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 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.

Monday, September 22, 2014

What a Difference Six Months Makes.

Some changes took place in the last six months and what a difference six months makes!

The first adult program that RJC was in did not work out.  They said there were constant behavioral issues with her.  They wrote reports - none of which I actually saw - but they made sure to let me know they were writing them.  For my part, I was frustrated that she spent her day playing Wii games.  She did not go out in the community on a regular basis due to said behavioral issues.  One thing led to the other and we made the decision to move her to a different program.

Fast forward six months.  She has been in a new program that focuses on daily living skills.  Though her start was a bit rocky, she settled in.  She has been going out on a daily basis, and she has generalized skills she practices there.  When we leave the dishwasher open she takes that as her cue to empty it and she does - no verbal prompting necessary.  Same with folding towels - leave them out and she independently folds them. 

The staff at her new program "get" her, like her, and she is very aware and sensitive to this.  During the rocky period our Behavior Analyst and I met with the staff and we developed strategies to help her during her difficult times.  They not only accepted the input but put it into action.  It was a team approach which I was used to from her school days.  Once she was in a more positive and supportive environment she once again began to thrive.  Her language acquisition picked up, her use of language over tantrums picked up, and her demeanor was generally more calm and happy. 

Once she was stable in her day program, we focused on what she can do after her day was over.  After all, she was out of her program at 3 PM.  In her school years she had an extended program  until 7 PM.  We added another day for horseback riding lessons and working on the farm.  It has been beyond awesome.  We then added a gym membership.  She has gone from five minutes on the bike to twenty - twenty-five minutes on the bike.  She listens to music that added for her on my iPhone and pedals happily.  Before we go home she sits on the couch near the front desk and rests.  The staff comes by to chat with her and she is part of the tapestry of the gym.

Six months ago I was stressed and a loss of what to do.  I needed to get my tush in gear and make some changes but the thought of doing that was overwhelming.  The good news is that I did indeed make the changes that needed to be made.  She is busy with activities that add to the quality of her life.  Her day program has meaning, her afternoons have meaning, and she is happy.

What a difference six months makes when we make them make a difference.

Friday, July 11, 2014

The Hard Thing to Do is the Right Thing to Do

I really struggled with sending RJC to overnight camp for two weeks this summer.  With her increase in communication skills, she was incredibly crystal clear that she absolutely did not want to go to camp.  She wanted to stay home.  She left no doubt about that.

The guilt for the week before we took her to camp was incredibly strong and kept me up nights.  I believed, logically, that sending her to camp was the right thing to do for her and for me.  In my heart, I hated that I was forcing her to do something she did not want to do.  I worried because I did not know why she did not want to go - her communication skills just are not that developed for us to have that conversation.  As her sister was a counselor there last year (and this year) we had many conversations where she assured me that last year RJC was completely happy.  I knew that food was an issue last summer - she really did not like the camp food and was probably hungry.  Other than that, I could not think of a bad experience she may have had.

I thought about why I wanted her to go to camp.  For her benefit and mine.

For her benefit:  at twenty-two years old, RJC and I are still incredibly close.  We spend a great deal of time together and truth be told, we both enjoy that time.  There is, however, the circle of life issue.  It is simply a fact that I cannot get away from, as the  years go by (and I am feeling those years, believe me).  I need her to feel secure with other people.  I need her to make connections with other people.  I need her to communicate with other people.  Being at camp for two weeks allows her to truly experience time with other people and realize that she can enjoy that time.  I also wanted her to have experiences that she does not normally have on a daily basis - boating, language arts, music, swimming and other recreational activities (and taking a break from the iPad and Barney).  Just as importantly, if not more importantly,  she was taking care of herself more independently - using her words to communicate with people she does not know well, navigating a new schedule, sharing living space with more people.  To be able to do this successfully and know that she is ok - this is the gift of overnight camp.

For my benefit:  in truth, it's simple things.  Sleeping uninterrupted (well, except when my own issues keep me up - lol), sleeping in the dark (heavenly), choosing how I want to spend my time, having quality time to focus on my marriage, and not having to concern myself with child care if we want to do something so we can spontaneously make a decision about what to do.  Even the quiet of our household has been weird but nice.  We watch television shows without Barney in the background, we do not repeat the daily schedule (or weekly schedule, or monthly schedule) a zillion times a day.  Ok, twenty - fifty times a day, but it feels like a zillion.  

I did do a few things to make myself more comfortable with this.  I bought food for her and gave it to the camp.  This way I know she is not hungry (a Jewish mother's nightmare, you know).  I spoke to the counselors about helping her brush her teeth, letting her call whenever she wants to, and that I was concerned about her sleep.  The camp, on their part, has emailed me to let me know she is eating just fine, the other campers get along well with her, and that she is sleeping great.  She has called once - told me she went horseback riding and sounded just fine.  She has only been there for five days so I can only continue to pray that the next week and change is just as positive. 

Parenting any child is a challenge.  No doubt about it.  Add the autism spectrum to the mix's just a different challenge that truly has me second guessing every decision.  We are still making decisions for our adult daughter on the spectrum - decisions that other parents do not need to make when their child is twenty-two and older.  While I worry about my younger adult daughter, it is a different type of worry.  I trust that she knows how to make good decisions and we can have in depth conversations as needed.  With RJC, I am making decisions that she may or may not like, but her dislikes and likes are not based on adult thinking.  I have to be the adult making decisions for her and while I will always take her "wants" into account, I need to take her "NEEDS" into account.  That's my job so that she will be able to have a functional, happy, safe, adult life without me.  And sometimes the "wants" and the "needs" do not mesh.

That's when the hard thing to do is the right thing to do. 

Friday, June 27, 2014

Too Much Time Together?

I've been home full time for two weeks now.  RJC and I are spending a huge amount of time together on a daily basis.  I used to come home at 6:30 PM so my husband was spending three hours with her each day by himself.  By the time I came home it was time for dinner, the nighttime routine and bed.  Now that I am home full time I am doing the drop off and the pick up at her adult program, so my husband can work overtime.  This means that RJC and I are together for all except six hours a day.  We find activities to do together in the afternoon so she is not sitting around watching television or playing on the iPad.  The down part of this...she has become so used to my presence that if I am out of site I will hear the yell "WHERE"S MOMMY?"  I can literally be in the next room (and we have a small house) but I will hear the battle cry.  She will direct most question to me rather than her dad.  When he tries to respond she wants none of it.  She has quickly gotten used to spending time together and is starting to show a dependency that concerns me. 

On the other hand, there is a very positive aspect of all this time together. In just the few weeks I've been home I've had a great deal more energy, patience, and opportunity to work on some of the behaviors that are stopping her from working out in the community.  She is a smart little cookie but her disruptive and sometimes frightening screaming behavior is a barrier to her future.  I've decided to focus on this issue and have been working a great deal on "Use your words." For example, at her day program I was told that she was screaming because she wanted more ice cubes (I am not making this up, the girl screams over ice cubes).  Our conversation went something like this:

Me:  RJC, there is no more yelling.  You need to use your words.  How many ice cubes do you want at lunch?
RJC:  Three
Me:  Say, "I want three ice cubes please."
RJC:  "I want three ice cubes please."
Me:  Good job.  No yelling.  Use your words nicely.
RJC:  "I want three ice cubes please."
Me:  Yes.  Good job.

The next day we practice in the car on the way to her program.

Me:  What will you say at lunch today?
RJC:  "I want three ice cubes please."
Me:  That's right.  There is no yelling.  Use your words.

When I drop her off at her program the staff is there and we practice so the staff knows the expectation.

Me:  What will you say at lunch today?
RJC:  "I want three ice cubes please."
Me:  Good job.  There is no yelling.  Use your words.

All went well that day at lunch.

The tough thing is that she does not generalize this behavior.  Her initial reaction to almost everything - small and big - is to yell.  If she is to ever work in the community or even when we are out and about in the community, this is not appropriate behavior.  At twenty-two years old it is time to get this under control.

Since we are spending more time together, I have had more time to work on this issue.  There are plenty of opportunities.  We went miniature golfing and she was hot so she was yelling, "SHADE."  When I say yelling, I mean loud. There were no trees for shade nearby and people were staring.  She was agitated and irritated and not responsive in any way to my prompt "Use your words." 

Me:  RJC, you need to use your words.  Stop screaming.  If you use your words quietly then when we get home you can have some cookies and cream candy bar.
RJC:  (thinking it over and more quietly now):  No home.  I want candy.
Me (slightly panicked):  There is no candy bar here.  It's at home.  No more screaming for some candy bar (and I'm now thinking why oh why do candy bars have to melt in hot cars)?
RJC:  Look over there, it's a snack bar gummy bear.
Me:  (realizing there is indeed a snack bar):  Do you want gummy bears at the snack bar?
RJC:  Yes please.
Me:  No more screaming while we play golf.  It's not nice.  Use your words.  There is no shade here.  In the summer the sun comes out.  No more screaming.
RJC (giggles):  It's summer.  I want gummy bears.  The baby is sleeping, shhhh.
Me:  Yes.  No more screaming.  Use your words.

She held it together.  I would remind her that she was doing a good job and I bought her the gummy bears.

This is a huge amount of work but since we are spending so much time together there are also many opportunities for working this on behavior.

Somehow though, I need to balance the positives of working on behaviors without allowing our relationship to turn into a dependency.  My husband encourages me to get out so they still have time together without me.  I have made plans for her to go to overnight camp again this summer for two weeks and she has been clear that she wants to stay home.  She did fine last summer and my other daughter, who works at the camp, has reassured me a zillion times that she had fun and was not at all unhappy.  While she prefers to be home because it is easier she needs to know that if I am not around she is still able to be ok.  I completely understand this.  Still, for me, this is a dilemma.  I hate it when either of my children are unhappy.  Hate it.  It makes me physically ill.  However, I am also incredibly aware that I am getting older and she needs to be ok without me always being in her presence.  For whatever reason, this year is the year that this has become increasingly obvious to me.  I wish I had worked on this issue earlier, when she was considerably younger, but I didn't.  Big mistake.

So, I am working on the screaming behavior for her and BOTH of us are working on the independence issue.  I am also aware that my discomfort cannot keep her from learning the skills she needs to grow into the most independent adult that she can be so that she has opportunities in her future rather than limitations.

The question remains.  Too much time together?  Parenting.  Man.  It's tough.