Thursday, March 23, 2017

The Depressing Reality

This post is about the depressing reality of our lives. We are parents of two children, one typical adult and one adult diagnosed with autism. This post has been rolling around in my brain for a while, and just about every day either a conversation I've had with a friend, an article I've read, or an experience I've had, adds to what I would want to share in this post. Before it becomes a novel I have decided to get this down in writing.

It all started a while ago, when I saw an autism mom's video. She talked about a lot of things, but what has haunted me was when she talked about her worry about who will be at her son's funeral. I do not believe she meant to be morbid, nor do I, as I am writing about this. It's just one of those awful facts of life that if the circle of life goes as normally expected, we will be dead before our girls.

It so happens that my girls have no first cousins. We are also a family quite spread out across the country, so we don't see extended family often. In the case of my "typical child" this is not such a big deal. She can keep up on social media, if necessary she can pick up the phone (gasp) and at family functions she can chat and catch up with everyone. She has an understanding of the concept of family. Not so in the case of our RJC. Though we have been blessed with a family who is concerned about her and loves her, she is not necessarily as familiar with them. Those who are closest to me are in my general age bracket and therefore the chances of them being around longer than's the same circle of life issue.

So other than her sister and hopefully whatever family her sister has, who will be at her funeral? Will there by anyone except perhaps her sister, the Rabbi, and any people he can gather up to be there - possibly strangers. Not only that, but will anyone be around to miss her, other than her sister? Who will she be important enough to that they will take time out of their day to be with her when she dies and when she is buried. Talk about incredibly depressing.

I then think of her aging process. I'm in my mid-fifties and I've started to have my share of health annoyances and scares. She cannot possibly understand how to truly take care of herself and monitor her body's changes. At this point, even I am often guessing how she feels. It's one of my major autism hates - the fact that I really do not know with complete certainty if she is feeling ok. Nevertheless, I am absolutely on top of that. I check in at various times to see that she has no new scrapes or marks, doesn't seem to have a fever, isn't congested, etc. When she is older and I'm not around, what will happen if she has aches and pains but no way to share that information with her caretaker? Or what if her doctor does not think her life is worth fighting for? Or if the medical insurance company does not think her life is worth fighting for? And if there is some type of treatment she needs to go through, who will be there with her? How will she handle the discomfort/pain of a treatment without understanding that it's supposed to help her?

Then comes the pain of knowing that once I'm gone she will not have any understanding of where I am. Will she think I just left her? Will she worry that she did something wrong so I left? Will she wonder if I'm coming back? The concept of "death" is just not one I can explain. She will sometimes ask for her Grandma or her Uncle and I say, "Where are they?" and she will reply "Dead." But it has no meaning, obviously, since she still asks where they are. She probably assumes "Dead" is a state like "Florida" or "Texas."

All of this is incredibly heartbreaking to me. Then on top of this is the worry about finances. She is not going to make a living that will support her. Ever. This means that she will not receive health insurance through a job. Once we die (or stop working) then all of her health insurance will need to be from the government. So she becomes one of "those people" who are "living off the state." Well yes. What does that mean? That I shouldn't have had this beautiful soul because once I'm gone she becomes a "burden" to those who cannot fathom her value? Should we have had another child or two so that they could help her sister take care of her? Not like we didn't think about that - but we also realized we could have another child and that child would need care as well. It was not a risk we were willing to take.  Maybe we made the wrong decision. But maybe not.

So when I try to sleep at night, this is the sort of thing that goes through my head. Over and over. I read articles about the federal and state budget and that does nothing for my sleep. I try to calm myself and remind myself that there is no sense in worrying about these things. Time will tell.  None of that helps.

There are no answers of course. I do not know what will happen in the future. Nobody does. So there's just getting through the day, trying to put pieces in place for her, and praying. Feel free to join in.

Sunday, January 15, 2017

I'm Another Year Older

I had my birthday a few days ago and I am now officially closer to sixty years old than I am to fifty.

Today, RJC had a pretty bad hour. It was one of those situations where we couldn't do much of anything except ride it out. There was screaming and pinching and jumping and banging into the wall and frantic hand gestures and even some tears (which we rarely see). It so happens that I also had cataract surgery recently so I was terrified that her flailing hands would hit one of my eyes. Something I honestly hadn't worried about before - if she hit me, she hit me.  When things finally calmed down, she was a mass of sweat and we were a mass of nerves.

Talk about a dose of reality. I could not help but to think, once again, what is coming for us in the next fifteen years or so. My husband and I are getting older. This means a greater chance that medical issues will come up. It is probable that we won't be as strong or as steady. She, however, is still young and strong and, well, diagnosed with autism. This means she will continually need 24/7 support, including people who can help her get through these difficult moments without her (or them) getting hurt.

She also needs happiness, safety, and love.

So what's a parent to do? Yes yes yes I am aware that there are group homes. I am also very aware that getting her into a group home isn't possible right now (it's a State thing) and I'm also looking for something different for her. I'm not convinced that a group home setting is the appropriate place for her. I'm trying to think of alternatives but I haven't settled yet on what would make me comfortable for her. Not completely anyway, though I have some thoughts.

I am starting to seriously think that we need to find like-minded people to sit down with (people looking for something different than a group home setting), draw up a plan, and figure out what steps we need to take to make this (whatever it is) happen. I imagine that money will be a huge obstacle, as will property (tightly intertwined to the money issue), legal issues, finding those like-minded people, and about a zillion other things. To this point whenever we talk about our dreams for our gal they seem so insurmountable that I freeze. In truth, it's kind of at that point now where it's (as my mom used to say) "Poop or get off the pot" (she used a different word for "poop". Just sayin').

Today was pretty eye opening. Maybe it will give me some oomph to move on this. My fear is that I'm tired and overwhelmed with what I'm doing as it is. Hopefully I'll find the strength to pull this together and at least get a start at chatting with people. How hard can that be? A step at a time and see where it goes.

For my gal. For myself. For my family. For other families. Because she deserves to be happy and safe and loved.

Saturday, December 10, 2016

Autism and a Mental Health Day

Recently I had the opportunity to be home with RJC for what we typical people would call a "Mental Health Day."  During the course of that day, it occurred to me that we have very high expectations of our kids and adults who are diagnosed with autism. In fact, we seem to expect better behavior from them than we would from ourselves. How odd.

For example, there are people who get frustrated or angry so they yell, swear, bang things around, slam doors. Not that these are good ways to express frustration or anger but they get it out. When RJC feels that way, she yells, pinches, throw things and makes holes in the wall. Then all the adults in her life talk it over, try to figure out the triggers, create a "program" to avoid this happening again. We then expect that she will learn a different behavior. Um. Ok. But I still get super quiet and distant when I'm frustrated and angry, and I've been known to bang a pot or two around, and nobody has ever come to me with a program and insist that I change my behavior. Yes, of course we always want to give her proper tools for those emotions, but shouldn't we acknowledge that she has the right to those emotions? And that there are probably many times she has those emotions and handles them quite well!

My gal goes to her Day Program every day except for the seven days the program is closed and the two weeks that she is at overnight camp (which is still a program). As adults, we usually have the option to take time off from work. Usually somewhere between ten and fifteen vacation days at a job we are just starting and often more days if we have worked there for longer. We also have the standard Federal holidays (probably seven to ten days) as well as sick days allotted. Yet RJC has seven days. Total. Those seven days we may or may not do what she wants to do, as we may have family obligations or other reasons why we need to go someplace she'd prefer not to go. Still, we usually go someplace because we don't want to be bored at home.

It has never really occurred to me that perhaps she needs some time too. Honest to goodness "down time" where she has nowhere to be at any specific time, nothing she "must" do, just to do whatever she wants to do at the time. Recently, I was away for five days and when I came home I had cataract surgery that had me out of work for three days. I was told that at a program she attended one of those evenings, she mentioned "mommy's eye" and I was so shocked. Yes, I know she is aware. It just did not occur to me that she gave it much thought when I was out of her sight. Obviously, she does.

The third day I was home, I had originally planned on being able to drive however that was not to be. Instead of having my husband or daughter drive RJC to her program, I asked her if she'd like to stay home with mommy. Well, the smile I got told me everything! At some point during the morning I asked her "Get dressed or stay in pajamas?" "Stay in pajamas please!" was the response. So stay in her pajamas she did. As the day wore on I could see that she was truly enjoying her time doing her thing on the IPad and sometimes looking up to say something to me. It was a lovely day. I took a nap (in the living room with her and turned on the door alarm - just in case you were worried as you read this). We had lunch together. We did nothing but enjoy being around each other.

The best part of the day was when she looked up and said, "Thanks for the relax with mommy." Oh, my heart melted. And that's when I realized that we never give her the option for a mental health day. Well, why not? Her Day Program is like work for her. She has to work hard to listen, communicate, stay in control. All things that are difficult for her. She needs down time as much as we do. On top of that, we have never known her to have a headache, a stomach ache, feel incredibly tired because she didn't sleep well, feel stressed, or...well...really anything. She doesn't have the ability to communicate the smaller issues we deal with during the day or the twinges of dismay or frustration we feel during the day. She cannot vent to a friend about the frustration of being with people she may not like. Whatever it is that we share with our friends over the phone, over coffee, over drinks, over ice cream, even over Facebook - she does not have the opportunity to do any of this. So where do those emotions go? Internally, I can only imagine what goes on for her.

I'm thinking that I will need to offer a mental health day again. Perhaps a day to spend with her sister, or dad. Maybe we need to take a step back and really pay attention to her anxiety level and instead of thinking "well, it's the autism thing and we never really know" instead start to think "well, it's the autism think and we never really know so maybe she just needs a day to do nothing but stay in jammies and hang out on the couch."

Because we all need that kind of day sometimes.

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.