, or fling things on the floor, or get her way if she wakes in the night wanting the TV on full blast.  Accepting kids doesn't mean letting them do whatever they want.  It has everything to do with respecting her while insisting she respect others.  It has to do with listening to what she has to say, no matter how she chooses to say it.  It has to do with letting her be who she is, because she is amazing, right now, right the way she is.

Friday, July 25, 2014

Puzzling Out Janey's Limited Speech

Of all the mysteries Janey presents, the most frustrating one to me is her speech.  Why is it that she doesn't talk more, and that her talking basically never advances?  Or, perhaps the more correct question---why is it that she talks at all, while other girls with autism I've heard of that seem more advanced in most ways than her DON'T talk?  Either way, why is it so hard for her to communicate?

Last night, I spent some time while not being able to sleep thinking about the possible reasons for Janey's limited speech, and eliminating them one by one in my mind, trying to get to the core of it.  Here are the reasons I ruled out, and why...

Inability to produce words verbally

That one is easy to rule out, because Janey can say anything verbally.  I know this because she DOES talk constantly, using delayed echolalia.  Janey can recite the full script of movies and TV shows she's seen years ago.  She can say several Three Stooges skits line for line.  She remembers lots of poems she's heard at school, to say nothing of the thousands of songs she can sing.  She has no problem producing speech sounds, with the exception of "th", which she has a bit of trouble with, but she says it anyway, cutely.

Lack of vocabulary

It would certainly be possible that Janey could have a lack of vocabulary, because the words she says via echolalia could be meaningless to her---just recited words.  But that doesn't seem to be the case.  The most vivid way this is shown is when she's in a very rare cooperative mood and she will allow herself to be quizzed on single words, with iPad programs that show pictures so she can name the words.  She knows amazing amounts of words---mostly nouns, but some verbs and adjectives.  She can name obscure things like "pelican", "castle", "earmuffs", "peacock" and more.  We have watched her do this in amazement several times.  She KNOWS the words.

Lack of understanding of spoken language

This would be more of a contender until recently.  But Janey has shown more and more how good her receptive language is.  The best way she shows this is by following complicated instructions.  She often will come to me with something she wants to eat, like a jar of salsa (which she eats on its own).  I will say something as complex as "You can have that after you close the refrigerator and get me a bowl and spoon, and take off your top so we can put on an old one that can get dirty", and she will do all I say to get the salsa.  I can ask her to get ready for school, and she'll find her shoes and backpack and walk to the door to head out to the bus.  She knows what we are saying.

Lack of desire to communicate

I don't think this is it.  Janey asks us for things all day long, and often she is frustrated that we don't get what she means.  For example, her most used phrase for about a year now is "Snuggle on the bed"  However, this can mean about 10 things, including "I want to snuggle with you", "I want you to get up from the bed (or couch) where you are so I can be there instead of you", "I am tired and want my pajamas on so I can go to bed" or "Stop doing whatever you are doing and pay attention to me", among others.  She very much wants us to know what she is trying to say, but she doesn't seem able to narrow it down, even with us modeling a phrase once we do figure out what she means that particular time.

So----Why?  Why is Janey's speech about the same as it was at age three, when she first regressed, and worse than it was at age 2, before she did?  Why, despite years of speech therapy three times a week, has she made no progress that lasts?  I don't know.

Many people have suggested augmented communication for Janey, like a speech program on the iPad.  I downloaded the trial version of several such programs a few months ago, and have been trying hard to get Janey interested.  She isn't, not one tiny bit.  In fact, she now gets angry when she sees me showing them to her or even using them around her.  She immediately grabs the iPad and switches to something else.  Maybe I don't know how to teach them correctly, but she seems extremely bothered by the computer voice, although I've tried changing it.  Janey is HUGELY sensitive to noise and sounds.  She is an auditory learner, unlike many kids with autism who are visual learners.  I think this makes AC doubly tough for her.  She isn't interested in visual symbols, and she doesn't like to hear voices that don't sound like she thinks they should, just like she is driven crazy by off-tune music.  So it seems like we are stuck with trying to get her to talk to conventional way.

I wish very much I could figure out how to help Janey with talking.  However, I am starting to feel it's not going to happen.  I'm not a speech therapist, but the very good speech therapists she's seen don't seem to have a handle on how to help her either.  Maybe I need to just be grateful to be able to have her talk at all, and the truth is, I am, very much so.  I know it's not a given, and I'm very lucky she does talk, even in a limited way, and that she does understand.  I'd stop striving for more if she were happier.  But when she screams and screams, I can't help but feel that she would be happier if she could tell us more easily what she is thinking.  And so I will keep trying to figure it out.