Tuesday, November 17, 2015

Communication - A Basic Human Need

I was venting to a friend today about the lack of understanding I sometimes see people have toward my gal.  My friend has two children with special needs, one of whom is sort of like my RJC in terms of communication struggles.  She completely understood where I was coming from and shared the following:

Her guy, who struggles with language, was trying to communicate that he wanted to go home on a specific day.  That was not going to be possible, but instead of letting him know this, the person who he was communicating with simply repeated what he was saying.  This gave him the impression that he was indeed getting confirmation that he was going home on that specific day.  When that day came and he didn't go home it is no surprise that he had a tantrum - and nobody could understand what triggered such behavior.  This ended in a physical restraint which did not need to happen if only the person he was communicating with took some time to figure out what he was saying instead of taking the easier way out by just repeating his words and assuming he was not trying to communicate an actual thought.

My gal, my friend's children, the others in the world who may not be able to communicate in the traditional way, are NOT empty vessels.  Somehow this message needs to get out there to those who work with our kids, those who are in contact with our kids, those who are anywhere near our kids.

Communication is a basic human need.

I know that when RJC is going through the trouble to attempt communication, then she has something to get across.  It is neither fair, nor kind, to assume that because her language skills are lacking, she is not intelligent enough to have something to communicate.  She is.  In fact, I think RJC is incredibly smart and my heart breaks that she is stuck with a brain that does not allow her to show us her intelligence in the traditional way.  But that's another issue.  Sigh.

Though RJC does not use sign language or a communication device of any sort, her language can be funky.  She doesn't always use full sentences, she uses a ton of scripts from various children's shows, her grammar and syntax is usually not correct, and some words she uses are not pronounced correctly.  She also has little understanding of anything that is abstract, so I will readily admit that she can be tricky to communicate with - both talking to her and understanding her. 

With RJC, listening is not always about listening to words.  It's listening to tone, listening to volume, looking at facial expression and body language, considering the context if it's possible.  If she says something that is not understood then ASK!  Simple questions such as, "Can you show me?" or "Can you point?" may shed light on the issue and immediately any tension can be de-escalated.  It's also like putting money in a bank - the more somebody understands her and shows a willingness to work to communicate, the more likely she is to communicate in a calm manner and seek out the person she knows is willing to try to understand her. 

With RJC communication is not only about using words.  It's about using gestures (often over exaggerated), pictures, comfortable and non-threatening body language (give the gal space, for example), written words, "first-then" statements (because she understands them).  Do not assume that because she isn't getting the message the first time that if just needs to be stated louder or repeated in the same way.  Use different words or a different mode of communication.  This may be a surprise, but often if one sings the words to her (pick a tune, any tune) she can better understand what is being said.  In fact, she may often sing her words when she is trying to communicate.  Over the years she has come up with her own little tune to use when she does this.

Somehow the message needs to be clear to the world that people who do not communicate in the "regular" way STILL communicate!  They are not empty heads walking around aimlessly with no desires, no opinions, no specific likes or dislikes.  They are people.  They have needs.  They have wants.  They have hearts that can be broken and feelings that can be hurt.   We may not actually ever know what they hear, what they understand, or what they feel on a deep level.  But that does not mean we are not obligated to try.  And if we do try, maybe we will know. 

Actually this seems like a basic human right. 

Certainly a basic human need.

Friday, July 3, 2015

RJC and The Aquarium

RJC loves the Aquarium. 

Early on in her diagnosis, we decided we would be a "normal" family and do what other families do.  Well, we didn't really decide.  We just assumed. When she was officially diagnosed, our other daughter was 6 months old.  We were feeling fairly overwhelmed and we were also completely and totally clueless as to what to expect or what was to come.  In some ways our naivete was a good thing.  It never really occurred to us not to do things that we would have done without her diagnosis.  We did learn quickly that our "normal" would not be the same as others we saw, but we also thought we could just make a few adjustments and we'd be on our way.  For example, we wanted to be able to go to a restaurant but RJC was a bolter (and in her younger days she was incredibly quick), a screamer, a thrower, a...well, you get the picture.  Now imagine going to a restaurant with her along with an infant.  So we started going at "off" times.  Dinner at 3, for example.  It was slow going and we have some incredibly memorable restaurant stories (if you see me, ask me about the raccoon or the cane story) but we did it.  Because we did it, we can now go to dinner at a regular dinner time, she is able to wait for a table, and she can order for herself (kind of - we usually have to translate a bit).

Why do I share this?  Today, we had the best trip to the Aquarium ever.  I mean, ever.  We have been going there for years and I'm so glad that this was one of those experiences we assumed we could do.  I am fairly certain we started these trips when RJC was five and NMC was two.  NMC was in a stroller and RJC was in a harness (we used that thing for years and endured quite a few odd looks and even a few nasty comments, but it was much better than not going anyplace or having her face on a milk bottle as a missing child.  But I digress).

When we started these visits, we would drive an hour and fifteen minutes each way to be at the Aquarium for barely an hour.  We'd then go to a restaurant and order her favorites in her special way (soup with 6 packages of crackers, for example).  She pretty much ran through the outdoor part of the Aquarium, barely stopping to focus on anything.  When she did stop, we would need to pick her up to see and she'd always want to lean much too dangerously over the rails.  Of course, we wouldn't let her and then the screaming would start.  As for the actual Aquarium - the indoor part where the fish were - we pretty much ran through it.  Less than a minute, if even that.

As the years went by, we were able to get her to stay with us a little easier (lots of training with Applied Behavior Analysis, thank you very much).  She would have her favorite spots to visit.  She loved the Sea Lion show.  She liked to visit the penguins, and slowly over the years she developed a tolerance for the inside of the Aquarium.  She'd walk pretty quickly through but there were some places we could count on her to stop.  She was intrigued by the jelly fish, enjoyed watching the sting rays and turtles.  Interestingly, as her language emerged she was more interested in our visits.  I assume it is because they were now making more sense to her as she knew what things were and could share them with us.  We would then go to that same restaurant over the years and she had her favorite waiter, Adam.  Pretty sure she was his favorite customer too!  He would always squat down, call her by name, and talk directly to her.  He had a gift.  Adam knew her order well enough so that we could let her order by herself and we knew he would get her exactly what she meant to order.

So this brings us to today.  RJC, her dad, and I, arrived at the Aquarium and needed to renew our membership.  RJC waited patiently next to us.  We went inside and immediately went to the Sea Lion show which was packed.  Not a problem.  We found seats and she sat happily, scripting quietly and asking me some questions about her upcoming schedule (pretty standard "conversation" for us).  Sat through the entire show applauding at the appropriate places and sometimes squealing things like "good job!" and "look at that!"  Again, at the appropriate times.  Next stop was the 4-D movie.  She held her glasses until we were inside, just like I told her.  She waited 20 minutes quite nicely until we were let into the theater.  I was personally amused by her animation during the movie but I'm not sure some of the other adults appreciated it.  Nevertheless, she was hooting and hollering at all the appropriate moments - perhaps a little too loud, especially for somebody her age - but she was having fun and wasn't hurting anyone so it was all good in my mind.  She especially liked the "snow" that was falling.  We then did the outside tour of the Aquarium and I was amazed at how much time she took.  There is an area where there is a large pond on both sides of a low bridge and she was looking for frogs.  She pointed them out to us (trust me, this is a BIG deal) and we were able to point some out to her.  She even tried to follow our fingers to see where we were pointing.  She wanted to go see the penguins next.  This exhibit has penguins outside then you can go downstairs and inside to see them swimming underwater.  She said something like "Cooler down to see penguins please" and we went inside where she and her dad stood by the window for at least 15 minutes watching them swim around.  We left there and went inside the Aquarium where she walked from one exhibit to another pointing out the fish and mentioning their color or their name.  She was incredibly animated and went from each exhibit to the next, completely focused on what she was seeing.  She would not be rushed.  She had a game plan and was sticking to it.  Last stop was the gift shop.  In the car ride there, she announced that she wanted to buy a cap which had both my husband and me perplexed.  She never wore anything on her head.  Still, she made a straight dash to the hats, chose a red one, then got her snack and was happy to stand in line for about 10 minutes.  We left the Aquarium with her wearing her new hat!

Next stop, off to the restaurant.  We walked inside and noticed it had a different set up.  No table service anymore.  Then we noticed - it was not longer the same restaurant.  Yikes.  Adam was gone.  Double Yikes.  Long story short, the Manager had worked at the previous restaurant and was able to get us through some tricky logistics and she was perfectly well behaved. 

On the way home, she was quite tired.  By the time we arrived at home,  we had been gone for six hours.  Six.  Hours.  And they were six wonderful hours that she was happy and engaged.  I've told my husband many times that if our family could live on an isolated island I would be happier.  Not sure that is the actual case anymore.  Over the years, we have found our niche.  We have our routines, we have our places, we have our lives that are enriched by all sorts of surprising experiences.  If I were to be totally honest, I'd say that even the less positive experiences are still enriching as we all grow from them.  I could do without them, mind you, but I will take what I have.  And I think my dream of an isolated island may be a dream of the past.  Because really.  It's not what I think we need to do anymore.  We can figure this out.  We'll just follow RJC's lead. 

And who knows what the next visit to the Aquarium will bring!

Wednesday, June 10, 2015

Twenty-three Years Old. Wow.

It's the evening before RJC's 23rd birthday.  Every year in the week leading up to her birthday, I tend to think about all the things she would do if she did not have an autism diagnosis.  She would be driving a car, going to college, holding a job, dating a wonderful boy, applying to medical school.  Yep.  I go there.  Every. Year. 

This year I really did not give her birthday much thought until today.  And even today it was more like, "Oh. She'll be 23 tomorrow." Then I'd be back to paying attention to whatever I was doing.  No harping.  No feeling sad.  No wishing we could avoid a celebration.  No driving my husband crazy (well, about her birthday, anyway).  It was just a regular kind of day.

Why?  I thought I had a few theories but none of them were sitting right with me.  Then I realized it just doesn't matter.  The key is, this year I'm ok with her birthday.  So this is what we will do for her 23rd birthday.  We always celebrate birthdays with another family and we'll be doing that tomorrow, just as she expects.  We will be at a fun pizza spot.  She wants a cake so we will do that too.  She doesn't particularly care about presents so that's never a big part of her day though Grandma and Grandpa send some cash which she always thinks is very cool.  Not sure why she likes the cash, but she does, so they lovingly send it.  This year I set up a little party for her with her peers at her Day Program.  The staff is willing and pleased to carry out some little celebration for her and as she spends six hours per day there it seemed like it'd be fun.  At some point we will probably practice having her answer the question "How old are you?"  She has no understanding of the significance of a birthday so we'll teach her a rote answer.  That's the birthday girl's way of spending her 23rd birthday. 

I hope that tomorrow I am still able to keep perspective and enjoy her day on her level.  I'm going to do everything I can to remember that her birthday is the day that I gave birth to an incredible, amusing, smart, and unique gal.  My life would not be the same without her and I wouldn't want my RJC to be anybody but who she is.  Which is what I want for my 20 year old child as well.  Isn't that what we all want for our children?  To be true to who they are?  I don't know what the future hold but tomorrow I'm just going to try so hard not to worry about it.

Happy 23rd love bug!


Thursday, May 7, 2015

An "Aw" Moment

RJC has her sleep routine at night and her wake up routine in the morning. 

At night, she showers, plays on her iPad, I brush her teeth, she gets a drink from the kitchen and we go to her room.  Together we say the first line of the Shema prayer in Hebrew (translates to:  Hear, O Israel, the L-rd is our G-d, the L-rd is One).  Then:
RJC:  Goodnight mommy.
Me:  Goodnight RJC.
RJC: Goodnight mommy.
Me:  Goodnight RJC.
RJC:  Thank you for the two times for mommy.
Me:  You're welcome RJC.

Monday through Friday, in the morning, she will generally come in to bed with me once my husband is awake and moving.   She will either hold my arm like it's a stuffed animal, take hold of my hand, or if I'm on my side facing away from her she will pat my back.  It feels like she is making sure I'm really there.

Yesterday she had a very busy day and between her sleeping pill and the outdoor activity she must have been very tired.  After she had her drink she went to her room but didn't wait for me.  I went in just a few minutes later and she was asleep.  This morning, she came into bed with me, took my hand and said, "Say Shema with mommy?"  Oh my gosh, it was the sweetest thing ever.  We said Shema together, she was satisfied, and fell back to sleep.

There are lots of worries that come with having a child that will not be growing into an independent adult.  I've mentioned them before - feel free to go back and read some old blogs.  Today, though, it's about the beauty.  The simple request to say a prayer with mom - whether or not she knows it's a prayer is not the point - it's that she feels something when she says it.  And she wants to say it with mom.  And when she doesn't, she misses it. 

It was an "aw" moment. 

Wednesday, January 21, 2015

Autism and A Trip to the Hospital

It was unexpected.  RJC needed to go to the hospital, and now that she is over 21, I was not sure that the Children's Hospital would accept her.  I could not take the chance that they would turn her away (that would be tantrum material for sure) so we went to the hospital that I knew would treat her. 

My concerns:  First, would they be so crowded that we would be sitting in a waiting room for hours.  Second, would they have anybody there who would understand her autism issues which were bound to crop up.  Third, would they insist on doing things "their" way rather than working with us to make it as much of a comfortable and positive experience for our girl as it could be.  Truth be known, we have had quite a few experiences in the past that made me feel wary of what we were about to face.

Let me start with the end - it was a surprisingly good experience. 

When we first entered the hospital we were told to have a seat and wait for our turn to do an intake.  As RJC and I were there alone at that time (hubby was on the way) I decided to ask the security guard if there were any doctors there that he knew would be comfortable with special needs.  He was very reassuring and explained that there were plenty and I needed to mention this in the intake.  Hubby showed up and we were quickly called over, gave the intake person information, and were sent to sit in another area.  While we were there, the security guard came over and said he went and did some checking around because he could see that I was worried and that there were definitely doctors there who would be able to help her.  I was rather amazed that he would go through the trouble to do that and I totally appreciated it.

Our next call was to give somebody more information.  RJC asked to use her stethoscope which she handed over readily.  She talked with RJC while asking us the ever important insurance questions.  She tried to get information from RJC directly about how she was feeling and when we told her she was not a reliable reporter, she nodded and listened to our answers but still kept RJC in the conversation.  We were then sent to wait.  Again.

RJC got comfortable on a couch, leaning on me and scripting quietly.  Finally we got the call to a room.  A nurse came in and took her blood pressure, then let us know the doctor would be in.  It was a few minutes, then the doctor came in.  He looked incredibly young to me (but don't most people these days...) and he introduced himself with his first name.  RJC put out her hand to shake his, and a connection was made.  He asked her questions and understood quickly when we told him she was not a reliable reporter.  She asked him for his stethoscope and he helped her put it in her ears and let her listen to his heartbeat.  He didn't even blink.  As her symptoms did not easily point to just one obvious diagnosis, he thought a blood test would be helpful.  I was dreading this possibility.  We explained that a blood test could only be done under general anesthesia and what he did NOT do was just as important as what he did do.  He did not get haughty, judgmental, or preachy.  Instead, he said he would discuss this with another doctor and figure out what they could to do.  I was completely shocked and more than relieved.

Waited again.  RJC was getting somewhat agitated at this point and we were singing and making ridiculous sounds to keep her amused.  A second doctor came in.  She also did an exam of RJC, letting her use her stethoscope (do you see a pattern here?) then explained to us that taking into account her needs, they were willing to do what they needed to in order to get a blood sample but that they could also take a less invasive route and do some observation, as she was a young patient and there was not necessarily an imminent reason for doing a more invasive procedure.   She gave her a medication, then sent us home with pages of instructions of what to watch for and when to call.  We were comfortable with that (as comfortable as parents can be in that situation) since all the symptoms were gone and she was pretty much "back to her normal" self.

As to my concerns:  first, though there was quite a bit of waiting and though we were in the hospital for hours, she did very well.  It was probably helpful that we were moved from place to place.  Even though we were moved just to wait around some more, we were moving and that was helpful.  It got a little dicey by the end but we made it.  Second, everyone we came into contact with was very respectful and comfortable.  Nobody ignored her and everybody included her in their communication.  Third, they did not insist on "their" way.  They gave it some thought and came to a conclusion that they thought would work for her.  They reassured us that if we wanted to do something else they were more than willing.  It was an honest to goodness team decision. 

I can't help but to wonder what made the difference between this experience and some past ones we've had that were not very positive.  Is it that there are more people with autism, so professionals are more aware and have more experience?  Is it that the younger doctors have grown up in an environment of inclusion/Best Buddys/Unified Sports, etc. so people with special needs are familiar to them from a younger age?  Whatever it is, it is good.  It is really, really good.

But just in case...I was ready to put up a stink if necessary.  Just sayin'.

Saturday, December 13, 2014

The Mall vs. Autism During the Holiday Season

Even two years ago, I would never have considered taking RJC to the mall less than two weeks before Christmas.  It is one of her favorite ways to spend time, but the crowd, the noise, the lines...no way would I chance it.  This year I decided to give it a whirl so we went to her favorite mall.  She had the names of the places she wanted to go in proper order, and she knew exactly what she wanted at each place. 

First stop - department store.  We walked around forever and a day looking for the section that had pajamas.  Finally I said, "Let's ask that lady."  RJC walked right over to her and said, "Pajamas for winter with sleeves please."  The lady hesitated, glanced at me, but I decided to give her a second before intervening.  The light bulb went off and the lady smiled and said, "OH!  Winter pajamas are over there" and pointed.  "Thank you!"  my gal replied, and off we went.  Not only did we find the winter pajamas, but we found ones that she wanted and that fit.  Store 1 - success!

Second stop - Disney Store.  This store used to have the visitor's guides that come out of every year but they no longer sell them in the stores.  Nevertheless, RJC insists on stopping there and looking for it.  Sometimes it works out ok when it's not there.  Other times...well...she gets a little loud.  The store was packed but she negotiated her way around nicely.  No book.  She stopped, sighed, and said, "Time for nails."  And off we went.  No screaming.  Store 2 - success!

Third stop - Nail salon.  The ladies at this salon know our family well and are always accommodating.  We have gotten past the language barrier on both sides and they all truly enjoy RJC who always has very clear instructions on how she wants her nails.  I sat next to her and watched as she and the woman negotiated.  "Red, green, red, green, red.  And white snowflake."  The woman wasn't sure which to start with - red or green - so she takes the two colors and holds them up.  "Red first?  Green first?"  RJC chooses the red and they are off and running without any intervention from me.  She finishes the nails and RJC reminds her about the snowflake.  "Which finger?"  RJC is a little perplexed and says, "Snowflake on red."  She has six red nails so I intervene.  "Snowflake on thumb?  Big finger?  Pinky?"  "Snowflake on thumbs!" she says with relish.  They both smile and once again, they are off and running.  RJC is thrilled with the result but the woman is not yet through.  She holds up some silver glittery polish and says, "Yes?  On the snowflake?"  RJC nods and the woman puts the finishing touch on.  They are both smiling and before we leave the woman tells me "She cute."  I must agree.  Store 3 - success!

Fourth stop - Mrs. Fields Cookies.  There is a young guy behind the counter who has helped RJC in the past.  My girl is very picky about her cookies and though there is a full tray of chocolate chip cookie cups with M&Ms, they are not all equal in her eyes.  She knows exactly which one she wants.  It is difficult to point to a specific one in the case so the guy begins pointing to each one.  He points and she replies, "no". so he points again.  Again, "no."  This goes on until he finally gets to just the right cookie cup and he is met with a resounding "YES!"  He smiles and as he rings us up he tells me, "It's so great that she totally knows her mind."  I think to myself that it's so great that he thinks this is a great trait because she just held up his line and he didn't care a bit.  Store 4 - success!

Last stop - Au Bon Pain for lunch.  Now this is going to be tricky because this place is packed and she orders unusual combinations of foods.  There is a long line but I notice people who have helped us on past visits so I'm hoping for one of them.  We do get a young woman who has helped her before and completely understands what it means when she says, "Chicken Caesar salad with nooo lettuce."  She doesn't even blink.  Now I also need to bring home a cup of soup but they are refilling the soup that we need.  Leaving RJC at the table to come back for the soup isn't an option, but the thought of negotiating the crowd with her once again isn't on my fun list.  I ask the cashier if I can pay ahead and then if she would let me know when the soup is refilled.  I figured we'd head there on our way out.  About ten minutes later, the cashier catches my eye, tells me the soup is ready then offers to get it for me.  She gets the soup, a roll, puts a cover on it and puts in a bag.  She is my angel.  I ask her name.  "Christian."  "Oh my gosh, quite the perfect name for this time of year" I say.  She tells me she was born on Christmas.  Too perfect.  And at our final stop - success!

As I am driving home, I think of how years of practice and exposure has allowed us to navigate this potentially difficult situation.  She has come amazingly far in her ability and willingness to communicate.  By interacting with many of the same people over the years, there is a comfort level on the other side of the conversation that is most often not there the first time somebody meets RJC.  That comfort level allows her a modicum of independence.  I also think about how I am not a fan of autism, per se, but how lucky I am that because of autism I often see the best of people.  My child allows people to show the best side of themselves with their patience, their understanding, their compassion...and never their condescension.  While it is true, we have also seen the very worst side of people, today it was all positive.  Today at the mall, every interaction was a positive one. 

In the battle of Mall vs. Autism during this holiday season, neither one of them won.  They played on the same team so we all won.  Wishing you all smooth sailing at your next trip to the mall - holiday season or not :) !

Tuesday, November 18, 2014

Communication Challenges. It's What We Live.

I have been noticing how complicated communication is for RJC.  Not like I haven't know this for years upon years, but now that she is making so many efforts to be social and to communicate, I can see how incredibly difficult this is and I feel for her.  Communication is complicated in general, but when one adds autism into the mix it is overwhelmingly complicated.  All day every day, we find ourselves in social situations.  We need to make ourselves understood and understand others. Imagine knowing what you want to say but not being able to make yourself understood.  Or hearing words come out of other people but not understanding what they are saying to you.  The frustration, the confusion, the helplessness. 

We work very hard in making RJC as independent as possible.  Yet communication is a large part of being able to be independent, and this is one area where she is sorely lacking.  Take the case of restaurants for example.  For her to order her food herself we need to directly teach her what words to use.  We basically give her a script to memorize.  There are problems with this method.  We cannot possibly know every question that will come her way.  We cannot count on every wait person to have the patience to listen and attempt to understand her language,  We cannot possibly know how each restaurant prepares a specific food, therefore ordering the same food in different restaurants has different results.  For example, a Chicken Caesar Wrap, can result in getting tomatoes which she does not like, or not getting croutons, which she does like. 

The other night when we were out, RJC ordered dinner and the waiter had less than no clue what she said.  Granted, her syntax was incorrect, but surely the sentence "cheddar cheese soup and six packs of crackers in a bowl" isn't difficult to figure out.  Neither is "cold water with ice cubes."  So what the was problem?  Did he stop listening because the sentence was oddly worded?  Did she make him nervous because she was obviously not a "typical" twenty-two year old?  Am I so used to her wording that I don't understand why others don't understand?  Was he turned off by the fact that she was telling him what she wanted in a very scripted tone of voice?  Whatever it was, she finished telling him what she wanted and I needed to repeat what she said (well, maybe "translate" is a better word to use than "repeat").  I imagine that is frustrating for her.

Even when she is able to communicate her general needs to the world, the world communicates back to her in complicated ways.  While she is capable of ordering what she wants, there are often questions that come out of the blue that make no sense to her.  For example, she may be asked questions like, "Do you want to make a donation to ___", Do you want that made with whole milk, skim milk or 2%?"  "Do you have our rewards card?"  People generally speak quickly and there is a good chance that while they were asking her a question she was talking about her purple friend, "Barney."  After all, she put in her order.  She was done.  There is no concept that this is a two-way communication.  Even if she was aware, she couldn't answer the questions that come at her because we cannot necessarily know the options that she would be asked, in order to teach her the correct response. 

And this is just a restaurant!  Add in the rest of her day and all of the communication that has to take place in order to be a part of the social scene and it's overwhelming.  Is it really any wonder that meltdowns occur?  Or that she escapes into the familiar scripts from Barney, Sesame Street or Wee Sing?  Or that when we go to the mall she wants to go into the same stores in the same order? 

It's amazing that she is as happy as she is.  That she continues to work at socializing at all.  That she navigates through a confusing world as well as she does.  

We will continue to do our best to give her tools to communicate.  Going back to the same places is helpful - she gets to know the menus, the staff get to know her, understand her, and come to a comfort level communicating with her.  On top of that, we truly do not know what she is capable of or what she really understands so it is important that we continue to work on the proper use of pronouns, getting her to listen to others and try to answer questions.  We also never know when she will meet up with some wonderful person who will work to understand her so that she can be independent in her interaction.  We love those situations.

Communication challenges.  It's what we live.