Saturday, January 23, 2016

Independence for All

I will be the first to admit that RJC and I are generally attached at the hip.  It's always been difficult for me to "let go" and as she is getting older, I still struggle to find opportunities that are comfortable for me to give her some independence.  I'm certainly better at it than I used to be.  I was that parent who, when their child was going on a field trip, would scope out the venue ahead of time and give the teacher a map of where potential spots of issues could take place.  True story.

She now has been at overnight summer camp for two weeks. Three times! Each year I feel a bit better about it. The first two years, her sister was a counselor at the camp, but last year RJC went by herself. We all did fine. When the opportunity came up for me to go to Canada for four days, it was something I desperately wanted to do.  As the time came closer to leave, I was getting pretty nervous. In truth, if it was not a trip that I was incredibly excited about, I probably would have cancelled it.  Happy to say, it was incredibly successful.  Here's a few reasons why.

1. Preparation:  She was staying home so that did make things easier. I wanted her schedule to be as uninterrupted as possible.  I wrote out a two page schedule of where she needs to be and when. I went over it with my husband and with RJC (though she promptly threw hers in the garbage). Still, she completely understood when I was leaving and when she could expect me back (with a cushion - just in case).  Though I don't think I needed to, I organized her clothing for each day and gave it to my husband so it was one less thing to think about.

2. Schedule: My husband and I scheduled things to keep her busy so she wouldn't have time to worry and she just might be tired at the end of the day.  I dropped her off at her program on Thursday and left for the airport, so my husband took over from that point.  Thursday, he picked her up from her program and that night they went out to eat.  Friday she went to her program, then they went to a friend's house for Shabbat dinner.  She had been there many times previously and loves going there. Saturday, she went to the farm where she spends many weekend days, so it was familiar and loved activity. She was there from 9-3. Hubby took her out for dinner.  Sunday morning she went to the farm for 3 hours, then they went to visit Grandma and Grandpa. Monday she was back at the program and when she came home I was here already.  Keeping her busy was incredibly helpful. She only called one time and even then it was just to go over her schedule and hear me agree that what she was expecting is what she was doing.

3. Trust:  I completely trusted that between my husband and my younger daughter, they would be fine. Over the past years especially, they have created their own bond with RJC and she is happy and safe when she is with them. Any time I had a thought that my leaving was not a good idea, I remembered that we are a family of four. Everyone has their own way of doing things with her, but she understands and accepts that. 

I am already planning my next trip. Not that there will be one. But if the right one comes along, I am totally there.  Without regrets.

Wednesday, December 16, 2015

My (New) Favorite Store Reminds Me of How Lucky I am

First, some background.

RJC goes through headphones the way I go through chocolate.  That's a lot.  She has broken the wires, had headphones where one side stops working, has screamed because they are "too small" or "too tight" and has broken them in various other creative ways.  We have bought various brands, various sizes, various prices.  They do not last. 

We live in a raised ranch where the living room, dining room, and kitchen are all in close proximity.  There is an opening even from the dining room to the kitchen so as a family, we are together.  Often.  We watch television in the living room and RJC has her spot on the couch where she watches videos on her iPad and listens to music.  If she does not use the headphones, the rest of us cannot watch tv.  As a side note, even when we are watching tv and she has her headphones, she often breaks into song and we pause our show.  We've made the choice to do this because we like having her with us and we've noticed that she picks up conversation around her even when she seems focused on her iPad.  We take socialization and communication any way we can get it.

So, fast forward to last night when she is screaming because her headphones are too tight and she wants to throw them away.  We try talking it out but there is no way that this gal is using those headphones ever again. 

Today, my husband and I go to Staples so we can buy a new set of headphones.  We absolutely cannot go one day without them.  We look at the choices and we are clueless.  Most of them are the ones we have previously bought and then there are the really nice ones that cost a ton of money.  Hard to spend that kind of money for her to watch "Barney." 

I find a salesman.  He is a younger guy, big smile, very nice.  We explain our dilemma.  We tell him about our daughter and that we need headphones that do not directly go on her ears and that she often and easily breaks them.  We discuss the various ones that we were looking at (including a crazy conversation about wireless ones that I won't even go into).  Finally he says our best bet is...yup...the crazy expensive ones.  In truth, we had pretty much come to that conclusion ourselves but were hoping he had some magical ones we didn't know about in the back room.

We finally decide to take them, along with a 3 year warranty.  We never buy warranties.  But I swear we scored big with this one the way she kills them.  I thank the salesman profusely for all of his help and some good natured bantering goes on as another salesman states that HE was the one who actually found the headphones in the back.  It was quite pleasant.

While I am checking out, my husband leaves the store (we had separate cars) and the salesman comments that he loves how my husband and I work together as a team and that it must be important to do so with our situation. He says that it's nice to see a family like ours.  I explain that we could not take care of everything if we didn't work together and that we were also lucky to have our other daughter to help.  In fact, she had postponed her date with her boyfriend to watch RJC so that we could do this shopping.  He was truly touched and then asked another question (can't remember what it was) that led me to share a short story that gave him a better picture of how our family functioned.  He was so sweet.  Just amazed by what he was hearing and so kind in how he talked about our family.

I left the store incredibly pleased with our purchase. 

The best part, however, was that I left feeling really good about us as a family.  I felt lucky that we had RJC to pull us together and even luckier that we hadn't fallen apart. 

Who would think that a trip to Staples to spend a ridiculous amount of money so that our gal had headphones to watch "Barney" would help me realize how truly lucky I am? 

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'.