Saturday, December 8, 2012

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. 

Wednesday, November 21, 2012

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. 

Thursday, November 8, 2012

Baby Step

I did it!

For those of you who know me well, one of my biggest issues with RJC is feeling comfortable when she is...well...not with me.  I am well aware that this is a problem, especially as she is becoming an adult and independence is a key component to adulthood.  Even if that is independence is limited, it should be encouraged.  See?  I know this.  The problem is in the execution.

Today however was a baby step forward.  I was talking to RJC's caseworker - one of my favorite people in the world - and mentioned that I'd like to sign her up for a "Weekend in the Country."   It's a program through a camp I am very familiar with since my younger one worked there one summer.  Well he was right on that and within half an hour she was signed up.  End of January.  Yikes. 

Nope I haven't mentioned this to RJC and won't until a few days before.  No sense in both of our anxiety levels rising.  Besides that, on a selfish note I'd rather avoid the constant scripting and obsessing that will come along with hearing the news of her exciting weekend.

This is tough stuff.  I have so much hope that it is a successful weekend and she enjoys herself enough to want to go back.  I hope she doesn't feel abandoned but rather feels like it's a big deal to be on her own.  It's a step toward independence for RJC and a leap of faith and trust for me.  Baby step indeed...but it's a step.

Wednesday, November 7, 2012

First Visit Thoughts

I was feeling like an emotional mess today and found myself wondering why since I tend to be pretty level headed and low maintenance.  Honest!  Lol.  Really?  I actually had to think about why I was so emotional today?  Not for long.  Today was my first visit to a possible program for RJC.  Pretty sure this would be the reason for the edgy emotions.  Until today, though, I did not realize how my personal issues would be magnified through this process.

It is incredibly difficult for me to recognize RJC as an adult.  As strange as this sounds I see her as a perpetual child as there is just nothing "adult" about my girl.  She is all about Barney the dinosaur, teddy bears, and Disney World.  She is twenty years old and has no interest (or knowledge of) boys, driving, texting, Facebook, etc.  We are still paying for babysitters because she is not safe alone.  Checking out these adult programs is uncomfortable for me because I feel like I am thrusting a defenseless child into an environment that does not fit her, yet because of an arbitrary number (her age) I have no choice. 

The other issue is that I know what I want for her but it is not necessarily what she would choose for herself.  Yikes.  First and foremost, I want her to be safe.  I also want her to have peers, to be with people she likes, to be exposed to fun and different activities, and to have opportunities to use her brain and do some thinking.  Here's the rub.  She would be perfectly content in a workshop environment where she goes in, sits and does the same thing day after day, week after week, month after month (you get the point) and she does not need to necessarily engage in any social interaction.  Honestly!  She'd be perfectly content!  I just can't let that happen.  It is my personal and deep belief that she needs to be a social being...to some extent...whether or not it is her preference.  She often does like to be with people, even if she does not seek out company or initiate contact.  It's just not a strong perference or need.  I feel like we (the collective "we" in this case being our family members, her teachers, various professionals, and family friends) have worked so hard and for so many years to get her to understand how to function as part of a group and how to enjoy some social time that I'm not willing to throw it away.  So ideally, she will have a program that combines the two.  Maybe not in one day.  Maybe she'll need to have a workshop setting and a different, more social setting.  But I just can't let go of having her make human connections.  The struggle of course is...am I putting my values on her?  Sigh.  I just do not know.

On the positive side, when I went to visit this program today I observed clients getting along, focused on what they were doing, and seemingly happy.  They were talking to each other and nobody was sitting around doing nothing.  It so happened I also recognized two of the clients and they would be fine "peers" for RJC to be around.  The woman who was giving us (I went with school personnel) the tour and answering our questions was very forthcoming and direct.  Traits that I like.  She did not stumble around for conversation, she was calm and organized.  More traits that I like.

It probably got a bit awkward when I ventured into the sensitive area that concerns me.  That is, I have an adult daughter who has no interest in boys, no concept of "stranger danger", no recognition of safety issues.  How did the program handle these sort of things?  (Translate - please keep my child physically safe and do not allow anyone to molest or abuse her).  Her response was reassuring.  She talked about how the setting was seen as a professional environment and there are clear behavioral expectations.  She and the staff are very aware of these issues and are aware that there were clients who could be interested in "negotiating relationships" (and yes, I thought that was a funny term but at least now I know the buzz words to use when bringing up this rather sensitive topic) and basically said the adults were on top of it.  Ok.  I felt like it was not lip service.  She seemed sincere.  More importantly, I was looking for any sign of a problem in this area while I was there and I must say I thought all interactions were appropriate. When I return - did I mention that is no way one visit will do it for me?- I will be looking carefully for any signs of a potential issue in this area.  It is my nightmare area.

So it's only visit one and I feel like this program has a lot of what we are looking for in a program.  I am not sure it would fulfill all of my hopes and dreams for my girl and I'm thinking I need to look more and see if this can become a component of a program for her.  It is also not a workshop setting, which is still what I think RJC would like (ok, I know she would) and it would be unfair to choose a program based on what I WISH she would like.  Sigh.  It is very overwhelming.

Oh.  And there is that annoying issue of the times of the program.  Seriously...it's 5 1/2 hours per day.  9 am - 2:30 pm.  Does anybody in the state of CT honestly believe that our most vulnerable and needy population only needs to have services available for 5 1/2 hours per day?  Especially when they are adults.  Most adults work 8 or 8 1/2 hour days.  Why are our adults deprived of the opportunity to be busy for a full day?  There are of course, other issues, like transportation.  But I digress.

Today was an interesting day and a good first step.  What I learned is that I need to get past the emotion of all of this and be able to make some objective decisions.  "Objective" is probably not my best character trait when it comes to either of my children.  This will be a challenge.

First visit thoughts shared.  Feedback welcomed.

Thursday, November 1, 2012

And So it Begins...For Real

We had our first transition meeting.  It was...not inspiring.  I left feeling a bit on the defeated side while oddly pumped up to change the world.  Yes I am aware that changing the world is not going to happen, but this type of meeting just gets me in that mind set.  It also made me teary.  Literally.  I hate when that happens.

Basically, what I found out at this meeting was what I had already heard from other people who have children in the adult system (but was hoping I had misunderstood).   At this time, RJC lives at home and we are planning for that to continue, so we are looking for an adult program that replaces her current school program.  She currently has programming for about ten hours per day.  Adult programs are about six hours per day.  A bus transports her to school.  Transportation may or may not be provided, depending on (mostly) her budget.  There is no educational component and there is nothing that she is "required" to do as she is seen as an adult who can make her own decisions.  In other words, if she refuses to participate in work or whatever activity she has scheduled, she does not "have to" participate.  Once she turns twenty-one the programs are set up for her as though she is chronologically twenty-one years old (with a few supports) and not developmentally a seven year old (or a two year old, or a twelve year old, depending on the situation). She currently receives speech therapy.  Speech therapy is not generally offered at an adult program (nor is Occupation Therapy or Physical Therapy).  There is currently a Board Certified Behavior Analyst who works with RJC.  We probably will not find a program that will have a BCBA.  In fact, from what I am hearing, the whole behavioral issue is going to be a big question mark.  One of those things that "varies from program to program." 

As to my questions about how these programs are overseen and by whom, how staff are trained and the minimum requirements for them to be hired, how the State of Ct decides to fund a program etc...those are questions I need to ask RJC's caseworker and the various programs when I visit. 

I don't think I'm asking for too much when I think about what I want for RJC.  I want her to be safe, to be happy, to be surrounded by people who understand and appreciate her.  I want her to be able to spend her time at work being challenged to her potential and using all of the skills we spent twenty one years developing (along with many, many professionals who went above and beyond to help her).  I want her to look forward to going to her program each day the way she looks forward to going to school.  I want her to have leisure time with peers her own age and an opportunity to try new things and go new places.

So, what now?  Well, I need to get answers to some very important questions (see paragraph 3).  I need to start looking at programs and figuring out what will work for her.  I need to figure out how to sew together a few programs together, if necessary, to be sure all of her needs are met.  Most painful to me, I believe I need to get some politicians on board - they need to understand the disconnect between school age years and adult programs and then they need to help fix that disconnect.

We are on our way.  It's only the start of November and I have about eight more months to get this all figured out for RJC.  Eight months.  Less than a year.  Yup.  I see another sleepless night coming.  And so it begins...for real.

Saturday, October 20, 2012

Slow but Forward Movement

Making forward movement.  Small forward movement, but movement nevertheless.  This week I took two baby steps toward RJC's adult future.

Baby step 1:  I set up a meeting with...well...everyone.  Our school system, her current Outplacement school and Department of Developmental Services.  Yep.  It is official.  I can no longer pretend to ignore the fact that she is not going to be able to stay in school and I took the plunge and made the call to get the ball rolling.  I am both pleased with myself and sick to my stomach.

Baby step 2:  For whatever reason, trying to get SSI for her has been a ridiculously slow process.  While I was just at the point of considering who I can call to get some help, she was approved.  Of course, it couldn't just be a simple process.  I received a letter that she was approved but that I needed to take her to the Social Security office in Hartford.  UG.  Really?  Smart me - I called to be sure this was a necessary step and lo and behold it was not!  The rep on the phone found the form they thought I needed to complete.  Thank goodness my need to avoid any potential issues with RJC pushed me to make a phone call. 

So there you have it.  I have made some forward movement.  Reading this over it is almost pathetic that I am sharing this somewhat proudly.  You'd assume as a responsible parent I'd be doing this stuff.  I assumed I'd leap right into it.  What I am finding is that there is a great deal of emotional stuff that goes along with my baby turning 21 and it makes me want to crawl into my bed and put the covers over my head. 

Forward movement is progress.  Progress is good.  So, I'm sharing.

Monday, October 8, 2012

A Community of Strangers

We are a community of strangers.  We do not know one another but we can recognize one another. 

This week we're vacationing at Disney World.  Yesterday we had a long, hot day and though we rested for a while in the afternoon, by the time the fireworks were over it was late and RJC was done.  We made our way through the crowd to the bus area where we waited for our bus to take us back to the resort.  RJC is not one for standing, so she was sitting on the cement.  The bus came rather quickly and the man in front of us helped her up.  I thought it was a nice gesture and thanked him.  Just my luck, by the time we boarded there were no seats.  Let the screaming begin.

All in all it was pretty much just two long screams then she plunked herself down on the floor of the bus.  The same man leaned over to me and asked "Are you ok?"  I smiled, said something like, "Yeah, she's just holding on by a string" and he replied "At least she's still holding on."  Again, I politely smiled.  I did think it was interesting that he didn't ask me if SHE was ok, since that's the usual question, but I was tired and mostly focused on keeping RJC in check.

The ride felt endless and I caught this man's eye again.  He nodded, I nodded.  Then as I was looking around to see where we were and hoping we were reaching our destination, I saw his son.  He was in the eight to ten year old range and was diagnosed with Down's Syndrome.

It all made sense.  Of course he helped her up.  It was instinctual.  Of course he asked if I was ok.  He'd been there.  He knows that "walking on egg shell" feeling when you're just praying silently that the screams stop there and don't explode into a full blown tantrum with a bus full of people. 

We are a community of strangers and we're there for each other.  Even when we don't realize it.

We made it with no other issues back to the resort and when we got off the bus we said our goodnights.  He went his way with his family, I went mine with RJC.  He probably did not give us another thought but I sure silently thanked him on our walk back. 

There is something about knowing that somebody "gets it" when you're in the middle of it.  There is something comforting about our community of strangers that helps us to plow on.  You don't need to have a child with specials needs to be in that community.  You just need to understand and be compassionate.  We need our community of strangers to make it through.  So let me say now to all of you who are part of this community - thank  you in advance for those times that you help me...or somebody else...get through those moments.  Thank YOU for being a part of our community of strangers.

Sunday, September 30, 2012

Like a Deer in Headlights

This is not good at all.  In fact, it's bad mommy behavior.  Yet I can't seem to get moving - it's like I'm a deer in headlights.  This is not my normal modus operandi.  When it come to RJC I am very good about facing things head on, fighting (what I call) the "good fight."  So why oh why is this so difficult?

I have received...let's say...more than one email from RJC's school transition person about scheduling site visits of day programs.  Her Case Worker has also asked me to call and schedule a PPT meeting (Planning and Placement Team) so we can discuss options for next year.  A friend has sent me contact information for somebody that I can use as a resource.  Have I done any of this?  That'd be a big ol' no.  I think about it.  I have good intentions.  And I panic. 

Now I am well aware that this is not useful behavior.  June 2013 is going to come whether I like it or not, and the adult system is looming just eight short months away.  The calendar stops for nobody.

I've spoken to parents who have children in the adult system and I am sorry to say that not one single one of them has said, "Oh no worries!  There is the greatest program my son/daughter is attending.  Let me give you the number!"  Nope.  I heard things like, "Well, we're trying a new program.  The first one (or two, or three) didn't really work out."  I've heard "There isn't always work to keep him/her busy."  I've heard "It's a short day.  The program is from 9-3."  I was also told that education is not part of the adult system.  Well, sure, I can ask a day program to provide an element of education if I really want to, but there are no actual licensed teachers in an adult day program and if RJC refuses to do the work then there's no obligation to find a way to motivate her to do it.  After all, she's an "adult."  Really?  Anyone else find some...oh, I don't know...irony here?

I am not feeling warm and fuzzy about this transition. 

After 17 years in the school system (she started at age 3) she is finally in a place that works for her.  For the last six years I've sent her off every morning and I do not worry about her safety or her happiness.  She spends the day with people I trust.  I know they care about her.  I know they understand how to teach her while allowing her to be who she is.  I also know that I am informed of what is going on every day - both the good stuff and the not so good stuff - and I am not concerned that they are hiding anything.  She comes home happy and tired because she has been stimulated and busy all day.  She gets exercise and she enjoys being around everyone in her school.  She has friends - not in the traditional sense of the word perhaps - but she is comfortable with her peers in her classroom.  That's a big thing in the autism world.

And for some reason this all ends at the chronological age of 21.  Never mind that developmentally she is not even close.  Let's think about this...her favorite show is still "Barney" and her choice of books when we are at the bookstore are fairy tales.  Mostly for the pictures.

Sigh.  I will be making the call to the school district tomorrow to have this meeting set up, then the search for the day program will begin in earnest.  Watch out though.  I'm digging into storage and putting on my fighter's gloves. It's been a great six years and I haven't needed to enter the ring in a long, long time.  I'm getting in the mindset, I'm hearing my theme song in my head (see my entry from 8/31/12) and I will no longer be that deer in the headlights.  It's me against...whoever gets in my way. 



Tuesday, September 18, 2012

Decisions. Oy.

Decisions can be difficult.  Decisions about my children can be beyond difficult.  Even worse, I never know if I made the right decision.  This recent Jewish holiday found me making decisions about both my children.

Child 1 decision:  The Jewish High Holy Days of Rosh Hashana and Yom Kippur (the Jewish New Year and the Day of Atonement) are always very complicated for me when it comes to RJC.  We love our synagogue community.  RJC is accepted and welcomed when we go to services during the year and she has the opportunity to participate in services as well.  These holidays, however, are a horse of a different color.  There are so many people.  Instead of a hundred or so we are talking multiples of a hundred.  People who are not used to seeing my girl, not used to hearing my girl, well...they're just not used to my girl.

Every year I struggle with what to do.  I could bring her to services.  She would have the opportunity to be part of the very large community that attends during the holidays.  She would see some familar faces.  She would recognize some of the tunes.  She would be a part of our community. 

On the other hand, she would also be apart from our community.  She would probably disturb others with her Barney self talk earning stares and possibly comments. She would probably be overwhelmed by the crowd, the perfume and cologne smells, the larger group of people, not being able to sit in her "regular" spot (during the holidays there are reserved seats for some and in order to sit in the front section we'd need to get there very early).

The other issue is a selfish one.  If I have RJC with me the opportunity for me to get anything out of the service is just about zip, zero, zilch.  As this is a service that requires concentration and contemplation, having RJC with me means my focus is on her.  On her alone.

So every year when the holidays fall on a school day I send her off to school and feel guilty.  Then I work it out in my head and feel ok about it.  Then I get to synagogue and see my friends who made the choice to bring their kids and I feel guilty.  Then I focus on the service and feel ok about it.  Then I start to think about RJC and feel guilty.  Well...you get the picture.  Every year.  So this year I made up my mind not to feel guilty.  It worked.  At times.  Still not sure this was the right decision.

Child 2 decision:  RJC's sister, NMC, just started college and happily I picked her and a friend up from school so we could spend the holiday together.  I get word that a swastika was found drawn in a building at her school.  Just as disturbing, there are students who consider this "free speech."  So what to do?  I'm not comfortable sending her back to a potentially volatile situation.  On the other hand, I am well aware that this is part of the world we live in and that she is no longer sheltered at a Jewish Day School.  Ug.

I spend a ton of time on the phone with the school.  I read the parent's list, I read the email sent from the school.  I have multiple conversations with NMC and her friend, trying to gauge their comfort level.  And now...a decision to make.  I think she should go back to school and that I should let the school handle the issue as they seem to have things under control from what I can tell by our conversations.  I am aware that this is an important issue for her to work through with her peers as well as on a personal level.  On the other hand her safety is by far the most important concern so perhaps this is not the correct decision.  I think she should stay home where I know she is safe.  What to do, what to do?  A decision needs to be made.

I drive the girls to school.  NMC walks me to the Security Office so I can have a face-to-face conversation and get some comfort level that this was the correct decision.  She has things to do so she kisses me goodbye and off she goes.  She seems happy to be back at school, her new home.  I have a conversation with Security, then a further phone conversation with a Residential Staff.  I make the decision to leave and I hope it's the right one.

This was a holiday of difficult decisions.  I'm not sure I did the right thing in either situation, but I know I thought them through carefully and as objectively as possible. 

Good practice for the months to come.

Saturday, September 8, 2012

Autism is not (always) poopy

I've said it so often that I've considered making it a bumper sticker or putting it on a tee shirt.  In fact, in the month of August I said it on practically a daily basis.  Autism is poopy.  Well I'm happy to report that today was the kind of the day that reminded me - autism is not (always) poopy.

It started as a thought.  The Bushnell Theater in Hartford, which is a professional theater in our area, is about to open their Broadway season with "Mary Poppins."  To get things started, they had a free event today with various activities related to Mary Poppins as well as a showing of the movie (the sing-along version, complete with subtitles for the songs so the crowd could sing along).  Historically, this type of event has not always gone well for us so hubby and I were weighing the pros and cons.  It was one of those days where I was feeling pretty energetic so I tossed caution to the wind and off we all went.

When we arrived, RJC immediately spotted quite a few kites which got her excited!  We stopped for a few minutes to watch a lady teach some dance steps.  RJC wasn't interested in participating but she happily sat down and watched for a while.  We moved on and could see where to get the kites so we stood in line for a while and RJC patiently waited, alternating between sitting and standing.  She got her kite and went to the table to draw a picture of a flower and put her name on her kite, then excitedly went off to fly it.  It was a perfect day for this - quite windy since it was just before a downpour.  She was laughing and so thrilled to being flying her kite.  Then came the drizzle.  The sky was getting darker, the wind was getting gustier, and it was obvious that the rain was about to come down full force.  We ran into the theater, RJC laughing all the way.  We sat down, watched people sort of aimlessly milling about so I took RJC for a walk and discovered they were letting people in to the theater.  Why not?  I checked with the hubby who was willing to give it a try.

We found great seats near the door (ok, it's been 20 years, we know not to push it) and though we had to wait about half an hour for the movie to start RJC happily sat scripting relatively quietly.  The movie started and she took my hand and gave me a kiss.  There are no words.  We sat holding hands throughout the entire movie.  She loved every moment.  Clapped along, made relevant comments, never once asked to leave.

Now I realize that this event was not targeting 20-year olds.  In fact, I'd guess most of the kids were in the 8 and under range (with most in the "and under" range).  The thing is, we couldn't do this stuff when she was 4, or 5, or 10, or 15 for that matter!   It took us 20 years.  The point is...we did it...and she loved it. 

I started to think about everything RJC has not had to deal with.  She never dealt with the social horrors of middle school or high school, the pressures of getting good grades, the concerns around college or boys.  While these are usually things I mourn as losses, today I celebrated my girl just where she is and for who she is.  I was teary thinking how difficult this would have been had she been the age of most of the kids who were there, and felt very proud to have had this experience today.  I was teary wishing my mom was around to enjoy and share in this great victory of ours since she always participated in these activities and was with us plenty of times when we had to make a rushed exit.  Mostly though, I was teary thinking how much I loved my girl and how sometimes, just sometimes...autism isn't poopy. 

Friday, August 31, 2012

Getting Ready

It so happens I heard an old song today that I never gave much thought to but it really struck home for whatever reason.  Nice melody too.  I think it's my new theme song as we enter the official year of transition on Tuesday.  Something tells me I'm going to have my hands full trying to get the right program for my girl. I've been there before.  Battle on.

http://www.lyricsmode.com/lyrics/a/atlanta_rhythm_section/do_it_or_die.html

DO IT OR DIE
Atlanta Rhythm Section

Don't let your troubles make you cry
Don't waste a moment wonderin' why
When ev'rything goes wrong
You have to go on
And do it or die
 
Do it or die now
Stand your ground
Don't let your bad breaks go gettin' you down
Even when times get rough
And you've had enough
You still gotta try
 
Do it no matter what the people say
They don't even know you
Die before you let them stand in your way
(Don't you know that)
You should know that
 
Life is a gamble all along
Winners or losers you keep rollin' on
So go on and roll the dice
You only live twice
So do it or die

Monday, August 27, 2012

Donna, and the Terrible, Horrible, No Good, Very Bad Day

The start of week three of vacation.  I have been known to say that Autism is poopy.  This would be an understatement today.  Today I was in the ring and got knocked out.  No doubt about it.

It started off fine.  RJC is still a bit swollen from her wisdom teeth surgery but she is in no pain - has not even needed Motrin.  I was working from home and I took a break in order to entertain her.  When she gets bored, trouble follows.  We went for lunch and got her nail polish changed to a beautiful bright red.  She was quite happy, though doing more self-talk than usual and louder than usual.

When we came home I went back to work and she was playing on her computer.  Then it started.  The screaming.  Not just a few screams here or there.  It was turning into a scream fest where one screech was louder than the next.  I went into her room to check on her and talked her down.  A few minutes later it starts again.  This time it sounds like an animal dying.  I check in on her and she loses it.  She is pinching and scratching me but even worse she is hitting her cheeks.  Now this concerns me.  I remind her, "No hitting!" and she takes off.  She's yelling full force then throws her body into our wall and goes right through it, taking down our doorbell with her.  I have lost track of how many walls she has destroyed but last time we fixed a bunch of these holes it cost us over a thousand dollars.  She's in a full frenzy now and goes right to my cell phone and throws it across the room.  I quickly realize the next possible target is my laptop so I take care of that immediately and put it away while keeping an eye out for anything else that may go flying.  All the while she is screaming at the top of her lungs.  She finally asks for a washcloth which is usually one of the ways she calms herself and I take this as a good sign.  I wet the washcloth and hand it to her and she whips it at me full force.  Ok, try again.  This time I am wiping her face gently and she is pinching me.  We are not in a good space and in truth, my heart is pounding and I am doing my own self talk, "It's not her fault.  It's not her fault.  It's not her fault."  I go for the Ativan which she takes willingly and that seems to stop her screaming pattern since she needs to swallow.  Eventually, she winds down and asks to "lie down on the couch with mommy."

I was definitely not in any mood to snuggle.  I was angry.  What could I do though?  She was calming down and I wanted to encourage that so we went to hang out on the couch together.  She put her head on my lap and I read the paper.  I was still pretty angry.  She was just hanging out on the couch when she started.  "I'm sorry mommy."  Really?  I was not ready to hear this.  I was angry and my hand hurt where she pinched and scratched me.  But what could I do?  It didn't matter how I felt.  I rubbed her forehead gently.  As we sat like that I could feel myself feeling so sorry for her.  She just has no "off" button. 

Here it is, hours later, and it still bothers me.  This is where my fear of the future rears its ugly head.  If she were to do this in a group home, what would happen?  Would they call the police?  A restraint?  Would somebody lose their patience and hurt her, be it by accident or out of anger?  How will she hold a steady job?  Participate in a day program?  These are the issues that keep me up at night.  Almost every night lately, in fact.

I am older and more tired than I was just a few years ago.  Yet somehow I need to make it all come together and work this out for my girl.  Over this year I'll be researching options for day programs and will need to remember to focus on the staff.  How do they train their staff?  What do they do if a client becomes aggressive?  What is the turnover rate of their staff?  I'll need to talk to parents whose children are already in these programs to hear the pros and cons of their experience.  I'm thinking this will be its own full-time job, but the most important one I will ever have.  And now...I'm going to try to go to sleep and I have no doubt...I will fail.

Saturday, August 25, 2012

Bye Bye Wisdom Teeth

The night before (preparation):  RJC was not allowed to eat after midnight, and could not have anything to drink after 3 am.  We had a very late dinner and kept her up until 10:30 pm in the hopes that she would sleep through the night.  Once she went to sleep we poured out all of the pitchers of water and the orange juice.  We hid the bags of popcorn as well as the straws (it's a big no-no to use straws after this surgery).  I went to bed at midnight and set my alarm to 3 am so that I would be awake if she happens to get up and want something to drink.  I couldn't quite figure out how I'd stop her but the loose plan in my head was to toss her in the car and drive around for three hours if necessary.  Luckily, she slept quite well and as soon as she woke up we told her we were leaving - and we did - pajamas and all.  She grabbed her favorite bear (Buddy), I gave her Ativan to help her relax and we were off to the hospital.

The arrival:  We arrived and went to the assigned room where we found other families who had woken up at a ridiculously early hour to get their kids to the hospital.  RJC was well behaved while we waited for our intake.  Within half an hour or so we were called over to do the admission paperwork.  We answered the same zillion questions we had answered previously but in truth, it felt good to know they triple and quadruple check things like allergic reactions and illnesses.  Once finished, I requested a DVD player which was brought up within minutes.  I also made sure there were clear notes about how things were supposed to go and was reassured that everything was in place.

Preop:  We were called to follow a lady to the preop area.  She brought us to our curtained space and was very helpful in setting up RJC to be able to continue watching her DVDs.  So far, so good.  RJC was happy and quiet. Hooray for Ativan.  It didn't knock her out but it definitely took the edge off.  We were there for quite a while, watching this cute little kid play on the floor and observing the hospital staff deal with a younger teen who was clearly telling them that she was not going to take the medication or have her surgery.  I felt for her.  The staff did a great job though, and eventually their patience led their patient to cooperating (Watching this interaction was really a large part of my morning).  The dental surgeon came by to reassure us that this was very routine.  Then came the important guy - the anesthesiologist. 

Knocking her out:  The anesthesiologist was young, maybe too young for my comfort level.  I explained firmly my concerns and wanted to be sure there was a plan for how he was going to knock her out.  We talked for quite a while about the "dart" (the shot that would only takes minutes to get her in a state where he could anesthetize her) and he was honest - it was "not pretty" and he didn't like using it but he understood that there were times that this was the only way.  I was pleased that though this was not his choice of method, (especially having seen it used on RJC before - though that time it was not planned and was done in sheer desperation) he had a clear understanding that in some cases this was truly the only way to do so safely.  I asked if there was a private room to move RJC where this could be done and they found one immediately.  Again, they set her up with her DVD player and the plan was that he would sneak in, jab her, and walk out.  Yup...that was the plan.  The problem with the plan was twofold.  First, RJC is hypersensitive to her surroundings and immediately felt that something was up.  Second, it was a pretty small room and there were four or five people involved.  It didn't go as planned.  There was alot of screaming and I got out of the way quickly since I really did not want to be the one who got the shot. RJC slapped him pretty darn hard - the sound was seriously loud.  One guy lost his badge which was later found on RJC's bed.  She yanked it right off of his neck.  In the end, the shot was given and within minutes she was looking at her hands funny and slurring her words.  I really, really did not like this.  It's very scary to see your child this way. They asked me to wear the hairnet and gown and go with her into the OR so she would feel less anxious with me there.  Once they started the mask, I left...a little teary and feeling really bad about my part in this whole ordeal.  Yes, in my head I knew this was best and was in fact, the only way.  My heart told me different.

Postop:  We went to the waiting room and the coolest thing ever - they gave us a number assigned to RJC so we could keep track of her progress.  There are different colors shown on a screen by her name that allowed us to know when she was in the OR and when she was moved to the Recovery Room.  It was not long at all before the surgeon came out to tell us he was done, gave us some instructions, asked if we had any questions, then suggested we head out quickly to the Recovery Room since she was waking up. 

I had spoken to the anesthesiologist about my concerns in recovery.  She would not tolerate the gauze in her mouth so the bleeding had to be under control and the gauze out before they started to wake her up.  Previous experience in watching RJC coming out of anesthesia was that she became scared by the needles and machines and would stand on the stretcher completely freaked out.  It was incredibly dangerous as then a bunch of staff would wrestle her down, putting her (and themselves) at risk for injury.  We explained that it'd be best for all of the bells and whistles to be off of her before she noticed.  He gave her some intravenous Ativan and they did an amazing job at hiding her IV under a big bandage so she didn't notice the needle.  They also had some of the monitors on her back so she couldn't see them.  Watching her come out of the anesthesia was creepy.  Her words were slurred and she could not see well enough to maneuver her DVD player nor could she control her hand. Without getting terribly graphic, the anesthesia also made her sick to her stomach and there was still bleeding going on so...yeah. 

The anesthesiologist came back and checked on her a few times.  He was excellent at reassuring us that she was fine and we had a conversation about the meds for her aftercare.  He told us we could stay until we were comfortable taking her home.  One of the nurses did attempt to prod us into leaving but we were having none of it.  We were staying until she was able to speak clearly and maneuver her DVD.  At one point she said, "Give a hug" very quietly.  But I heard her.  I leaned over and we were wrapped together for quite a while.  I don't know who needed that more - me or her.  She fell asleep again and when she woke up she seemed more alert so we decided we'd bring her home.

Home:  I won't go into the details of the home trip.  Suffice to say, still sick to her stomach and not really strong enough to walk up the steps on her own.  Not fun.  We brought her straight to her room and she drifted off holding my arm. I was so tired but just could not sleep.  Instead, I did a bit of texting (a great feat since I had one arm tied up) and watched her breathe.  We were diligent in giving her the pain medication as well as the anti-swelling med.  She was not intersted in food but did have some water.  Eventually, she fell asleep for the night - with me in her bed.  It wasn't an good night's sleep for me.

Day one of recovery: A disasterous morning.  It started when she found out she could not have popcorn.  For ten days.  From there it was all downhill. Screaming and rubbing her arms and the worst part - she slapped her face.  Ug.  We finally got desperate and thought if we could get her outside for a while she'd be distracted, so we decided to go to ride the trolleys.  We were just about there when it became obvious that she was still agitated so we turned around and went back home for Ativan.  Then we were off the trolleys again.  It was probably a better idea than staying home but it was definitely not relaxing.  She was scripting like crazy.  There was one real highlight of the day though.  It was obvious that she was not in much pain!  She was eating (pancakes - no syrup) and mac and cheese.  I decided to change from the heavy duty pain med to Motrin and see if that would still keep the pain in check and as far as I could tell, it did.  She has never complained in fact, and as the day went on she became more settled on this idea of no popcorn.  We went over the calendar a zillion times which was probably helpful as well.  In truth we are dealing with two issues.  Not only the postop week coming up but the fact that she still does not have school.  Dealing with this long unstructured time combined with this wisdom teeth ordeal has really added to her overall stress...and mine.

So here we are, the end of the first day postop.  She seems to be much more settled, though very tired.  In fact, at 8:30 pm she asked to go to sleep which is unheard of!  She's a bit swollen still and is very bothered by the feel of the area by her teeth (well, more technically, by the holes where her teeth used to be) but she is asking to go miniature golfing tomorrow and we will accomodate her.  For me, these two days have been exhausting.  The worry alone about all of the things that could go wrong is exhausting.  The preplanning was well worth the tons of phone calls and had that not been done, I cannot even imagine how we would have done this.  All is all, it could have been a much worse experience.  With that, I am looking toward my own bed.  A good night's sleep would be helpful to my mental health.  I'm quite sure.

Wednesday, August 22, 2012

Wisdom teeth worries...

As my gal gets older we hit all sorts of new challenges...first there was puberty (it's own book of stories, really) and now we've come to the wisdom teeth issue.  Her extraction is scheduled for Friday, just two days away, and already my anxiety is at full throttle.

We tried the procedure in the office.  Yes, I was well aware that this was not going to work but apparently insurance companies do not like to pay for procedures to occur in the hospital that can occur in an office.  Let's just say that when she shot up from the chair and ran down the hall screaming "NOOOOO" we knew our next step would be an outpatient procedure.  Thanks to a wonderful fellow autism mom, I was able to get her into the local Children's Hospital here even though she is twenty and technically an adult.  That's the good news.

There are challenges. 

We have the "Before-the Procedure-Challenges."  She cannot eat after midnight or drink clear fluids once she is four hours from the procedure.  Since RJC is not one of those all night sleepers it means taking her out on Thursday night and staying up late in the hopes that she'll sleep until morning and I will not have to fight with her when she wants a snack at 2 am. 

Then we have the "Day-of-Procedure-Challenges."  First, she is not an easy girl to knock out.  The little drink they give her doesn't affect her in the slightest.  Of course I tell them this at the hospital but they insist they know better and give it to her anyway.  When this doesn't work, they try to get her to walk with them to the OR so they can put the mask on.  Again, not happening.  Next step is the idea of putting in an IV.  That's what previously caused her to run down the hall screaming when we were at the office so...no.  Last time we had a procedure done we went through all of these options (again, I tried to tell them...) and were holding up the OR schedule by about an hour and a half.  Finally a guy came running across the room, totally took her by surprise and jabbed her with a needle.  Creepy when her eyes started to roll back and she was moving in slow motion but effective.  Looks like this is the plan this time as well and I'm not looking forward to it.  I can only hope that they will forgo all of the other options so as not to prolong the inevitable.  Second, RJC does not come out of anesthesia well.  She basically freaks out.  Stands on the little stretcher and screams, ripping at all of the stuff attached to her.  Last time it took six people to get her back to lying down safely and in order to do that they grudgingly took out all of the various monitors and needles attached.  She will also not be the least cooperative if she wakes up with gauze in her mouth.  I'm working with the hospital staff now to avoid these issues, but so far there is no actual plan in place.  We will talk about it when we get there, I suppose, but I'd be so much more happy if we could make a plan.  Now.  As in...not Friday.  Sigh.

Still to go, the "Many-Days-After-the-Procedure-Challenges."  Her most favorite go-to food?  Popcorn.  The one specifically mentioned food she cannot have for ten days?  Popcorn.  Feel my pain, here?  She should also rinse with salt water (um...yeah) and hold an ice pack on her mouth (sensory issues abound in my gal).  No straws can be used for the first few days.  We can probably get around that one but she won't be happy.  There are lots more "no" things on the list that will be a problem:  nothing hot the first day (soup - an everyday food), nothing acidic the first few days (OJ - another everyday food, mutliple times a day) and nothing crunchy for a while (bye bye crackers). 

I'm working hard to see if we can get something to ease her anxiety and keep her sleepy the first two days.  Not that I'm a fan of a medicated child, but in this situation I think it's best for her to be able to sleep alot the first few days.  She will not do this on her own.  We've used valium and ativan in the past for other situations though they barely touch her, especially when her adrenaline kicks in.  Telling her to sit and relax is a foreign concept.  I'm still working on this and I have two days.  The oral surgeon doesn't want to prescribe anything like this because they don't know her.  Same with the hospital staff.  So I'm working through our pedicatrician.  Fingers crossed.

RJC does not know she's going into the hospital.  She would obsess and her anxiety would go through the roof.  I have been telling her the story of her previous times there so she is remembering some of her previous experiences.  Interestingly, she has wonderful memories of her previous times there and is always asking to go back.  I'm hoping that Friday morning she'll feel the same way.  In the meantime, I am up in the middle of the night trying to picture this being successful.  There are so many steps along the way where I need other people to understand that RJC is...well...different.  Not just different from a typical twenty year old but different from many kids on the spectrum.  I have found that often medical professionals lump all kids on the spectrum in a category with no concept of the idea that it is called a spectrum for a reason.  I then need these professionals to work with me to help them work with her (did you follow that)?.  That takes a special type of "professional" since often the whole "work with the mom" thing is not what comes naturally.

So...the countdown to Friday begins.  I know that if we can just get through the first few days we should be ok.  I chose this date to do the extraction because it gives her time to heal before school starts.  Please don't send me your horror stories, but any words of encouragement or success stories are welcome.  Make that...needed.

Saturday, August 18, 2012

Week 1 - Two More Weeks to Go

So some genius decided that over three weeks off from school for some of the most needy kids in the state of Ct was a good idea.  Um...really?  Now I don't know.  Maybe there is some contractual issue I am unaware of but it's an incredibly horrible idea on so many levels.  I've been curious about who figures out the schedule and what their thinking is behind it, because, well, it stinks.

Reason 1:  Scripting.  Scripting and stimming go through the roof.  For my gal, three weeks off means that she is spending a great deal more of her time with her purple dinosaur friend.  Other than the fact that it starts to grate on my nerves to hear the same tiny portion of her CD over and over and over again.  Let's imagine what will happen when school resumes.  Scripting much?  Scripting tends to be a problem during the school year, but come September her scripting is over the top. 

Reason 2:  Obsessing.  The school environment is inherently more structured than the home environment.  This means that she needs to find a way to cram structure into her home life.  How?  With endless lists and calendar conversations.  Not once a day.  Not twice a day.  Endless.  Heaven forbid we need to change the schedule we wrote out five times in the morning.  We cannot leave the house until we review exactly where we are going, when we are coming home, and in what order we are doing things...and it all needs to be written down.

Reason 3:  Expense.  Imagine that for twenty years you cannot leave your child unsupervised.  Ever.  Not for five minutes and not with the typical young teen willing to watch your child.  Now imagine you have a full-time job.  That means that during these three weeks of school vacation you pay a professional and/or well trained, caring person to supervise and amuse your child for approximately 45 hours per week (40 hour work week plus an hour a day for traveling to and from work) for 15 days.  You also need to send money with your child for entertainment and food.  It's pricey.  So instead of covering the 135 hours for three weeks, you take vacation time and get creative so you can manage a 40 hour work week...assuming you have that type of job.  Stressed much? 

[As a side note, I should mention that the one huge bonus for our family is that over the years we have developed relationships with people who love to spend time with RJC and who go out of their way to make themselves available to watch her for some of these hours.  They also take her places that we don't and she loves being with them. In that way, we are luckier than many families].

Reason 4:  Regression.  There are areas in school that have been a challenge to RJC.  The teachers and paras work very hard to get her to a place where those challenges are less and she is able to get through the day with significantly less difficult behaviors.  She now has three weeks away from having to navigate through the difficult areas.  It is quite normal for those difficult behaviors to show their ugly faces in September because she's been away too long.

Reason 5:  Attachment.  When RJC is home with me, she is content.  She does her own thing.  I revolve my day around her requests.  She wants to go to the movies?  Off we go.  She wants to go get ice cream?  We're there.  After all, there is no sense in her sitting around all day and on top of that she is using words to communicate so I reinforce this wonderful behavior.  If she'd like to go someplace and she asks nicely, I accomodate her.  On top of that, I understand RJC.  She has a funny way of saying things - often scripting and using that scripting as a way to communicate.  Her syntax is off but I understand.  Spending time with me is easy.  She becomes attached.  In September when she returns to school a great deal of her "conversation" with others will revolve around "Mommy will come at ?"  The biggest irony here is that I have had more than one professional point out the importance of her becoming independent from me.  Um...three weeks off from school.  Not so much independence.

So how's it going you?  Here are the positives:
  • Week one is over. 
  • We have not had any big tantrums so my walls are intact. 
  • She has done fairly well at adjusting to having people take her out and about for a few hours per day. 
The problems? 
  • I have seen more frustration from her than usual which leads to screaming and scripting.  She is obsessed with watching the purple dinosaur on YouTube. 
  • She is attached to my hip when we're home, showing a preference to hang out wherever I am than being elsewhere. 
  • It is difficult trying to figure out how to best cover all of my hours of work and how to coordinate hours of RJC coverage.I literally have nightmares about my leaving for work and forgetting to wait for the sitter.  
  • Fitting in the day to day life stuff...not very easy.  If hubby wants an actual meal he generally needs to be the chef.  Clean clothes?  They are in the basket...wrinkled.

All of this leads me back to:  So some genius decided that over three weeks off from school for some of the most needy kids in the state of Ct was a good idea.  Um...really?   Not. So. Much.

Sunday, August 12, 2012

The Public School Years - The VERY short version

We had a diagnosis and we received recommendations for treatment in the promised report which were very specific and detailed.  The most important recommendation was for her to have an ABA program - Applied Behavior Analysis.  In a nutshell, ABA is a way of teaching that breaks large tasks into teaching small skills, and has a system of positive reinforcement along with taking data so it is clear when a skill has been mastered.  This was the first time I felt there was a clear way to teach RJC and it made logical sense to me.  In preschool, she was in a "play based program" and when I asked if RJC doesn't "play" how could a play based program be effective, I received the standard "this is what we do and it works" sort of answer.  I was not seeing it work for RJC and was thrilled to find there was another way of teaching that would be effective.  The problem now was how to get the school system on board then how to find somebody who could run an ABA program as well as train the school personnel. 

At this same time, I had already seen a home ABA program in action, and knew in my heart of hearts that this would open up her world.  I had given the school this report and they were aware of ABA but it was not widespread in our state at this time.  Somebody thought there was a program at a neighboring school system and we made an appointment to see it.  I went with somebody from our school to visit, and it looked much like the home program I had seen.  At this school their students were in an ABA program for half an hour each day.  We were leaving this school when the person I was with said that she thought we could implement this for RJC.  I was thrilled but said that the one change we would need to make is that her program would need to be five hours.  "Five hours a week...we can definitely make that happen" she said.  "Um...I mean five hours a day.  Then I can work at home with her as well and we could get close to forty hours a week of an intensive program."  The poor lady literally fell into a nearby chair.  She sort of weakly said, "We can look into that."  I however, was practically dancing out of the school as I felt we were on our way.

No big change comes quickly or easily however.  To the school's credit, they worked incredibly hard on a daily basis to try to find somebody who could run her ABA program and who could train the teachers (and me) as well.  Finally, a call came from Rutgers University.  They were willing to have somebody oversee her program and come train school personnel.  He would come to CT from NJ every six weeks or so, and would be available by phone and email as problems came up in between.  While this would certainly not be considered ideal in today's world, it was like the heavens had opened up for us.  Looking back, I was probably too self involved and stressed to appreciate the hard work that the school put into finding somebody to do this (and I iwll never, ever forget the woman who pulled this all together for us).  In reality, this moment was a life changer not only for RJC but for our family...we just did not know how much so yet.

Our Rutgers consultant came to CT and gave us all some training.  I remember two things about this time.  First, RJC had no clue what was going on.  Quite suddenly there were demands put on her that she couldn't grasp and she was struggling to understand what we wanted her to do.  What were they trying to teach?  "Come here."  That was it.  We wanted to say those two words and have her walk to us and sit down in a chair.  This was an important skill to have so we didn't need to chase her around the room trying to wrestle her into a chair so we could start her ABA program.  Trying to teach her what those words meant was torturous.  She had no clue.  I was hiding behind bookshelves watching the consultant with her, and she was upset and crying, and I was upset because she was upset.  They stopped for a break and the Rutgers consultant came over and started to say, "So that's going quite well" when he realized I was sobbing and the poor guy was trying to explain that really, once she gets it she'll be fine and she'll be able to learn all sorts of things.  I was thinking "What have we done?  At least she was happy in her classroom even if the learning thing wasn't really happening."  The second thing I remember about this visit is that I asked him what he thought about her future - would she ever be able to talk or communicate effectively.  He replied with complete confidence that he thought she would be the type of child who was very visual and would work great at some point with a written lists of instructions.  I took it in.  I thought he was crazy.  How was she going to learn to read if she couldn't understand what we were saying to her verbally?  I really thought I had made a big mistake in wanting to implement this ABA program.  Luckily...I kept that thought to myself.

It was an amazing time.  They had no room in the school for her to have a room alone to work in, so school personnel set up space in a ladies room that wasn't used.  It was already April so they only had to do this for a few months.  She did catch on to "Come here" followed by "Do this" (an imitating program).  This was the basis for learning to come...and it did indeed come.  Through ABA she was able to learn all her letters - uppercase and lowercase - and truly miracles of miracles - words.  Granted, we are not talking sentences.  We are literally talking words.  But the words came.  The school personnel were so invested and again, looking back, I did not realize how truly lucky we were.  They went so far and above what they needed to do in order to make this not only a "good" ABA program but an excellent one.  Everyone chipped in ideas, spent money on reinforcers (and probably their own money out of pocket) and eventually set up a room with a one-way mirror for observation.  In all of our school years, I remember this as a time where we were truly all working for the benefit of RJC - no egos involved.  As parents we were invited to trainings and our questions and thoughts were totally accepted and encouraged.  We could see RJC's progress both on paper since the data was strictly kept, but also in our day-to-day lives.  How cool is it to have your child say "cookie" for the first time instead of screaming on the floor because  you have no clue what she wanted?  Even better...she understood "mommy" and "daddy."  We were people with an official label.  Beyond cool, actually.

Lots happened over the elementary school  years.  ABA was becoming more widespread and a parent group was started to support parents who had ABA programs (I was eventually asked to join the Board of Directors and continue to be part of the Board today).  A consultant actually moved into the area so we now had somebody who came on a weekly basis, and during a crisis on a daily basis.  Funny story about that change of consultant actually...wish I had time to share it.  In any case, over the elementary school years we watched as RJC's life changed and our family's life changed.  We used ABA techniques to potty train (talk about life changing), walk without bolting (yes, another like changing moment - we could take her to the grocery store), and to sit in a restaurant without needing to be crammed into a corner of a booth or shoved into a highchair well past the highchair age days.  Her language skills were improving and though scripting from Barney was and still is, a huge part of her communication pattern, it's verbal and makes sense.  She learned how to spell (she's probably the better speller in the house since that really is a visual learner), how to brush her teeth, how to take turns...so many lifeskills were taught in those years through ABA.  Most importantly, she learned to generalize these skills so she was no longer working 1:1 by herself, but could take part in a classroom.  She was never able to catch up to her peers academically, but she could socialize(ish) and work on art projects or go to the gym with typical students.  She had one of the best teachers I've ever been lucky enough to have for RJC during those elementary school years, who was willing to work with and take suggestions from the ABA consultant.  She also had amSpeech and Language teacher who was willing to learn new techniques to best be able to help her communicate.  Super important during this time were the paraprofessionals who worked with her on a 1:1 basis.  We were sooooo lucky that year after year, from preschool through fifth grade, she consistently  had people working with her who learned ABA, followed through with all that needed to be done and truly cared about her at all levels. 

Middle school.  Ok, I just can't go there.  Suffice to say we call the one year she was in middle school "The Year From Hell."  It pretty much says it all. It was the year she started to literally go through our walls.  It was the only year we felt a need to try medication (big, big disaster for her though I am well aware it is excellent for others).  We tried so hard to get her outplaced to a school we knew would work for her, but outplacing students costs money to the school system.  I personally always felt there were ego issues involved in the decision to keep her in the school system as well.  Then came THE day.  I was driving my mother-in-law to New Haven for a luncheon where she was going to be the honored guest.  It was a big deal and I was so happy to be going with her.  I received a call from hubby that there was problem at the school with RJC and they called the police.  As in 9-1-1.  This was a problem.  I couldn't abandon my plans with my mother-in-law, not to mention that we were an hour away so turning around would not accomplish anything.  I gave my husband a pep talk and told him not to let anybody take her anywhere.  I even promised to bail him out if he got arrested for interfering (what can I say...I say stupid things in emergency situations).  He kept me posted by phone and while I don't think I ever got the entire true story of what happened, two wonderful things did happen.  Wonderful thing one: she had calmed down enough so that the police did not need to enter the building.  I have heard since then that her coach from Special Olympics was very instrumental in getting things under control, but I've never been told the exact details of that day.  Not that I didn't try to get them, but that's a whole other issue.  Wonderful thing two:   she started in her outplacment approximately four days later.  Thought it took months for the outplacment school to get her back to where she was able to learn, they did it.  We've had an amazing ride ever since in terms of her education.

So...since that day she's been going to the same outplacement school and in terms of her education we hit gold.  Truly.  There is nothing better than sending your child to school knowing she is both safe and learning.  She goes out in the community for both work opportunities (very basic work) as well as social opportunities.  The entire school is set up for her to be as independent as possible.  It's like a different world. 

And now...we only have one more year in this environment and then...well..I wish I knew.  I'll share our experiences as they happen - so stay tuned with this blog!

Tuesday, August 7, 2012

The Diagnosis

I thought it'd be easy.  After all, if somebody has a heart problem they go to a heart specialist.  It made perfect sense to me, then, that we needed to go to an autism specialist.  It was not that easy. 

First we need to actually find a specialist.  I checked the phone book.  Nothing.  I checked with our pediatrician.  She thought there was some group at Newington Children's Hospital so I called...there was a nine month to one year waiting list.  I went back to the school and asked for a list of professionals who could help us and received a two page list!  Joy!  I started at the top and thought it'd be great to interview some professionals and figure out which one would be a good fit for our needs. The calls went something like this:

Me:  "Hi.  I'm the parent of a child who may have autism.  Can you help me?  I'm looking for a definite diagnosis as well as a plan for what we need to do to help her."

Professional 1 (after asking a few questions):  "It sounds like it's just a problem with her neurons.  Give it some time and they'll all start working fine.  I wouldn't worry."

Professional 2 (excitedly) :  "Autism?  Cool!  I'd love to see a kid with autism!"

Professional 3:  "You can send me the reports you have and I'll write you a report so you'll have all the information in one place."

And so it went.  In the meantime, I was reading.  I read one book that was written by an Occupational Therapist.  It was quite technical.  When I finished it I told my husband that I couldn't figure out much but it seemed like we just needed to buy her a swing.  Yeah.  Once I said it out loud it just didn't sound right. 

Finally, I went back to the school and some kind soul pointed me in the direction of an actual autism specialist.  I made a call and by some incredible stroke of luck I was able to get an appointment.  Interestingly, the group of professionals from Newington Children's Children Hospital had broken up so there was no long waiting list.  The hitch?  It was $1200 for the evaluation which was not easily accessible to us...it was 1995 after all.  Now I was on a mission. 

I called our insurance company who told me there was no reason to see an autism specialist.  There were child psychologists that they would cover.  It was finally agreed upon that we would take RJC to the insurance company's social worker as a "first step."  I figured there was time before the appointment I had already made and if this would help get the evaluation paid for I'd jump through a few hoops.  I sent this social worker all the paperwork and made an appointment.  When we sat down, she told me quite happily that RJC was probably not autistic because she was a girl and didn't seem to be mentally retarded.  She took down her big ol' diagnosis book and showed me that 75% of those diagnosed are boys, and most have low IQs.  I asked if it was possible that she fell into the 25% that were girls (duh) and pointed out that we did not know her IQ.  She sighed and grudgingly agreed that she could, maybe, possibly be autistic.  She agreed to send us on to the next step - the insurance company's Child Psychologist.

If I detailed all of the ridiculousness about that appointment it'd be a novel in and of itself.  Suffice to say that RJC took one look at the tiny room and this large stranger and shimmied up on the top of his file cabinet...and perched.  That was the better part of the appointment.  He told me we just needed to give her Ritalin "to make our lives easier" and there really wasn't much to be done anyway.  I was polite and pointed out that she was all of three years old and we weren't really looking for medication.  Just wanted to get her to an autism specialist and would he please put in the referral.  He refused.  He said there was no point.  It did not seem to matter what I said - he refused.  I got RJC down from the file cabinet and we left.

The calls began.  Little did I know that this would just be the beginning of my phone call advocacy!  I believe that I finally just wore them down. Without getting into detail, the end result of my many phone calls and pleadings was that the school would pay for half of the evaluation and our medical insurance would pay for the other half.  RJC was three and a half years old at this point.  It had taken us a year and a half just to get to the point where we could meet with a professional who could not only give us a diagnosis but hopefully...a plan.

The day of the evaluation I thought it'd be a great relief to have an actual diagnosis.  On a completely selfish note I was worried about my parenting skills.  More accurately, what appeared to be a lack of parenting skills. More importantly, though, I wanted a plan.  I wanted to know what I needed to do in order to be able to communicate with my girl.  It was so frustrating on a day-to-day basis to know she wanted something, or felt something, but could not tell us.  I imagined that as frustrated as we were, her frustration was much more than ours, and that was very painful to us.  We also needed to have lives that did not include hourly tantrums.  Getting through a day was difficult and exhausting.  Activities that other families did with ease were an incredible challenge to us.  Visiting friends and family was really not an option as her behavior was so out of control we were always worried about broken toys or, worse, broken expensive knick knacks!  The evaluation was long and I was surprised and pleased that RJC was relatively cooperative. Near the end of the third hour or so, the specialist called us over and told us that he would be writing a comprehensive report with an autism diagnosis and that this report would include steps we should take for treatment. 

Wow.  Finally.  I wasn't as relieved as I expected though.  It was more...overwhelming.  The diagnosis was actually real.  We had a child with autism.  We didn't know any other family with a child with autism.  In fact, we still didn't know what this diagnosis meant to our daughter or to our family.  I did, however, finally have a professional who was about to give me a plan.  In a weird sort of way, now that we had an actual diagnosis...I had hope. 

Friday, August 3, 2012

Pre diagnosis days...

I think it will be useful to give some background on my gal, RJC.  Of course, she is now twenty years old which is a heck of a bunch of background, so I'll break it up over the course of a few blogs,  This is a very brief overview of life with RJC from birth to age 3 1/2.  There will be lots and lots and lots of missing info - for the sake of everyone's sanity I will only hit upon the highlights.

RJC was born in June, 1992 at 4 lbs. 12 oz.  She was a full term baby, and other than being on bed rest for the last two weeks with high blood pressure, my pregnancy was uneventful. As was done in those days, we stayed in the hospital for three days then took our gal home.  None of the professional expressed concerned about her weight and we did not know enough to be concerned, so off we went in parental bliss.

She was not an easy baby.  Not by a longshot.  RJC was a screamer from the start.  Even breastfreeding was not easy as she required absolute quiet.  At this time we were living in a condo complex, in a horseshoe.  One day some neighbors from across the double parking lot knocked on our door, handed us a baby swing and said, "Will this help?"  We had never met before this moment.  Apparently, she was keeping many of our neighbors awake.  My husband quickly spoke to another neighbor, a contractor, who finished our basement so I had a place to go at night when she was up and screaming.  We made an appointment with the pediatrician who sent us to a specialist who said it was colic and it'd all be over in three months.  He so lied.  I know because I circled the three month date on my calendar.

As RJC grew, it was apparent that she was very physically strong and extrememly coordinated.  We called her "Bam Bam" when she moved our couch with both of us sitting on it when we she was two years old.  She could shimmy up our doorposts and hover there (it was a bit scary when we couldn't find her the first time).  She climbed out of her crib with no problem at all.  And still...she was a screamer.  She did not use words; she would throw my hand in the general direction of what she wanted.  She did not point.  Tantrums were not just on a daily basis, but often on an hourly basis.  It was around this time that my mom discovered if she put on the purple dinosaur show, RJC was quiet...and content.  We were never so happy when they started selling "Barney" videos.

Just before RJC's second birthday, my husband and I went to the huge toy store to find a gift.  We went up and down every aisle.  Didn't miss a thing.  No gift.  We were just sort of standing there at a loss when I said, "You know, she really doesn't play with toys."  It set off a small alarm in my brain, but nothing major.  More like..."Hmmm.  That's strange."  I decided she needed more social interaction with children her age.  Just to be sure though, I brought her to the pediatrician again.  As I remember it, he reassured me, literally patted me on the head, and told me that I was a worried first time mommy. 

At age 2 1/2 I signed her up at a preschool for two days a week, three hours or so a day (I can't exactly remember).  I was very worried and gave the teachers a bit of a "heads up"  since the tantrum thing was now in full force.  After two weeks or so, the teacher gave me some information about Birth to Three and suggested I make an appointment.  She was a bit vague as to what they could do to help, but she was reassuring and seemed sure that this was the thing to do.  I sensed a hidden concern so I gave them a call.  In the meantime, RJC continued to attend the preschool and in truth, I appreciated the break during the week since I was now pregnant with her soon-to-be sister.  At this point, the purple dinosaur was my only hope for a quiet moment.  Those videos were on constantly.  Constantly.

I called Birth to Three and they sent over an OT to do an evaluation.  Very nice lady and she was great with my gal.  I was hopeful.  She suggested we have a Play Therapist and Speech Therapist come by.  Each would come once a week for one hour and they would help her develop her language.  In reality, only one of them showed up consistently...the other came a total of two times.  I look back at these days and can't help but to be amazed at how naive we were.  So the days went by.  She stayed in preschool, we had this nice lady come by and more importantly, we had the purple dinosaur.

RJC turned three years old and we were told that she was eligible to transition to school due to her lack of language.  We went to visit (long story) and I came home not at all happy with the program I had seen that they were suggesting for RJC.  I spoke to somebody from our school system and explained why that program was not going to be appropriate for her (none of the children in the class could talk and there was not enough movement - at this time I knew nothing about "typical peers" - it was just felt instinctually wrong)  and to the best of my memory he said something like, "Mrs. Cohen.  RJC is going to fail kindergarten.  This is all we have."  I was appalled and offended.  This was my child he was talking about.  I said something like, "But that's not the right program for her.  Don't I have choices?  And how can you tell me now that she will fail kindergarten.  She's three years old!  Do you also have the winning lottery numbers?"  Then he said something like, "Mrs. Cohen.  She needs our most intensive program.  This is what we have."  So then I said something like, "Fine.  You'll hear from my lawyer."  Then I hung up and looked at my mom who was also in the kitchen and said, "Can I even do that?"  My first experience advocating in the special needs world - and I didn't even know I was in that world yet!

My head was spinning with thoughts of what to do next, and panic that I just burned the only bridge I had, when the phone rang.  It was somebody else from the school.  Though I don't remember the conversation I do remember that the gist of our conversation was that the program was changing.  They were going to find at least three typical children for her classroom and this was the first time they were going to have a class like this.  Lots more reassuring and "we'll work with you" types of statements.  They promised she would be able to move around and that they were very excited to have her in their program.  I went with it.  I was desperate and completely lost for what to do.  RJC started school about three weeks later.

The school program turned out to be good for her.  The teachers seemed to know how to handle her behaviors, they kept her busy, she seemed happy to be there and bonus of bonuses...it was four days a week for an entire half of a day.  At the time, I had just given birth to RJC's younger sister so this time that she was in school was welcome for lots of reasons.  I picked her up every day so I had a minute to ask the teachers how she was doing.  Generally, I received the answer that she was fine, as expected she had some difficult moments, she was in the right place, etc.  I felt like she was safe when she was at school, I liked that she was with other children, and I did not mind the break from the purple dinosaur music.  Then came the day.  THE day that started our journey for real.

I had taken my six month old for her checkup and as I was leaving the office, I turned around to the pediatrician.  She was new to us, recommended by a nurse when I explained my concerns with RJC's language and behavior.  I asked the new pediatrician if there was something else I should be doing since RJC still wasn't talking.  Perhaps she should see a neurologist?  Without looking up she said, "Well, autistic children often don't speak."  Excuse me?  I told her that I thought she had the wrong child.  She put down her pen, gave me all of her attention and asked, "Didn't anyone ever tell you?"  She went on to explain that she read all of the reports (by then we had gone to audiologists - two different ones - because I was convinced she was hard of hearing) and we had the Birth to Three OT report and the Play Therapy report and the former pediatrician's report and the school report.  She had our interview notes.  This woman knew her stuff.  Yet I still thought she had the wrong child and asked her to double check.  She did.  The result stayed the same.

I left to pick up RJC at school.  I hadn't called my husband to share this news because I was still mulling it around in my brain and it's not really the type of thing you tell somebody over the phone if you can avoid it.  I was still pretty sure that there was a mixup but I went straight to the teacher and said, "So the pediatrician seems to think RJC is autistic.  Have you ever worked with an autistic child?  Do you know what that is?"  She had me follow her to another room and said, "Yes.  We have worked with autistic children and RJC is autistic."  I lost it.  Cried and cried and kept saying, "But nobody ever told me!"  She explained that as a school professional she could not give a diagnosis.  As a sidenote, I found out months later that when RJC was transitioning from Birth to Three to the school program, the Birth to Three person handed over the file and said, "She is so cute and she is so autistic."  Wow.  Our life was officially different and now there was serious research to do.  Besides the fact that I knew absolutely nothing about autism, I had to share this news with my family.  It was not a good time.  Not a good time at all.

Thursday, August 2, 2012

Thanks for coming...

First time blogging...feeling a bit nervous on all counts.  Over the years with my daughter, RJC who is diagnosed with autism, I've shared stories of our various adventures and frustrations with friends and family.  So often people have said to me "You should write a book!"  I've thought about it.  I even seriously considered it.  In truth, there are early days I'd rather not relive and I'm not sure I can accurately remember many of our experiences.  Much of the early years is a blur of little sleep and huge amounts of anxiety.  Parents of younger ones...I feel for you.

So instead of a book I have decided to join the world of bloggers.  I figure that as our lives unfold this year with RJC turning the magic age of 21 next June it would be useful to document.  My hope is that as we make our way through this unfamiliar territory we will be able to help those families with younger ones get through it when it is their turn.  No doubt there will be mistakes on our part.  I'm sure we will do things the hard way then discover there was an easier way.  We will probably make stupid decisions then have to find a way to fix the situation we find ourselves in.  History is a great teacher.

I hope this blog will be informational and inspirational at some level.  I hope that those who read my words will feel our experience and forgive our stupidity when necessary. 

I find it almost unbelieveable that my girl is just one year shy of adulthood. After all,  I am clearly not old enough to have an adult child!  When I really think about it my anxiety kicks in.  We have been blessed to have her in an awesome school program but that will no longer be an option.  Somehow we have to figure out what day program will be a good fit for her.  Where will she be safe?  Where will she be happy?  Who can we trust to take care of her physically and emotionally?  Where can she continue to learn while developing a skill?  What program is able to handle the behavioral issues as they crop up unexpectedly?  Does such a place exist and if not...then what?  Then there is the endless paperwork I expect that will come with the process.  Ooooh...the thought is making my stomach churn already.

Over the next few days I'll try to give a bit of RJC background.  Relive some of those younger days (ug) and, on a practical note, figure out how to make this blog accessible.  So, thanks for coming...