A Good Day

Today was the middle day of school vacation.  Two days behind us, two more days to go.  RJC has people to hang out with most of this week, but today was a mommy day and it was a good day.  A really good day.  One of those good kind of days that can almost make me forget the bad days.  A day to be cherished.

We met one of RJC's school friends and his mom to go bowling.  They bowled two games together - for the record, she bowled a 100 and a 110 without bumpers.  They fell into a nice routine, both obviously enjoying themselves.  RJC likes to acknowledge every strike and spare.  She "gets" bowling.  Then we went to their favorite restaurant where she ordered for herself but even better...she actually ate.  She didn't play with her food, she didn't waste her food.  She ate her food with obvious enjoyment.  No lunch is complete without ice cream so that topped off the meal and we headed home.

When we got home she wanted to bake "a yellow cake with chocolate frosting in two circle pans."  So she did.  She did everything independently.  She got all of the ingredients out, measured everything correctly, broke the eggs without shells getting into the batter, and used the hand mixer to mix the batter.  She knows that she can't lick the bowl (evil mom that I am) so she happily skipped off to play on the computer while the cake was baking.  Once cooled, she helped me frost the cake then helped herself to the first piece.

A few hours later we were off to Special Olympics track practice where she did quite well.  She didn't need me next to her at every given moment and participated quite nicely.  When we first arrived, she went to take a walk around the track, quite independently.  She really enjoys seeing
her teammates and the coaches so it was a nice way to spend an hour.  She broke her personal record for the Long Jump.  The weather was decent too!

Next stop - grocery store.  Another favorite activity.  This was a quick stop but she made sure to grab the pizza that she loves.  We came home and she made herself quite comfortable while she munched her dinner. 

So, it was a good day.  Nothing big happened, but our good days are when the ordinary happens and it goes well.  It's a lack of anxiety, limited yelling, and obvious contentment.  It's enjoying the people she's with, participating in activities she likes, and (like the rest of the world) enjoying a meal or two.  What's really cool is that when these days occur I really, really appreciate them.  It does not escape me that other people would find a day like today to be...mundane.  Just another day in the year.  But us?  Oh no.  It was a good day.  And good days are to be cherished.

The Challenge of Parenting a Child wtih Autism

I've been doing this parenting-a-child-with-autism thing for 20 years, 10 months, and 3 days.  Not that I'm counting.  Some days I do it pretty damn well.  Some days I really stink at it.  Many days it's a combination of both, but on my best days it's really neither.  The best days are those days where we just move through without too much of a thought as to how autism will play in our plans.  The challenge of parenting a child with autism is finding a way to have those best days.

Today it was the best of times, it was the worst of times.  Today was one of those days where I did some things pretty well, and other things - not as well as I wished.  RJC had spent her second weekend away and except for the first night where she didn't fall asleep until 2:30 AM (and apparently self-talked her way through the night) I understand it went well.  We went to pick her up.  So far so good.  Then she got in the car and started to play on her iPad - Angry Birds.  Well, let the screaming begin.  No matter what I said she could not gain a modicum of self control.  I am sure that being tired and anxious from the weekend did not help her escalated reaction.  To be clear, I am talking about the kind of screaming that people hear through closed windows.  It was that loud.  I tried to talk her through it.  Nope.  The plan was to go grocery shopping and then for pizza and she was excited about it.  It was on the calendar, and thus, it was to be.  I explained that we couldn't do these things if she was screaming.  Nothing I said was getting through and I finally drove home instead of to the grocery store.  It was the right thing to do, though this decision escalated her behavior into pinching and self-hitting her face over and over.  It was the right thing to do because it is important to never reinforce poor behavior.  It was not the right thing to do in terms of showing understanding of her autism.  I always have a difficult time with this balance.  From my behavioral point of view, I did the correct thing.  From my "mommy" point of view it was a pretty lousy choice to make.  I do not believe this was a conscious choice of behavior.  It wasn't like she was being a brat.  This was her autism taking over.  As a professional once told me, "She just doesn't have an 'off' button."  So what I did pretty damn well today was to make a choice to attempt to make a connection between her behavior and what she gets to do so that once she makes this connection she can learn to control her reactions.  What I did that was not so great was to resent the situation.  I was annoyed that this was our moment to reconnect and it was a disaster.  On the outside I was patient and understanding, speaking in a quiet tone.  Gave her meds to get her through, washed her face with a cold washcloth and snuggled on the couch.  On the inside I was angry that this was the first thing that happened as a reunited family.  I wanted hugs and excitement and I got yelling, pinching and self-injurious behavior.  I suppose to put a final good spin it, I can say that all calmed down as the meds kicked in and we were able to reinforce the good behavior with grocery shopping and pizza. It's been a quiet evening since.

The next five days will not be the kind of days I pray for - where autism does not play into our plans.  It's school vacation.  Can't even begin to put autism on the shelf.  It's five days of juggling work and child care.  It's five days of RJC asking me what her schedule will be when I really don't know.  It's five days of trying to think of things that will keep her amused and busy, that won't cost a zillion dollars, that she enjoys.  It's five days of never, ever forgetting that autism is in our lives. Five days that, experience tells me, will feel like five weeks months years. 

After that, though, I will look for those days where we just move through without too much of a thought as to how autism will play in our plans.  I will look forward to the lack of anxiety, the sheer joy of being with my girl.  And I will work to find a way to have more of those days.  Not because I deserve them - but because she does.

A Tale of Two Experiences

Today we had two vastly different experiences when we were with RJC.  The first was very negative.  The second, quite positive.  What made the difference?  Tolerance level, understanding, kindness, compassion, and common sense.  All the characteristics we hope we teach our children.  Apparently some people did not learn those lessons well.

Experience 1:
Went to the bagel store.  It's a store we've been to before.  RJC likes to get a small bottle of lemonade, then pours it into a cup with ice, puts a lid on it and drinks it with a straw.  The entire bottle fits in the cup.  All good.  So today we expected the same thing but the guy won't give me a large cup.  He said I had to pay for it.  I assume he misunderstands - I just want a cup with some ice so she can pour in her lemonade.  He does not misunderstand,  he simply refuses.  In truth, I was so shocked I didn't ask how much he wanted for a cup of ice.  So I try explaining.  He holds his ground.  This is one heck of an expensive plastic cup I guess, and he feels a need to protect it.  Or maybe he was protecing the ice.  No matter what, this man is not giving up his plastic cup with ice to my obviously challenged daughter.   I honestly have no idea what I said to the man.  I'm sure I was polite.  I'm sure I was trying to reason with him.  I asked for the Manager and...sigh...he was the Manager.  That plastic cup was like gold to him and he was not allowing my daughter to have it.  No ice for her in a big plastic cup.  True story.

Experience 2:
I am still seething from experience 1 and used some "not nice" language when explaining it to my husband.  Off we go to a store where we are going to buy some riding boots and a helmet for horseback riding.  Now I'm in a lousy mood and not really up for another problem, but I've told her we'd go so I feel obligated.  We find boots, no problem, but the helmet is tricky.  I don't know a thing about horseback riding and we want her to be safe so we have to ask for help.  In steps my new favorite person.  The most patient, kind, helpful person on the planet at that moment.  Now helping RJC put on anything new can be a challenge, but helping her put on something that needs to be a bit snug - now that's a real challenge.  One that this person is up to with good humor.  RJC would start to sort of wander away or wiggle around and she would wait her out a minute then get back to doing her thing.  In a fairly short time, we had a helmet that was both comfortable and safe.  Amazing.  Restored my faith in humankind.  True story.

I know that after twenty years of parenting RJC I should be used to the ignorance that comes our way.  I should be patient.  I should be understanding.  The truth is that I have become less patient and understanding.  It ticks me off and I'm not an easily "ticked off" kind of woman.  This sort of ugly behavior makes me want to scream.  Do I expect accomodations that are expensive?  Complicated?  Would put other people out?  Nope.  I completely understand that there are just some things she will simply need to deal with.  But really.  A cup of ice?  A plastic cup.  With ice in it.  Maybe that was why this bugged me so much.  The idea that this was such a simple act that would have made her life easier but he could not bring himself to do this one simple act to make her happy.  A cup of ice. 

I'll call the store on Monday in hopes of speaking to the owner.  What do I want?  An acknowledgement that this employee was insensitive.  A statement of empathy.  Reassurance that the employees of this business will be educated as to how to be sensitive to an individual's special needs.  That's what I want.  What will I get?  Stay tuned...

A Weekend Away

RJC was away once before this - for a week - and it did not go well.  It was about two and a half years ago and the camp we sent her to did not take good enough care of her.  Nothing horrible happened but it was a negative enough experience that she did not want to go again.  I also had a difficult time getting comfortable with trying again so we didn't.

The camp RJC went to this weekend was one with which we were familiar.  Her younger sister and one of our very trusted babysitters had worked there previously during the summer.  We got to know quite a few of the staff and we knew other families whose children had very positive experiences.  We would play around with the idea of sending her, then I'd back off.  Last summer I actually tried to sign her up for a two week session, but the camp had some concerns and preferred we start with a weekend.  Not to mention I was really late in sending in paperwork so there was no room anyway.  A few months ago I told our most wonderful case worker that we were considering a weekend and the next thing I knew he had signed her up.  Thus, a weekend away.

First and foremost, RJC had a very good weekend at camp.  Maybe a blip or two along the way but nothing horrible.  The staff had all positive things to say and they would welcome her back.  RJC seems to have mixed feelings about it.  Since she's been home she has said multiple times, "All done camp."  She has also said, "It was so much fun at camp."  My guess would be that while she was ok with being there she'd prefer the comfort and familiarity of home.  Well, I feel like that after four days of vacation as well, so I get it.  It doesn't worry me and we are planning to send her for another weekend in the spring.

The most amazing thing to me is what the weekend did for me and my hubby.  The first night she was away I was not at my best.  I was worried and didn't sleep well.  I called the camp early in the morning and they called back about an hour later.  Once I had heard she did ok (well, she was up "very early" and had packed but that doesn't sound terribly horrible) I was able to relax. 

Hubby and I went to synagogue.  Though I will sometimes meet him there with RJC for the last half an hour or so, it had been a long time since I went to services without having her with me.  It was actually so intense for me to be there with no worries about RJC that I found myself teary at times.  Really weird. 

We decided to go to an afternoon movie then out for dinner.  The movie we wanted to see was not around here so we ventured off to the area where we used to date.  It was pretty cool.  It was like we were dating again.  We didn't have to find a movie with lots of physical comedy or one that was rated G or PG.  We were free to make a choice based on our own preferences.  What a concept!  We sat in the middle of the theater with no worries about finding a seat up front so if RJC was self-talking nobody would be bothered, and we didn't need to worry about kicking the person in front of us.  It was a great movie that we watched in comfort.  And it felt like a date.

We went to dinner at a crowded restaurant.  We did not feel antsy and nervous while waiting.  Instead, we chatted with a very nice couple while waiting about half an hour to get our table.  We did not check the menu for chicken fingers.  We did not feel a need to rush through our meal.  We took our time, we ordered some wine.  And it felt like a date.

Though we sent RJC in the hopes she'd have a great experience and would gain a taste of independence, it turned out to be a great weekend for us.  It took some time to settle in to the idea that we were at home with no children.  The knowledge that we were on our own time schedule and that we could make our own choices for two days also took some time to settle in.  Yet once we got used to being on our own it was actually relaxing.  It was a time to reconnect.  To have conversations that were uninterrupted.  To laugh about stupid things.  To stop and pay attention to the quiet.  We really, really appreciated the quiet.

We picked up RJC today and things are back to normal.  Our normal anyway.  RJC is obsessing over the calendar for the week.  Endlessly it seems.  As I type I can hear Barney in the background.  We took her to one of her favorite pizza places tonight.  And it no longer feels like a date.  But it does feel like our life.  And so.  It's all good.

Still Looking.

Still looking for that right program.  Thought I should post an update since it's been a bit of time since I've updated.

I've seen quite a few adult programs over the past two months.  I have found that this experience is very difficult to blog about.  First, I would never want to say anything negative about a program since things I may find negative for my child, another parent will not. I would never want to be responsible for a parent not viewing a program due to my comments.  Our children are all different and have different needs.  Second, it's beyond emotional.  I cannot even begin to explain the stress and responsibility I feel about making this decision for my girl.  It equals many sleepless nights and many crazy days trying to juggle work and this hunt which has become like a full-time job.  It is not fun.  Just sayin'.

There are two programs that I would consider at this point.  Neither is making me jump up and down and that worries me.  I worry that I'm considering programs that have the "absence of bad" rather than looking for a great program.  That doesn't seem like the best method when going about this. It's not fair to RJC in the end.    

The big question...what to do, what to do?  The good thing is that I am not in this alone.  My husband is very involved and he wisely said something to the effect of  "No decision is final.  If something isn't good we can change it."  Well, yeah.  I just want to avoid the "if something isn't good" part from the start. 

Part of the problem is that all of these programs look great in writing and even sound good philosophically.  We have met many incredibly dedicated professionals for which I am grateful.  The day-to-day reality of the programs we are seeing is what makes me question things.  Down time, crowded space, clients that I cannot be able to envision RJC spending her day with, due to differences in age, time spent on being busy with activities that fill up time but do not seem to have a goal of developing a lifeskill.  Did I mention down time?  Ug. 

I honestly don't know how to make this decision.  I'm very glad we started this process early in the year.  Still gives us time.  What I REALLY wish was that there were tons of great programs out there and our decision would be difficult because there were so many great programs we didn't know which to choose.  Sigh.  In truth, this is not the problem.  That is a societal issue but apparently not one that will be solved any time shortly.  With all of the younger ones who will be in the adult system in the next five to ten years I sure hope it becomes a societal issue that people care about.  For now, it's just my personal problem.

So...still looking.

Todayland.

Lately I've been stuck in Tomorrowland.  Specifically, what will happen to RJC's world once June arrives?  Where will she spend her days?  Doing what and with whom?  Then I get that sick stomach feeling, can't sleep, and have visions of, well, nothing good.

Today, however, was one of those days where I not only recognized RJC's growth, but felt it.   I felt her making her wishes known.  I felt her presence.  It is not often that I manage to live in the present, especially when it comes to RJC.  Today was one of those special days.  It was all about living in Todayland.

It started off this morning when she announced her wish to go to synagogue.  We got ready and went for the last half hour of services.  She looked quite grown up in her black skirt and nice sweater.  Ok, we could have done without the sneakers but they were black and didn't look all that bad!  We arrived and she immediately went into the room with the toys and played a bit then we went and joined my hubby in the service.  She did a good job at being (relatively) quiet.  She sang along.  She was content.  There was lunch at synagogue and she waited patiently while others helped themselves.  When it was her turn she was quite independent in getting herself lunch.  She put her own cream cheese on her bagel and helped herself to some macaroni and cheese.  She used the correct utensil to eat, and used her napkin.  She threw out her garbage after lunch and sat with me while I chatted with some friends. 

Later in the day we went shopping.  Not one store, but two.  As this is the holiday season, both stores were quite crowded and we were not getting anything for her.  In Yesterdayland, this was risky business.  In Todayland, we walked in together with her arm wrapped in mine.  She saw some toys that caught her interest for a bit but didn't obsess over them.  She played with the CD player that customers can hear music on before they decide if they want to buy.  Again, it wasn't obsessive. She listened for a bit then moved on with me. 

We went to dinner.  She ordered for herself (ok, so I needed to do some translating).  She ate a good deal of her meal instead of playing with it.  There was no "Barney" talk (a victory indeed)!  My hubby and I chatted through dinner.  RJC looked like any other young gal in the restaurant.  Maybe even better behaved since she wasn't texting on a cell phone!  Lol!

When we came home she went right to her computer.  When it was time to light the Chanukah candles we called her to the kitchen.  We were skyping with her sister which she found interesting (if not a bit confusing) and she made an attempt to sing the prayers along with us.  She seemed to have an understanding that lighting the menorah was special and signficant.  She didn't make a move to blow out the candles.

A little later she showed off her most recent self-help skill and washed her own hair.  Since then she has been playing quietly on the computer and every once in a while I can hear her singing along.

There is something to be said for living in Todayland. 

Another Day, Another Program Visit

I went to visit another potential program for RJC a few days ago and am still trying to process all that I saw.  This was a large program with quite a few facets to it - a paid work program as well as a day program that is more recreationally based.  I had a meeting with the Directors of both programs first.  I've come to the conclusion that it's difficult to hear their words and then reconcile to what one actually sees in action.  For sure, whatever program RJC ends up in is one that I will have visited more than once.  It's just that overwhelming.

This particular program was going through a "transition" (I believe this is a code word for change in personnel who has a different philosophy than the previous person in this positition).  I did have a good feeling about both of the Directors I spoke with - they seemed committed and caring - so that was a bonus. 

Walking around the program I had feelings all over the spectrum (pun definitely intended.  Get it?)  On the one hand I saw staff who were engaged in whatever activity was going on and they were friendly and open to having conversation.  I did not see any out of control behaviors by staff or clients and the place was clean.  On the other hand, I did see clients who seemed less than enthused.  I also saw quite a few older clients and not many of them were engaged in social activities.  Some were quite involved in solitary activities.  I did not see any staff trying to engage those who were choosing not to participate.  How do I gauge the quality of a program such as this?  Trying to picture RJC there...I wasn't feeling it.  Yet I could not put my finger on the problem.

There was one moment where I saw something that I thought could be done differently and started to offer my opinion...with some detail and passion.  Oops.  It was not exactly negatively received but I can't say they said, "Wow, good point!  We should relook at this issue."  Hmmm...maybe this was part of the problem for me.  I'd like to think that any program RJC goes to is one that is open to suggestions.

All I know is...I didn't run out of there pulling out my hair, nor did I leave there feeling reassured and thinking that I found the place for RJC.  This is going to be an ongoing process I know, yet I keep hoping that something wonderful is just beyond the door I'm about to walk through.  So far...not quite the case.

More visits to come.  This is becoming my other full-time job.  Another day, another program visit.