Saturday, July 2, 2016

Breakdown of a Tantrum

Today's tantrum was brought on by...the iPad.

When we are in the house, this is her primary way of amusing herself. She sits in the living room with us, puts on her headphones (usually) and happily watches Barney on YouTube or adds events to her calendar that she is planning for us to do. For the most part it is a smooth process. Until the iPad stops charging.

We tried a few things at home but couldn't get it to charge in the specific area where she likes it to charge. We had taken to getting her in the car in the morning and I would secretly plug it in where I knew it would charge and she'd be happy to retrieve it in the afternoon and play with it until it died which was usually just before bedtime. She'd go to bed, I'd secretly plug it in again and in the morning she would once again happily retrieve it. Picture the cycle.

Today, the cycle was broken. As it was a day she was home longer than usual, it died early in the day. There was no way she would allow it to charge other than in her specific place. So the hubby gets an extension cord and it works quite nicely in her special place. BUT the extension cord doesn't belong there and she refuses to allow it. Let the screaming begin.

She sits next to me, screaming and flapping her hands, considering pinching me (she would just start to squeeze then stop) and jumping up and down then sitting down again. Her face and arms look like she has a sunburn. Trying to talk with her just makes things worse so it's a very helpless feeling. It's hot in the house so I decide I'll try to get her outside where at least there is cool air and maybe the screaming won't sound so loud. She wants to be with me so she follows me outside and we start to swing together on our wooden swing.  She's still screaming but the neighbors are having a party so their music really stops it from traveling and I'm happy to have something else to listen to. I hold her hand and her yells are becoming more intermittent.

I text hubby about dinner and she is calming down. She wants to look at the pictures and videos on my iPhone and I consider the possibility that my phone will go flying. Well, I bought the fancy protection cover and paid for insurance so I decide it's a risk worth taking. She finds a video  of herself laughing and now, as she is watching, she's smiling. I can hear her breathing is going back to normal and we may have turned a corner. While we are outside, my hubby plugs in the iPad to the extension cord and we are hoping she will be outside long enough for it to charge.

We are outside for a while and now she's starting to feel bad. When that happens, it's almost as heartbreaking as the tantrum itself. She really knows she shouldn't be screaming like that, or hurting herself, and feels especially bad that she may have hurt me (which she actually didn't this time).  I start to hear things like:

"I'm sorry mommy."
"It's not ok to yell and hit and jump."
"We were having fun until the screaming and yelling."
"Are you hurting ears mommy?"

I reassure her that I'm fine and it's time to go inside for dinner. Even then she wants me near her and continues to apologize in her own way. She looks intently at me. While I know that those diagnosed with autism often do not "read facial expressions" I believe that she knows me well enough to see anger in my face and it is important that I maintain a neutral affect. I speak quietly, continuing to respond to her scripting and she is starting to relax. She eats and is finished before me so she stands next to me while I eat. It's disconcerting but again, I know that she needs to be nearby and keep watch to be sure we are ok together.

I clean up from dinner and she spots the iPad where hubby had plugged it in earlier. She walks over, sees it's working and lo and behold she is perfectly fine with leaving it plugged in to the extension cord that just an hour or so ago was the cause of such angst.

I'm not going to pretend that all is well at my end. While she is fine now, my stomach is churning and I'm frustrated. Why couldn't we have found a way for her to understand that we needed to do this to fix the problem  and to be comfortable with a miniscule change such as plugging her iPad into an extension cord. This is where I start to doubt myself. Did I use wrong words? Was I not sensitive enough to how she feels about change of any kind? What could I have done differently?

There are really no answers to those questions which is even more frustrating because it means that as sure as sure as can be...this will happen again. It may not be over the iPad but it will be over something that makes me shake my head and have conflicting feelings of annoyance with her, frustration with the situation, anger at myself...

and finally the acceptance that this is just autism. 

It's not her fault. It's not my fault or my hubby's fault.
It just is.
Which is why we need research and more research.

And in the meantime, we will just keep on keepin' on and do our best in love.

Wednesday, March 30, 2016

The Future Is Now (?)

Before I write anything else, I need to state that the health issue in this post ended well. That being said...

I had to have a procedure that was going to require anesthesia. My concern was that I would be unavailable to RJC if there was an issue of some sort. We are used to having a Plan A and a Plan B, but in this case I could not get a comfort level with being so completely out of touch. We needed more plans.

Luckily, we have amazing friends. So here's what we had:

Plan A: Hubby is with me in the hospital and Naomi brings RJC to her program and picks her up at the end of the day.

Plan B: If there is a problem with RJC, Naomi comes to stay with me at the hospital and Hubby leaves to take care of the issue.

Plan C:  Hubby leaves and friend A comes to the hospital.

Plan D:  Hubby leaves and friend B comes to the hospital.

While this may seem like overkill, I could not manage to relax (well, become less crazed) until we had a few plans that were workable.

Once this issue was worked out I had to give thought to the bigger issue. What if I had cancer? How would I be able to handle RJC issues with a huge health issue? Then the really big issue. You know. The one where you have to give some thought to your family member's futures without you. That really big one.

It's very strange when the big fear you think about so often, and talk about with your husband, manages to become just a little more real. On the one hand, I spent a great deal of time self talking myself into the idea that nothing would happen, and all would be well. That really was my focus. However, night would fall and so would any bit of positive thought. I had myself killed off and tried to imagine how my family would deal. Sometimes in my mind it worked out fine. Most of the time I pictured this big empty picture frame. I could not even imagine what would fill in that frame. I simply could not figure out what would be best for RJC, what would happen to her with me not there. I guess I had thought that when the time really came, we'd work it out. What if this WAS the time and it was really coming? Oh my gosh, I literally had no clue.

By the time the procedure came, I still had no plan for my girl. Talk about failure. But there was nothing at all I could do except hope and pray. So that's what I did.

As I write this, I am beyond relieved that the procedure is over and I had a good outcome. But really - hope and pray? Is that all I've got? Even when the issue may be coming to a head, that's the best I can do? 

There's really no ending to this. While I hate to leave this sort of dangling, it's where we literally are in the reality of the issue - dangling. My last thought on this issue right now?

We need to figure this out.


Sunday, March 13, 2016

Rough Waters

I like to think that I have a generally good attitude on most days, about most things. It concerns me that this week I have not only had a bad attitude, I have been downright annoyed. Gritting my teeth until my jaw hurts. This week, autism has been complicated and frustrating and I am not handling it well.

We are in rough waters.

It so happens that for whatever RJC reason, she is having a very difficult time. There have been episodes of screaming that seem to come out of nowhere.  If we were to try to complete an ABC chart (antecedent, behavior, consequence) we could not begin to figure out the antecedent. 

Last night our family went to a restaurant of her choosing. She was excited to go, and knew what she was planning to order before we even arrived. t was a Saturday night, which tends to be busy, but we've managed to go out on plenty of Saturday nights without any issues. This was not one of those nights.

It's one thing when we know what the issue is, but when she starts screaming for no apparent reason feelings of panic and helplessness overcome me. At this moment, it's about damage control. Trying to contain whatever this "thing" is within, that is making her so miserable. We don't want her to hurt anyone or throw anything. She was screaming loudly, and I was apologizing to the people behind us (who, thank goodness, were very nice). I tried to get her to leave but that made her scream more loudly. When she was little I could pick her up and carry her out but we are way past that stage. I finally convinced her to go into the bathroom with me. When we got there she was still screaming so I offered to wash her face. She had been yelling so loud that she was sweating through two shirts. I took the long sleeved shirt off of her, and she was not in just her tshirt.  I washed her face with a wet paper towel and she suddenly leaned into me, put her arms around me and her head on my shoulder. I put my arms around her and we started to rock back and forth. We stayed like that for quite a while, and I could see in the mirror that she was closing and opening her eyes. I could feel her body start to relax and eventually I asked her is she was all set to eat. We were able to return and successfully finish dinner.

Since being home, she has spoken nonstop about "trying again." After the fact, she is aware that there was a problem and she always wants to do it again so she can get through it successfully. She asks me to tell her the story about "RJC at the restaurant" so I tell her something like:

     Once upon a time, RJC and mom and dad and Naomi went to the restaurant. RJC ate and was very quiet and happy. She even had dessert. The End.

The she says, "That's a great story, mommy." We will repeat this general story and her response until we actually do return to that very restaurant and give her a "do over."

For her, the worst of last night's issue is over. For me? Not so much. All day I have been edgy. My stomach is off, I am gritting my teeth, and for the life of me I cannot stop thinking about it. I have obsessed most of today about what the problem was - why the behavior? Why is happening more often and why can't we figure out the cause? I've thought about the standards - she doesn't feel well physically, the change of weather, moving the clock. While I can see these things affecting her to a point, I just can't seem to believe it would cause these big scenes we are having.

This coming week can be a continuation of this behavior, or not. That's the really rough thing to deal with because it means I'll be edgy, just waiting for that phone call that there was a problem, or waiting for this behavior to rear it's ugly head again when we are out and about in the community. What to do, what to do?

You'd think that after all these years I'd know how to deal with this. I don't. Instead, it makes me more edgy and more grumpy. I think part of it is that I am getting older, but I also think a large part of it is that I feel so doggone bad for her. She obviously does not want to behave in this way. Something is obviously making her unhappy. She obviously cannot communicate her feelings in a constructive way. So why can't the root of this issue be obvious so that we can solve the problem? This is the sort of behavior that will keep her from getting a job. It is the sort of behavior that makes me worry that somebody may hurt her because they are scared of her. It is the sort of behavior that makes us hesitant to bring her places or for people to extend invitations to us that include her.

It is the sort of behavior that has me fearing for her future.

I'm sure that with a few good days this experience will fade into the background and it will slip to the corner of my mind.  I feel just as sure that this is not the last time we will deal with this.

Rough waters.

Lifeboat anyone?

Thursday, February 25, 2016

An Issue So Complicated It Cannot Be Titled - Warning: Long

This is a complicated issue, not only to write about but to think about. It is certainly complicated to figure out what to do about it.  It is both a practical and emotional matter. In fact, it is so complicated that I am not sure how to title the actual subject matter. Please stay with me while I try to explain. 

When a person becomes a parent, their child's needs trumps theirs. Mom or dad may be sick, but their toddler needs to eat, their preschooler needs attention, their grade school child needs help with homework. Mom or dad does what needs to be done to care for their child.  As that child gets older, their independence grows. Mom or dad is sick and they can take a nap because their child is capable of knowing when to wake them if they are needed. Time goes on, that child ages, and now that child is able to stay home by themselves. Mom and dad want to dash out to the grocery store or the bank and they can. Their child is fine to stay home for a short period of time, gaining confidence in being able to be self sufficient. Eventually, that child is able to stay home alone for longer periods of time, overnights, and eventually are able to move from their parents' home into their own place.

So. What happens when a child needs constant supervision? The child get chronologically older, however the ability to stay alone, even for a short period of time is not a possibility. There are children who do not go through those same phases leading up to independence because that day is not going to arrive. The parents may have assumed that certainly once their child was 16-18 (if not younger) they could come and go as they please. Want to have dinner out? Let's go. Want to take a walk in the park? Let's go. Want to visit the next door neighbor? C'mon. Want to spend a romantic, private weekend together? We've off!  These same parents have dreams of retirement.  They may have put away money just for the purpose of being able to quit working and spend time together doing what they dreamt about and talked about during their marriage. Perhaps they considered moving to a different area of the country, traveling the world, downsizing and decluttering. Maybe they thought they'd have the time to spend reading, talking, and just being together. Their main focus would be each other, while of course remaining available to their adult children when they were needed and being a useful member of their community. 

What if there was a situation that came about, where that very couple, with those very dreams, had to change course. We are one of those couples. For us, those things are not going to happen. We are both in our mid 50s and we cannot just decide to zip out for dinner, to take a walk in the park, etc. We are pretty used to these sorts of things, so it's not actually that big of a deal. We've adjusted to scheduling around our gal and making sure she has proper care on a day to day basis. It's often tricky but we get through it. Our weekends are pretty much scheduled around her (and usually by her) and that's fine. Even if RJC wasn't living with us, we would want to be close by to keep an eye on her safety and happiness. We would always want to be in control of her finances and make medical decision for her. She is ours, regardless of where she lives.  At this point, she does live with us and we do not foresee that ending any time soon.

The issues surrounding our aging and our potential retirement has been on my mind lately. It's really not all that far off (relatively, anyway) and I am tired at the end of a day. I need a plan for our future. Not just my husband and mine, but my daughter's as well because her future directly impacts ours.

We have lived in this same town for RJC's entire life.  People know her and recognize her, and she knows and recognizes people in many places we go on a daily basis. She has favorite places to visit, activities she is involved in, peers she is comfortable with, and most importantly, she currently has a budget for her Adult Day Program.  We cannot move out of state because this is where she is comfortable, and this is where she has services.

If we were to move, and she were to come with us, we would be taking away her entire support system. She's been involved with the same Special Olympics team for 15 years. She has friends at Friendship Circle who she is comfortable with and has known for 8 years. She has the farm which has a become a huge source of both fun and where she learns important life skills. She knows how to get places, where she likes to eat, where she prefers to shop, what movie theater(s) she prefers, and even where she likes to sit in various friends' houses. This type of comfort is what keeps her high anxiety in check.  She has even been know to feel relaxed. She receives services from the state that allows her some time out of the house to spend with peers. This is truly something we are grateful for and she has come to count on this as part of her routine.

My husband and I have talked endlessly about the future.  Our dreams we had for moving, traveling, privacy, and spur of the moment decisions are not ones we have given up on, but we feel them fading away. We chose to have our children and we have one child who is stuck in perpetual childhood.  Though we are chronologically aging, we parent our older daughter the way we did when she was a young child.  It is necessary in order to keep her safe.  It is difficult to not feel a huge sense of loss. Yet when I let myself even consider feeling bad about the loss of our dreams and the need to figure out some other way to find a way to be happy in our older years, it feels like I've betrayed my commitment to our daughter. I  have never regretted our life as a family. We've gone through rough times to be sure, and I've wished we didn't. But never, for one moment, did I wish we did not have our girl in our lives. And I still feel the same way. She is a gift, just like our other daughter, and we need to figure this out.

We need to figure out how to grow old together as a married couple. We need to figure out how we are going to find the right living situation for our daughter so that we have some privacy - BUT that situation must also meet with my very strong personal need to be nearby. That, in turn, means giving up the dream of living in a warm climate or near family. And that, in turn, means finding a way to be completely at peace with the life we will have, which is not the life we once envisioned. And I suppose that can be much like going through a grieving process.

Perhaps I am at the beginning of that process. Just the fact that I've been thinking about it, talking with a close friend or two about it, and of course, talking about it with the person closest to me in the world who is walking the same path. I'm not sure when the whole acceptance thing will be reached. Maybe once there is a plan? Maybe once the plan has been implemented? What I've noticed is that not many people talk about this openly. It's a difficult topic and my thoughts on it literally change on a daily basis. I can go from hopeful to feeling complete despair in a matter of minutes.

Whatever options I have thought of, it always comes back to sacrificing our own desires to do what we believe is best - not for us, but for our child. Because though the world may think of her as an adult chronologically, we know and live with the reality that she is developmentally a child.  It is with this knowledge that we talk and plan and rethink and talk some more. Hopefully in time we will find new dreams for our future that fit perfectly with the dreams we have for our daughter's future. Then we can grieve and heal and move on.

All of us.

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.