"Don't forget me when you go..."

You may (or may not) recall that on Saturday I was busy feeling awful and sad after a frustrating end to a session in which I was trying to stop my client from trying to eat parts of his clothing.   Well, I think that what I neglected to focus on in thinking about (or, more accurately, reacting to) his session was the fact that the drama occurred at the end of the session...shortly after I let him know we had about five minutes before we needed to stop for the day.  A-ha!

This particular gentleman truly dislikes saying “goodbye” at the end of our sessions.  While he doesn’t use speech he can be quite clear in pushing himself (or me) away (sometimes literally, sometimes emotionally) when I begin to prepare him to leave (i.e., helping him with a jacket, getting the foot pedals back on his wheelchair, singing “goodbye”, etc.).   I guess we can now add “chewing on his shirt” to the list of ways he uses to create distance and to make endings a bit more tolerable for himself.  Of course, while it’s less painful in some ways to end angry (or to create a reason for my leaving- something to the effect of “you must be leaving me because you’re angry with me”), it still doesn’t take away the distress and pain.

So, when I went to pick him up for his session today he didn’t seem all that enthused about going with me.  At the same time, he wasn’t exactly adamant about not going with me, so we ended up getting to our session.  When we got there it took me a while to assemble myself, because I was nervous and not certain that my guess about why we were so upset with each other on Saturday was correct.  I presented him with my thoughts- specifically, the fact that our difficulty seemed to happen right when I let him know we’d be ending our session.  I also noted our long history of his expressing frustration and anger toward me when it’s time for us to sing “goodbye”.  

His response? We went from minimal eye contact to his practically staring at me.  It seems I was on the right track.  

We have often used the song “Don’t Forget Me When You Go” in our work together.  It’s a song I wrote, inspired by just this sort of a situation.  Here are the lyrics:

Do you have to go?

You know how I hate this part

You know how I cherish the time we spend together

Why so soon?

It seems like we just started

I swear it was just moments since we said “hello”

Do you see how it matters to me that you be here?

Will you remember to come and see me again?

I wish I could be with you always and forever...

Don’t forget me when you go.

Just one more thing

Please, I know, it just can’t wait

Just let me say this one last thing to you

Yes, it’s true

I didn’t want to leave just yet

I’m searching for a way to make this last a little longer

Do you see how it matters to me that you be here?

Will you remember to come and see me again?

I wish I could be with you always and forever...

Don’t forget me when you go.

When I’m with you I’m singing

And I forget for a little while

I’m learning how to mend my own heart

But it’s so nice to have you beside me for the ride

Do you see how it matters to me that you be here?

Will you remember to come and see me again?

I wish I could be with you always and forever...

Don’t forget me when you go.

©Roia Rafieyan, 1999

[Note:  You can give an actual listen to this song by clicking here.  Just give it a minute to load the player.]

I was all set to play it, but Phil Collins’ song “Against All Odds” kept singing loudly in my head (I’m sorry, but I don’t know how else to describe it-  basically, this is how I often experience countertransference in music therapy sessions with clients).   Here are some of his lyrics:

How can I just let you walk away

Just let you leave without a trace?...

How can you just turn and walk away

When all I can do is watch you leave?

‘Cause we’ve shared the laughter and the pain

We’ve even shared the tears

You’re the only one who really knew me at all.

So take a look at me now

‘Cause there’s just an empty space

And there’s nothing left here to remind me

Just the memory of your face

Take a look at me now

Well there’s just an empty space

And you coming back to me is against the odds

And that’s what I’ve got to face

I wish I could just make you turn around

Turn around and see me cry

There’s so much I need to say to you

So many reasons why

You’re the only one who really knew me at all...

...But to wait for you is all I can do

And that’s what I’ve got to face.

Take a look at me now.

©Phil Collins, 1984

Powerful, huh?  Talk about your maternal transference.  This man is someone who has barely (if ever) seen his family since they institutionalized him as a child (he’s in his 40s now).  The fear of abandonment is always there.  Always. 

I had actually used this very song (the Phil Collins one, I mean) in his session a week ago, and, while he was definitely listening at the time,  there was some serious shirt eating happening toward the end of the song (interesting that it was hard for him to come to the end of the song as well).  At any rate, if a song is playing that loudly in my mind I usually figure it’s there for a reason, so I played through it again.  This time he listened straight through to the end.  His hand was poised on the collar of his shirt to start biting at threads, but he didn’t do it. 

There were heartbreaking moments in our session, but, judging by the amount of eye-contact he offered and the fact that he hardly chewed on his shirt it seemed as if we were on the right track in terms of having some insight into what was upsetting him on Saturday.   And there was the relief that comes with re-connection.

One of the my favorite quotes is from L.A. Pearlman and K.W. Saakvitne’s excellent and helpful book Trauma and the Therapist:  Countertransference and Vicarious Traumatization in Psychotherapy with Incest Survivors (1995):

“...psychotherapy does not promise perfect attunement or mirroring, but entails repeated cycles of connections and disconnections and then repair and reconnection.” (p. 17)

Conflicting reports

Yesterday I was listening to “This American Life” on NPR, and they had a segment called “Hit me with your best shot”.  A family spoke about their decision to put their child, who has autism and is rather aggressive in his interactions, into an institution.  What made listening to this particularly poignant for me was the fact that I was on my way to visit my friend  who has autism and who has lived in an institution since he was a youngster.  

I’ve always been anti-institution on principle- even though I’ve worked in one for 19 years.  To me, institutions are not a good place for people to live.   At the same time, I struggle with this belief, because, sadly, for some of my clients, living in an institution has been better for them than living with their families.   Worse, a lot of the folks we send out to the community to live in group homes have ended up coming back, often not in great medical shape.

The other thing I’ve started to think about is that there are a lot of people living in residential facilities who seem to function better when there are a number of carers involved.  I don’t mean that someone should have a different carer every day.  I just mean that people with a lot of needs that aren’t being met (sometimes- maybe a lot of times- because the folks supporting them can’t always figure out what those needs are) tend to act in unusual ways.  Dealing with unusual is fine if you are a carer and you have a lot of other people to rely on (not that staff in institutions get all the emotional support they need to do their jobs, but at least at some point their shift comes to an end and they can go home).   If you’re a parent (or parents) then it’s pretty much you.  All the time.  And it’s scary when your kid is freaking out and you don’t know what to do.

I’ve had that experience with my friend who I visit at the institution.  He and I often take drives together.  It’s something we both enjoy.  Sometimes we get out and take a walk or go to the library or buy vegetables at a farm stand.  On occasion, when he gets out of the car he won’t get back in.  At all.  When I’m 15 or 20 miles away from his home and his staff that’s a terrifying experience.  He’s very strong when he’s decided not to do something.  He’s not mean about it- just extremely resistant.

Yesterday, as I was listening to this family’s experiences, I wondered if there’s something to be said for out-of-home placement simply because the people doing the care-taking are not so emotionally involved.   Autistic people are so sensitive to the feelings of people around them, and I wonder if that sensitivity makes it harder to deal with parents who, rightfully, have a huge emotional investment in their child.  

Interestingly, also yesterday, someone in an email group which I belong to sent along a link to this article: “Treating those with autism like [competent and worthy human beings] shouldn’t be a radical notion”  The article addresses, among other things, the issue of movement differences and challenges experienced by many people who are on the autism spectrum and how, often, the inability to organize one’s actions have lead to incorrect assumptions about intelligence and intention.  Thanks to the use of alternative means of communication, there are people who are now able to convey their frustration at being unable to control their bodies and at being misunderstood.  

Another very important topic which is touched on in the article, probably more gently than it needs to be, is the abuse of people who have disabilities.  Abuse has a profound effect on everyone regardless of whether the person has a disability or not.  Sadly, I can’t say that abuse happens any less when people live with their families than it does in an institution.      

So I’m left without any answers (as often seems to be the case) and a lot of thoughts and uncertainties.  I did talk with my friend from the institution about the family and their final decision to institutionalize their son.  My friend doesn’t use any speech at all- in fact, he’s generally silent.  He does have a special sound that he makes which sounds like a cross between clearing his throat and getting his nose stopped up, and as I asked him what he thought (because I always ask him what he thinks) he responded with a lot of his sounds. 

Not quite right

I left work today feeling as if I’d done something wrong.  I mean, logically, rationally, I know I didn’t, but, for some reason, today I feel as if I did.  Honestly, as I’m sitting here and thinking about the interactions I had with my clients this morning and this afternoon, I can’t say that there was anything I’d have done differently.   

I was frustrated after person number one, sad and defeated after person number two, confused by person number three, and felt as if I’d blown it with person number four.  Actually, I’m fairly certain that person number four felt as if he was the one who blew it in our session.  I think the intensity of the feelings he is experiencing is overwhelming for him, and, to his credit, he came to his session anyway, and he did his best (not unlike the situation with the person I described yesterday).  His best involved refusing to be in the Music Room, dashing around campus with me trying to keep up, making a bold attempt to steal someone’s coffee (I made a daring rescue), and finally ending up back at his home base (after I quietly gave him the choice of either returning to the Music Room and figuring out what the problem was or going back to his cottage).  

I don’t usually get stressed out walking with him.  In fact, I rather like to walk with him, because, usually, there’s a very nice easiness about our movement and interaction.  Not today!  We sat outside for a couple of minutes before heading back in to his cottage (it was his “request”), and he looked at me for a while, and I looked back.  It was then that I realized how hard he had been working to keep in contact with me, so I complimented him for his efforts (especially since he used to just plain refuse to come at all- again, not unlike the person from yesterday’s installment).  A little later, as I walked back to the Music Room feeling a bit disappointed at how short our session had been, I saw that he needed to not be in the intimate space of the music therapy session until he could get his feelings back under control.  

Meanwhile, I truly felt awful after session number two.  After vainly trying to get the man to stop eating threads from his clothing, I literally had to say to him “you know what?  I am waving the white flag.  I admit defeat.  I am sending you back to your staff.  Let them stop you from destroying your innards.”  I said this in frustration, but I immediately felt very sad (a sure sign of projective identification- I’d almost swear it).   I told him we’d try again on Wednesday, and I continued to feel sad through half of my lunch hour.  

So, yes...today was not quite right.