A while back, MOM-NOS, another blogging mother of an echolalic son, wrote a fantastic post on the subject of accepting and working with her son’s echolalia that I happened to find at a crucial time when I was out of my mind over Blue’s repetitive use of scripted language. What she (and Barry Prizant) had to say about using his scripted speech as a starting point for engaging and communicating with him totally resonated with me, and I resolved right then to try to use it as a connection point with Blue.

From that point on, I learned his favorite scripts too. If he started with one line, I’d say the next. Sometimes this delighted him and you could see the twinkle of recognition, a spark of communion in his eyes. Other times he made it clear he wanted to be alone with his script and would voice his anger with a shriek or yell – no matter, it was still communication, we were still interacting. He knew I was trying to meet him where he was at. When he was willing to share, we could share it together, and I truly believe this led to more and more meaningful exchanges between us. SO what if we were singing about how “sooner or later, everyone has to go pee-pee, wee-wee, TINKLE!”  We had fun with it, hammed it up, and helped each other stay open and accessible. I may also point out, it is awful hard to be cranky or take oneself too seriously when singing “Pee-pee, wee-wee, TINKLE!” at the top of your lungs; another added bonus.

So one of his favorites now is an episode where the inimitable Wonder Pets help a shy baby swan have the courage to get out into the middle of Swan Lake (yes, it’s set to Tchaikovsky’s score of the same name) and dance  his part, even if it’s not exactly like the way the other swans dance. To encourage him, each of the pets takes turns dancing “their own way”.  (Kind of an on pointe message for a little boy on the spectrum, n’est pas?) 

Which is why, if come to our house, you might see me spontaneously boogie down in the kitchen when Blue yells “Do it your own way Mama, shake your fluffy stuff!”  Then Blue will dance his own way, and if you are willing, we’d like it very much if you would join in too. (And as always, the pineapple is optional.)

One of Blue’s favorite, favorite, favorite things is this  online Flash animation of Tom Lehrer’s musical rendition of the Periodic Table of the Elements. He’s been trying to memorize it, but hasn’t gotten it quite down yet, which I’m actually kinda glad about. Saves me the task of explaining to people that he’s reciting the elements at three and a half. 

Anyway, he truly does enjoy the song and the animation. Thank you Mike Stanfill. All those hits you’ve been getting at www.privatehand.com, yup, they’re from us…

Blue has always had a tendency to latch on to certain objects or parts of toys and be rather obsessed with them. There was a phase where we always needed to take some transitional object with us when we left the house, usually the last thing he was playing with when I announced it was time to get in the car. This made for some interesting trips, like the time he insisted on bringing three colored plastic coat hangers with him to Target. Or the two big blue wire wisks to the supermarket. Or a Donald Knuth book to the mall. I kid you not.

Just before Christmas, I was in a cleaning frenzy trying to get the house in order to host all my immediate family here. This is the only explanation I have for why Blue suddenly became obsessed with cleaning products. There are two specific brands that he’s especially enamored of, one has a bold blue logo (he loves the color blue), and the other has an eye-catching orange and blue diamond in its logo, which Blue loves to point out. “Mama, look, there’s a diamond!”  

I’m sure their manufacturers would be thrilled for me to mention their names, but until someone sends me a contract stipulating my compensation as a percentage of revenue, my lips are sealed.  

There was the last minute dash to the supermarket, right before Christmas, where Blue discovered that aisle #8 is the cleaning products aisle. Dear Lord in Heaven help me. With only four items left on my list and a quick exit through the checkout nearly within reach, he demanded, DEMANDED we go to aisle 8 and get more bottles of a certain cleaner/disinfectant.

The problem, apparently, was that I had picked up only the blue and yellow versions of this product. Blue, with his inimitable powers of observation and memory (and persistence) urgently informed me that we had to go back to aisle 8 and get the orange and purple versions as well. At $4.50 a bottle, this was going to cost me $18 for more cleaner/disinfectant than we use in a year. However it became clear, quickly, that if we did not collect the full set of colors, no one was getting out of there alive. 

So what did I do? I went back to aisle 8. We got the orange and the purple. I got the last four items on my list, we got to the checkout (Blue clutching the four bottles in his lap like gold) and got home without An Incident. 

And now my house is really, really clean. And disinfected. 

Except I have to keep refilling the used bottles with water and food coloring to match the original shade of the cleaning solution. Really. Yes, I know how crazy that sounds.  Can you imagine a scenario in which you’d be really, really motivated to replicate the exact color of a cleaning solution?  If you can, then you know what I’m talking about. If you can’t, congratulations, I’m very, very happy for you. 

Blue likes to line up his botles of cleaning solution (yes, I know how bad this sounds, I let my kid handle bottles of potentially hazardous household chemicals). He never tries to open them, just line them up and look through the clear plastic bottles to see the world in different hues. He becomes extremely distressed if the bottles are put away in a safety latched cabinet and will ask for them repeatedly, perseveratively, unendingly, until yes, you too would be willing to let him have them, anything to make it stop. 

Unfortunately this obsession has now spilled over into commercials for specific cleaning products, which he now asks us to play for him (those that are Tivo’ed). Being echolalic, Blue has also memorized these commercials and repeats them verbatim – at home, at preschool, in the mall, in the car.  Sometimes he even uses original speech to tell me, “Mama, we need to go to the store and get [Product X]. Okay mama?”  

[Note to Reckitt Benckiser, Inc. and that company that starts with "C" and ends in "X", have your people call my people. You'll find my terms very agreeable. I'm sure we can work out a deal.]

But it is a new year, Blue is in preschool (half days, 4-5 days a week, integrated) and maybe I might have some time to devote to this now, before son #2 arrives. Maybe.

I’d say it was a definite C, as in, on average for Blue. Nothing happened that I didn’t expect:  he freaked out when everyone started singing (badly) during circle time. He refused to eat at snack time. He wanted to play by himself and kept avoiding the other kids. And he was determined to get on the blue toddler swing and stay there all morning, if he could. 

A few things that didn’t happen that I was glad about:  he did NOT hit anyone. This was a big concern of mine going into it. Not only did Blue not hit anyone, but he didn’t even hit the little girl who kept muscling into his personal space. I thought for sure he was going to deck her, but he never did. That was something. He did find some things about the morning enjoyable, like playing with the toy tool bench and “fixing” things.  He also very briefly participated in an art project, which kind of surprised me. It’s usually next to impossible to get him to participate in such things. 

So it was a mixed bag – some things good, some things not so good. By 11:00 he was desperate to leave though, and kept saying, “Bye bye school!” and kept asking to go to the car. I’m not sure who was more ready to be done – him or me.

“The main finding of the study is that it has enabled us to confirm that tactile sensations are initially located unconsciously in anatomical coordinates, but they reach our awareness only when the brain has formed an image of their origin in the spatial coordinates, external to the body,” The coexistence of different spatial reference frames in the brain has been known for some time. So has the fact that confusions between them may result in some cases, such as when we invert the usual anatomical position of some body parts (e.g. when crossing our arms over the body midline). “The brain sorts out problems of this kind rapidly, in a matter of tenths of a second. To do so, however, it has to integrate information arriving in formats that are quite disparate”, Sotoa-Faraco added. “Our research has helped us understand how this process works and how the brain manages spatial realignment when faced with conflict”, he concluded.

This has fascinating implications. The article goes on to describe the tests they used. I wonder what the results would have been if the individuals tested had Sensory Processing Disorder?  Could it be that in people with SPD, this process of unconscious recognition doesn’t happen? Given the immediate “fight or flight” reaction to stimuli experienced by those with SPD, one wonders if this could be the case. Something could be going wrong in the the brain’s ability to locate the stimuli. 

Something to ponder.

Canker 

Kookhanker

Goathanker

And the answer is:

Coat hanger!

By the time he came out with “Kookhanker” I lost it and dissolved into an uncontrollable stress-giggle fit. (Ah yes, it’s been a long week!)

He became so enamored of the green plastic coat hangers in his closet that he just had to take them to bed with him. Several of them. He tucked them in under his special blanket, but kept fidgeting with them to keep himself a wake. So they had to go back in the closet, where they were cozy, we explained, so they could go to sleep. 

Good night kookhankers! Good night cankers!

Some notable moments: 

Blue very quickly started referring to the new EI provider by her name. That almost never happens. 

Blue started saying “Yeah” to indicate an affirmative, instead of “OK” which is what he has been using since he began talking. So instead of “Blue, do you want milk?” “OK!” we heard, for the first time, “Blue, do you want to play with the purple ball?” “Yeah.”  He also said the more formal “yes” on several occasions. 

He’s been more helpful and will pick up toys when prompted to clean up. He’s also learned to say “Clean Up” when he wants to indicate that he’s done with something and wants to move on. We’re still trying to get him to say, “all done”. Sometimes he’ll say it, or answer the question, “are you all done with this?” but not consisently

For the first time, he said: “My name is Blue.” He also said, for the first time, “I am two.”  Music to my ears. 

He became very affectionate with his original Early Intervention service provider, giving her eskimo kisses on a couple of occasions. Today he gave her great big hugs, and I think that really made her week.  

there is more, but that is all I can write at the moment. I am very encouraged over all. It gave me some good perspective to hear his service coordinator say today that he’s made a lot of progress over the summer. To me the pace feels glacial at times, but looking back I can see she’s right. We have come a long way since his first evaluation on April 2.

It wasn’t even a full 5-day EI services week, but I am wiped. Really looking forward to recharging a bit tomorrow, to having a day with just Blue, his Dad and I.  We definitely need to recharge for round 2 next week.

Since I wrote this post, I’ve gotten a grip on myself again and have thrown myself into the task of figuring out how to do everything else we need to do on a daily basis in and around our service appointments. So far, it’s okay. The biggest challenge remains adjusting Blue’s nap schedule. Yesterday, after his service providers left, he slept for two and half hours and didn’t wake up (willingly) until quarter past four. Given our difficulties with getting him to settle to sleep at night, this made me panic a bit, and I was afraid we were going to have a long night of wakefulness. But he went down pretty much on schedule (8:30) and slept through til 5:50 am – this is a good night for us. Actually, that’s about as good as it ever gets! 

He’s up now at 3pm, after sleeping about an hour and fifteen minutes. This is good. It could all be working out. Much better than I expected.

Okay, so I know I should be happy that the intensive early intervention program starts next week. And I should be happy Blue’s going to get two hours, five days a week, because we should make good progress with that, right? And I should be thankful that this extra help is available to us, paid in full.  

But since the service coordinator called me Friday with our schedule – our new schedule – I’ve been alternating between dread, fear, and just plain old garden variety depression.

Dread. Why am I dreading this? Well. Let me put it this way. It took me almost the entire first year of Blue’s life to get him on anything resembling a schedule. Even then, it takes, on average, a hour to get him to sleep for a nap, longer for bed time. And finally, when Blue doesn’t sleep when he should, or not as much as he should, bad things happen. This brings me to Fear. 

Fear. Why am I so afraid? Well. It could be because when Blue is off his schedule, we can make the kid in the Exorcist movie look like a lap dog. My beautiful big-blue eyed boy becomes.. well, other. All the stuff we deal with daily gets THAT much worse. He won’t transition without carrying about ten assorted objects with him (outside, into the car, to the grocery store – have you ever brought hard boiled eggs with you on all your errands? Then you know what I’m talking about). The meltdowns, which are already legendary, reach new heights of scary and take longer to diffuse (they absolutely cannot be avoided when he’s sleep deprived).  Every transition – from playin to stopping to change a diaper, from dinner to bathtime, upstairs to downstairs, sleeping to waking – every one becomes a potential flash point for a nuclear meltdown. Every transition has to be handled with extreme calm, fortitude, resolve and patience. Sometimes that helps. Sometimes it doesn’t, and things get ugly no matter how calm and resolved I am. 

Depressed. Why am I depressed. As it happens every month or so, there is always a point at which I stop running in mid-air (a la Wile E. Coyote) and realize there’s nothing under me. I’m the only one that keeps me – us- going. We keep going and we keep moving and we stay afloat.  if we look down, we’re sunk. 

Today I looked down and crashed, and had a hard time pulling myself back up again.