Susan's Blog

Monday, April 4, 2011

Look behind the lack of language

We are now phasing in more away weekends for Nat, to accustom him more to making his weekends work well in the group home.  The problem is, I got the idea in my head a while back that Nat’s move-out in November, at 22 would be similar to Max’s move to college this fall.  I mentioned this topic to Nat a couple of times, not knowing I was contributing to his anxiety level. At school he has been having episodes of anxiety which are almost always around House to School, vans, dismissal, and absences.

I forget sometimes just how much Nat knows, even though we are all hearing frequently about this person with autism or that one who learned to communicate at last and almost the first thing he or she said was, “Stop treating me like I don’t understand!!!!”  (Carly Fleischmann is my favorite success story; I know the family personally and I really admire Carly for her skills and quick wit. Carly also attended Extreme Sports Camp with Nat.)

Nat doesn’t like to type to communicate, but he is becoming very adept at terse, no-frills speaking.  The other day the staff had to pull the van over to the side of the road because one of Nat’s housemates was having a seizure.  Nat kept repeating, “Drive to school,” or some other of his commands, but of course they could not until the student was restored to calm and safety.  This occurrence also meant that Nat could not get the explanations he needed to calm down, and having the bus pull over is a huge deviation from the routine.  These days, Nat needs us to talk to him, regularly, and also, to watch what we say.

Nat is a thin guy, all bone, sinew, and neuron.  He almost jangles with neurological activity when he walks.  During the fall, we reduced his Resperadal — in my view, the less of it, the better, because of potential side effects — and he became more lively.  Actually, he became more alive.  And being alive comes with anxiety and worry as well as joy and other emotions.

I believe the lower dose of Resperadal made him able to talk more.  It makes sense:  if you are less sedated, you are more awake.  He has less to shield him from what’s going on around him.  We believe he can handle this now, and so far, so good.  This development reminds me of when he was 10 and we tried him on zoloft.  Zoloft cut down on his anxiety a bit too much, so he was way too relaxed and giddy, and eventually became mischievous, which then begat aggression.  (Or so we think.)

Nat is talking bit by bit, more and more, yet with every new occurrence of his competence, we are surprised.  It’s become a thing for Ned and me, more of our Couple Culture (which I think is a key to successful marriage.  You need to have history that you enjoy and refer to and laugh about.  You need to be loyal to your couple history, and elevate it above anything else in your life.  That is my two cents, and I’ve been happily married for nearly 27 years).  So Ned and I have our Nat stories that we bring back to each other, like I did with the Stop&Shop trip; that was the Saturday Nat Story.

Last Sunday Ned took Nat on a walk into our downtown and they passed a woman in a car that was double-parked, in front of an empty space; she was waiting for traffic to clear so that she could parallel park there.  She was waiting too long for Boston standards.  This is the kind of annoying thing other drivers notice and honk at.

After they passed her, Nat turned around to look at the car sitting there.  Staring at the woman and the car for some time, Nat finally pointed right at her and quietly said: “Park.”

Sometimes less is so much more.


Couple Culture is a great concept. Did you coin the phrase? It’s related to being friends with people you’ve known forever though you probably wouldn’t pick them as new friends. Not to say that I wouldn’t still choose Blake, but the more history you have, the closer you are. Goes for relatives too, I think. Anyway, I love Couple Culture!

— added by Donna on Monday, April 4, 2011 at 4:21 pm

It took about 3mths for my youngest to get comfortable with his school and now he chatters constantly with them and we are getting longer phrases. But in the beginning I warned her she would have to translate at times. One of the first was “applesauce”… “criss-cross applesauce” is what they are taught in Kindergarten to sit on the floor and cross their legs.

She was very excited to have been able to help him.

I’ve learned to translate “autism-speak”, but sometimes you really do have to treat it like a crossword puzzle and look at all the clues. I try hard to give every attempt at speech a response. He appreciates my attempts and talks more and more to me all the time…. may be 2 to 3 yr old speech…. but I’m not complaining.

Sounds like Nat’s doing the same. Awesome.

— added by farmwifetwo on Monday, April 4, 2011 at 4:25 pm

I love that Nat got it about the lady taking too long to park…that is hysterical! Dylan’s speech has really come a long way, and he cracks me up how he uses his favorite lines from books in day to day life, and it just fits. Like when I tell him I have to trim his bangs, he’ll recite dr seuss “their hair grows so fast they say…they need a haircut everyday!”

— added by Eileen from Florida on Tuesday, April 5, 2011 at 8:35 am

Eileen — that is exactly how Nat learned to talk: by using lines from his books as reference points! Including One Fish Two Fish!!! 🙂

— added by Susan Senator on Tuesday, April 5, 2011 at 8:37 am

It’s great that you were able to cut down on Nat’s medication. Many parents are afraid to do this, but the fact is that what he might have needed earlier on, may not be what he needs now, partly because with practice and maturity, he is able to manage without so much medication. You’re giving him a chance to think more clearly and express those thoughts better by cutting back. That’s a wonderful thing!

— added by Sherry Rubin on Tuesday, April 5, 2011 at 9:39 am

I love how many stories you have lately!

I really hope my twins will use their echolalia to communicate. They can certainly memorize and recite almost anything (during their every waking moment).

It’s so exciting to hear about Nat’s progress. He seems a lot like my sons, so it gives me hope at times when I could really use some.

— added by Alice on Tuesday, April 5, 2011 at 11:11 am

You should have hope, Alice!!!!!!! Trust me on this one. And you know I don’t mean they’ll be “cured.” I mean you will love who they grow to be.

— added by Susan Senator on Tuesday, April 5, 2011 at 11:23 am

Anyone with autism will call it as they see it, that’s for sure. There is no political correctness, either. Last year in school when trying to tell me about two girls in his class that both have the same first name, Matthew ended up calling them black Madison and white Madison, his only way to tell them apart. There is NO way I could ever get my son to say “African-American” that’s for sure or even make him understand what the term means. So, I explain to the girls, Matthew has autism, nothing personal, but that’s the way he sees you so that’s the way he may talk to you, he isn’t trying to be rude or offensive, blah, blah. I thought he was beginning to understand some of this but just last weekend I asked him who helped him move his bed in his room and he replied “that black guy” and pointed. Oh well, as least he can point, that’s something he had to learn, also.

— added by Sharon Jones on Tuesday, April 5, 2011 at 2:06 pm

“Park” Love. it.

— added by Juniper on Tuesday, April 5, 2011 at 8:28 pm

Sharon…Dylan will also comment on a persons color and like you, there is no way I could get him to understand to say something otherwise…it is like he is talking about a blue sky or white clouds. When he was first able to talk enough to comment on someones color, and he commented on someone being brown…I asked him what color he was, and he said “pink!”

— added by Eileen from Florida on Wednesday, April 6, 2011 at 9:44 am