Sunday, November 27, 2016

RJC and Her Brain

Please note: I wrote this a few weeks ago, so the timing appears off as the election is now over.

RJC has a different brain. I truly believe it is both a blessing and well, not a blessing.

It recently occurred to me that as I have been agonizing over this election, reading posts and articles and watching all sorts of news shows, RJC has absolutely no idea as to what an election is, that there is an election going on, or why it's important that there is an election going on. This started me thinking about her brain.

She is 24 years old but her world basically consists of the "here and now." What she can touch. What is comfortable. What she cares about and likes. She communicates on a basic level about concrete things and does not have an understanding of abstract concepts. Routine is extremely important as it helps her to make sense of her day. Her anxiety goes down considerably when I am around.

On the one hand, how nice is it to have no worries about the future. It would not occur to her to worry about what will happen when she is 30 or 40 or 50 - because that's not part of the "here and now" and much too abstract. Her worries are what we would consider to be small - when can she go back to the Cape Cod house she enjoyed or where is that specific Barney video she wants. She has no concerns about who will be the next President because the concept of a President simply does not exist. She does not worry about whether or not there is global warming, about poverty, drug and alcohol abuse, freedom of religion. Absolutely none of the issues that we have heard about over and over the past few months are part of her world. I have to say - that sounds pretty good.

BUT. When I really stop to think about how her brain works and the limited understanding she has of her surroundings, it makes me sad. How anxiety producing it must be to get through a day. To have limited options in how she spends her time. She can't hop in the car and drive to a movie like other young adults. She needs to wait until it is convenient for one of us to take her. She can't decide to take a "mental health day" or a vacation day and stay home from her Day Program because she just doesn't feel like going. She isn't able to live independently in an apartment, choosing her own furniture or deciding on a roommate. She is not going to plan a wedding, plan a honeymoon, dream of having children.

The world is ever changing therefore her anxiety is a constant. Will there be a new staff she will need to figure out? When there is a storm, will the electricity go out - and for how long (the gal has an amazing memory and you can bet she remembers the 10 days without electricity that we had). When she runs out of her favorite bagels will mom or dad go out and get them in time for her next breakfast. Every small thing we may not even think about has the potential to increase her anxiety.

So is her brain a blessing or not?

Thursday, August 18, 2016

The Zoo Trip - Part 2 (Part 1 will be posted in a few days)

I am posting Part 2 before Part 1. I know this is odd, but so was this day!

A brief explanation - my friend Susan and I have been taking our children to this zoo, two hours away, since they were toddlers. When we started going, almost 20 years ago or so, we had four children between us. Two diagnosed with autism, the other two are the siblings. At this point, the siblings have moved on from zoo visits, but RJC and David enjoy these outings. They look forward to it, have their "system", enjoy each other's company in their own way, and will start to ask to go if we haven't made plans. So today, we made the two hour trip to the zoo, spent three and a half hours there, and were about to head back for the two hour return trip.

I'll be blogging about our actual zoo trip shortly, but here's part 2 of our day.  I'll title it "We Do Quirky."

We are on the way home and the car starts acting up - shaking and making helicopter noises - and it becomes obvious that we are not going to make the next hour and a half home. We decide to pull of the highway and hope to find a safe place to stop. Susan spies a restaurant and lucky us, we pull in to an area where there are a few restaurants, a hotel, a Walmart.

This is not part of our regular routine and RJC starts to yell. She's not a fan of out of the ordinary happenings. We talk about our options with the screaming gal in the back. David, thank goodness, is a mellow sort.  We decide to call AAA and our husbands, just to give them the general news and see if one of them is able to come get us.  Meanwhile, RJC is screaming for Appleby's which she spied when we turned in the street. We are trying to have a conversation with the lady from AAA while the gal is screeching for Appleby's. Challenging - but we manage to tell her where we are, have a pleasant conversation about the area and what to eat where, and get all set for the tow truck to come.

Next we call the husbands and tell them what's going on. My husband is just about to sit down in the dentist's chair when he explains that he needs to rescue us, an hour and a half away. Side note - this is the same dentist that he showed up to last week - a week early for his appointment (I can only imagine what they are thinking about this crazy man).  At one point we considered getting a hotel room, buying bathing suits, and perhaps staying the night but we decide that since my husband is ok with picking us up then waiting at Appleby's is best.  On top of that it appears to be the only way to keep RJC quiet.  We navigate the car over to the parking lot and head in.

The electronics that David has with him to keep him amused have now died and the crayons are only going so far to placate him but his mom to the rescue and she manages to distract him with a book bought at the zoo (of which he has many copies of at home) and gets him back to drawing. Eventually, everyone calms down and we are eating and waiting for the tow truck and the husband.

We eat. Tow truck shows up, husband shows up, we head back home.  It's a bit noisy in the car, mostly due to RJC wanting David's electronics since she won't watch her own DVDs because Susan is now sitting where she likes to put her own DVD recorder. Susan is sitting between the two and she is amazingly calm, switching electronics from one to the other, getting David to play a song that RJC wants to hear. Honestly, had I thought of it, I would have recorded it to use as an example of how to keep the peace without losing one's mind.

Happy to say, we make it all the way home and everyone is safe.  We managed the quirkiness and it was all good.

Here's the best part. We laughed through it all. Susan and I have been on many adventures together since soon after our children's diagnosis and this was one for the books. In a conversation we were having at the zoo today Susan summed up what we were talking about with the most perfect sentence:  "We do quirky."

Why yes we do.  And while we are doing quirky we have good days and bad days, good moments and bad moments. This had been a good day and it was not about to be ruined by a bad moment so we decided to "do quirky" and plow on through.

I really think we should have tshirts made. Anyone else want one?

Thursday, August 4, 2016

Not a Politically Correct Post (but an Honest One)

My gal has been away at camp for close to two weeks and we will be picking her up on Saturday to bring her home. Now, if I were to be politically correct I would tell you all how much we missed her and how I could barely stand it as the days were passing so slowly.

Here's the truth. This is her fourth year of camp and this is the first year that I have enjoyed every minute...and I haven't felt terribly guilty about it.
When we dropped her off at camp, she ran off quite happily. We've spoken on the phone to both her and her counselors (she asks one question, I answer, and then she is finished) and we receive email updates. All of this had lead me to be content in knowing that she is happy and healthy.

The first weekday that she was gone, I had a routine physical procedure that would have been beyond complicated to do if she were home. After the procedure I felt sick, but was able to sleep in the peace of our home. Hubby was the best caretaker ever. The next day we took a mini vacation to Boston and Cape Cod and we stayed for 5 days. I cannot begin to describe the fun and relaxing time we had, but suffice to know that it was awesome and included a Red Sox game, many hours at an art museum, and grown up restaurants! We were supposed to leave on Friday but changed plans and stayed through Saturday.

This second week has been different. We've both gone to work but after work the time is all ours. We can do whatever we want. We can change our minds and it's fine. We can eat late or early. We can go out with friends at a moment's notice. We can do errands that require concentration and time. We can exercise together, talk to each other, watch our own shows with no interruptions or distractions, sleep in the dark AND wake up in the same bed (without our gal pulling my hubby out so she can get in).

Now this may not all seem like a big deal, but trust me, it is.

Here is how our exercise at the gym usually works with our gal home:
I leave from work and go to the gym. He picks up RJC from her program, brings her home for a snack, then they meet me at the gym. Depending on how cooperative she is, I may wait 5 minutes or 30 minutes for them. They get to the gym and hubby goes off to exercise while I have RJC so we walk a mile around the track - no more, no less. She then likes to ride the bicycle so we go down to that area of the gym where she rides and I stand behind her to prompt her if she gets too loud. Hubby comes to find us when he is finished or when my exercise class is about to start (which can frustrate him because he isn't finished with his own exercise routine) - whichever happens first. They head home and I head to my exercise class before going home. Personally, I find this anxiety producing.

Here's what happened when hubby and I went this week alone:
We met home and went to the gym together. We worked out. We went home.

Now I feel the need to say none of this means that I don't love and adore my child or that I wish I had a different child or any of the other crazy things I've heard people say when somebody states the facts of their life with a child with autism. I am simply saying that a two week respite has been needed, appreciated, and taken advantage of to the max.

For parents of children with any special needs, or for those who are caretakers for their parents or partners or anyone else - it's ok to enjoy time alone. It's important to enjoy time alone. It's imperative to enjoy time alone. It does not make you a bad parent, partner, or person. Do I still struggle with this in my heart, even if I know it in my head? I do. But as time goes on the struggle is less and I am able to relax and enjoy without feeling horrible that I am doing so.

It should be perfectly fine to say "I need a break. I want a break. I have a break and am enjoying this break immensely" without fearing that we will be labeled as uncaring or selfish. I have loved my gal from the day she entered this world and I will always love her. Just the way she is.

But politically correct or not, I have come to terms with the idea that I need my two weeks.

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.