It has been a little while since I have had a deep, insightful, well-articulated post full of inspiration, or outrage, or quiet contemplation.
And it is gonna be a while longer, because that ain't for today.
Today is a Brag Fest, an opportunity for me to just go on and on about how excited and proud I am of my J-man. To tell you all the little things that he is doing that, when added together, feel like really big things.
Books
I'll start with books. As you may remember from eons past, I have been woeful of J-man's complete lack of interest in anything book-like. Not only does reading books with your child promote literacy and a love of learning, it also is an excellent joint attention and social communication event, and the fact that J-man had zero interest in it made me sad.
And dare I say it.... I think those days are gone. Dare I dream?
It started about a month ago. With Christmas a mere 5 months away, we started receiving toy catalogs in the mail. I handed one of them to J-man and pointed out the toys. Toys... his interest was peaked. Pretty soon we were sitting down, looking at the catalog together and he was pointing to the pictures and I was labeling. Then, he started to imitate my words. Then, I could point to a picture and he would tell me what it was.
We have now, offically branched out to real, honest to goodness books. They are simple stories like the series by Leslie Patricelli, with lots of opportunity for improv, emotion, and engagement. He now anticipates what the next word is. He is "acting out" scenes. He points to words and says them (in his "apraxic-Martian" way). And most importantly, he wants to read books with me!
Games
He is starting to play games with us. Simple games like catch and stop-go-race. But today.... ah, today... I witnessed a game-miracle. Today at speech, we played Cariboo.
Twice.
There were an awful lot of J-man 'my turns' and prompts to let us be involved, but he did it. Twice. He said words for each door, followed simple directions, and did some very basic turn-taking.
Pretend Play
With Halloween merely days away, I bought J-man a Superman costume. He adores it. Adores!! He insisted on wearing it all the time. He 'flew' around the living room, holding the cape out to make it "blow in the breeze".
It was hard to get a picture because
he is faster that the speed of light!
So then I went back to the center of the universe (Target), and bought him a Spiderman pajama set. It also has "wings" (I didn't think that Spiderman flew, but whatever), and he 'flies'. He also makes his Spiderman doll fly as well. And Ironman. And Buzz Lightyear. He has a thing about flying....
And he refuses to take this one off either.
Off to Speech.
This would look weird if it wasn't Halloween
What makes all of this so very very grand is that he wants to do each and every one of these activities with us and he makes tons and tons of 'social sounding' or word attempts all the time. We still have miles to go, but the road seems to have gotten a little less uphill.
J-man's level of "engagement", interactive play, social sounding and word attempts has really been on the rise. I mean, in a exciting, "I can't wait to see what he will do next" kind of way. However, J-man is also starting to exhibit some "less that desirable" behaviors, including 'arguing' (no no no no), hitting, and some all out temper tantrums. In many respects, this is to be expected. As children begin to develop communication skills, they begin testing limits and using that communication to try and get their way. An up-tic in negative behaviors is actually a positive sign, but let's face it: It must be nipped in the bud.
The Communicating Partners approach to dealing with this is probably a common one, but one worth mentioning here. Basically, Dr MacDonald says that giving your child attention, interaction, and communication is like giving them a $50 bill. So, if you want to increase the behavior, you give them all of those things. If you want to decrease the behavior, you give them none of those things. No negotiation, no "talking it through", no explanations, no arguing, no feeding into the drama.
And tonight this approach was put into practice.
J-man was taking a bath (he LOVES bath time) and was all prune-y, so I told him "time to get out".
"No no no no" he said (a response!!! heheheh)
"Yes, all done" I said, and I drained the water. He started pitching a fit, so I took him out and brought him into our bedroom. I calmed him down, but as I tried to get him dressed he lost it again, refusing to let me put his diaper on. He yelled and screamed, hit out at me, kicked his legs, etc etc.
And here was my thought process: My goal is to get him dressed. His goal is to not get dressed AND to fight with me (get attention). Therefore, my NEW GOAL needs to be to not reinforce this behavior.
So I left the room and went into the hallway.
My hubby came upstairs to see what all the fuss was about and I told him not to go in yet. J-man was crying and he came running into the hall and took my hand to bring me back to the bedroom. I said "ok, diaper", and he said "no no no no". My husband then began negotiating with him (a No-No!!!) and J-man went back into temper tantrum mode. So I told my hubby "Let's go out" and we both (wordlessly) went back out into the hall.
J-man was ENRAGED that we left again. He cried and screamed for another minute, and then followed us into the hall, grabbed both our hands and pulled us back into the bedroom.
And willingly got dressed. Even helped! And was grinning and babbling by the end
What I learned:
1. Feeding into J-man's negative behaviors only increases the behavior (the $50). When Daddy came and gave him attention, he started up all over again. When we both denied him the attention, things changed quickly.
2. J-man WANTS to interact with us. He was sooo upset when we left, when he had no one to be with, even though he had 'gotten his way' to stay naked. It was more important to him to be with us than to get his way.
Ok, you know I don't pimp products or services here. I will occassional review something because I like it, but I am not into pushing anything. That's just how I roll.
But...
I am a total geek when it comes to research. Maybe it is because I did the whole doctorate/grad school gig and know what that is like. Maybe it is because I know that quality research is our best hope of making things better. Who knows....again, just how I roll....
So when I received a letter from Columbia University's Institute for Social and Economic Research and Policy (Really guys? Think about shortening that title. From now on, the CUISERP) asking me if I might let my readers know about a study they were conducting on parent experiences related to their child's diagnosis of autism, I can't help it.... my inner geek said YES.
So, if you have a child with an ASD diagnosis and have a little time to fill out their survey, please please do. It is a chance for your voice to be heard. And please, pass this post on to anyone else who might also be willing to lend their voice.
(the letter below)
Dear The Crack and The Light,
We are researchers at Columbia University's Institute for Social and Economic Research and Policy studying autism. We are currently collecting life stories from parents about their experiences in recognizing their child's autism, seeking professional help and navigating the available service systems. We think participation in this study would be of great interest to your readers, and we would like to invite you to write about our survey on your blog.
The goal of this project is to gain a better understanding of the road to diagnosis. Parents have different experiences and observations of their child's development and they have different personal resources with which they access care and services. Parents also differ in the type and extent of their support networks and social relations. And finally parents make different decisions in their quest for obtaining the right diagnosis and care for their child. We would like to give parents the chance to tell their stories. Participation in the survey may help us understand the heterogeneity of autism as well as how children develop over time.
We are collecting life stories of parents of children who have autism through an online semi-structured survey at our website, http://www.understandingautism.columbia.edu/ . You could help our research tremendously by encouraging parents to participate in our study.
We thank you in advance for taking the time to read through this invitation and considering writing about our survey on your blog. Please feel free to contact me via e-mail at understandingautism@columbia.edu or telephone at 212-854-3440 at with any questions that you may have.
Sincerely,
Peter Bearman, Principal Investigator Cole Professor of the Social Sciences
Well, I still really can't talk about IT. I will, someday.
But we did have a Big Meeting. A five hour Big Meeting. In all fairness, there was a lunch and pee break in there, so it was probably only four hours. And some things were ironed out, discussed, and hopefully put on the good path of righteousness and virtue. Clearly, communication on both ends has been less than ideal (Us included. Hey, I own my sh*t). Cautiously optimistic and hopeful am I. The ultimate decision, however, was.... and hold on to your hats.....drum roll please.... we need to have another meeting!
*sigh*
It's okay, in a way. It needs to happen. But given the ulcer-inducing level of stress this has been over the last few weeks, I am sure this will take 10 years off my life. Seriously, while one can live on four hours of sleep at night (damn insomnia) and it is great to lose 7 pounds in a two week period (related to stress-induced nausea), I am not sure my creaky, aging body can handle much more.
I used to be cute. I guess J-man is going to have to be cute for the both of us.
The only thing that kept me remotely sane (aside from J-man, my hubby, and the great lot of you who have emailed, called, or personally given me support... you rock my world, people!) was my re-reading of the Mercy Thompson series. I just can't help it, that vampire fighting, coyote-shapeshifting girl mechanic with her werewolf-love-triangle just hits me right here. It is this awful guilty pleasure... like confessing you like Barry Manilow or that you eat cold SpaghettiOs out of the can. I do read literature. I do. But there is nothing like the cavity-inducing brain candy of the Mercy books to make me forget my troubles and get lost in the trials of having hot werewolf men chase after you (in a good way) while battling vampire demons or fairy queens or whatnot.
I re-read all five books.
And now they are all done, and I need more Mercy.
So dear Ms Briggs, if you are reading this, please hurry. My sanity depends upon you.
A few days ago, Daddy bought J-man a Buzz Lightyear Blaster (aka 'the gun'). Now, let me just say I am not a huge fan of toy guns and this is honestly the first one J-man has had. But it lights up and shoots foam darts, so J-man thinks it cool. Whatca gonna do? Apparently it is in those boy genes. He can't actually fire the darts yet, and it lights up and make "pew-pew" shooting noises.
Yesterday, J-man found a old Word World Duck. Without the K. The letters stick together with magnets to form the duck/word.
So we were in the living room. J-man had given me the Duc in frustration because he couldn't get it to stick together properly. I fixed it, and while I fixed it he started playing with the gun. You know, pulling the trigger to make it do the "pew pew" noises. When I got Duc fixed, I showed it to him and said "Here's Duc".
He shot at the Duc. With the gun.
Now, you have to know that J-man hasn't really understood what the gun IS. It makes noises and shoots foam darts. But not people, or Duc-s. And to be totally honest, I am not 100% sure that it was intentional (there is a story here too... just wait). But that didn't matter, because I made a split decision on my response..
The Duc 'fell from the sky and landed in a dramatic fashion on the floor, breaking apart into D-U-C parts'.
J-man looked surprised. Intrigued. I put the Duc pack together (hastily) and made the Duc start to fly. I said "shoot it!!". He shot again. And again, and again. I switched it up, fixing the Duc, giving it to him and taking the gun. J-man protested (he likes the gun) but then I shot the Duc. It took him a second or two, but then he had the Duc fall down from the sky in a J-man-like-dramatic fashion, breaking apart into D-U-C parts.
J-man grabbed the gun away from me and while I was trying to reassemble the Duc, pulled the trigger. So then I fell down in a dramatic fashion, groaning and making "you got me" noises. Much hilarity ensued. We did this over and over, Duc and Mommy dying repeatedly dramatic deaths. I called Daddy up. Soon, he was also dying in a dramatic fashion on the floor.
Then I managed to sneak the gun from him (sly mommy) and shot the J-man.
Who fell on the floor in a dramatic fashion, making his own groaning noises.
Back and forth we did this.... honestly, probably 25 + minutes.
J-man was playing with us. J-man was turn-taking with joy and glee. J-man wanted to keep the party rolling.
And in the last 5 minutes of this play, spontaneously, with no prompting done or needed, he started talking to us.
"My turn" "More please" "Shoot" "Your Turn" "Duc"
Commanding us to continue!!!
Are you excited yet?! Freaking out?! Well, oh, it gets better.
The chattering continued all night. Not all words, or words we could understand, but intentional directed vocalizations to us. Lots of requesting for interaction. We responded with intention, even those things that didn't sound like words. We treated them like words. And then later that evening, J-man brought me the k-less Duc again, the gun in his hand. Our new game continued!!! Willingly and child-lead, with no persuasion on our part, no "forced interaction", no pressure to perform.
This is the true beauty of the Communicating Partners approach. Before, I might have pressured J-man to say words for the events: "Say Duc... Say gun... Say my turn". I might have made my participation conditional on his talking, or turn taking, or interacting in a way that I required. I might have made him give up the gun before he was ready, before the game and the interaction had more value than keeping the gun. And he would have been gone.
But I didn't. I was patient. I didn't have a GOAL in mind. We just let it happen, scaffolding new ideas when he seemed open to them, and let it evolve. And we had fun. The kind of fun you cry about later.
I tried to capture some of it on video, but all I got was this little piece. (I swear, we should just wire up the house Big Brother style)
Oh, and the last bit of the story? Remember how I said that I didn't know if J-man intentionally shot the k-less Duc? Well, get this. Two days ago I bought Disney's Beauty and the Beast. We watched it yesterday morning during breakfast. He loved it, even tho there are some pretty scary parts. And last night, after bath, and before bed, he asked for "beest". So we sat down and watched the first 10 minutes of the show. And in that 10 minutes, Gaston (handsome bad dude) shot a duck!!!
So anyone who thinks J-man isn't paying attention, or able to process, generalize, and reapply concepts to different situations: Think again.
(And yes, we are going to have to really watch what he is watching now)
(Warning: Philosophical rant ahead. Proceed with caution. And wine... lots of wine.)
This situation with the school district has me quite in a funk.
F-U-N-K
It isn't entirely about the conflict, although certainly that is the nexus, the center round which the funk rotates. It is hitting me quite hard, this idea that we are on our own on this. I guess I had this illusion that everyone in a helping profession actually wants to.... err... help? And maybe they think they are, in some twisted "we know better than you and your opinion is irrelevant" kind of way. I can't even wrap my head around their reasoning, it is so foreign to me.
And to be honest, their reasoning doesn't even jive with their policy and their own initiatives. Clearly, based on website and literature from our district, preschool inclusion is suppose to be a "focus"...an ideal they are pursuing, striving for. Indeed, while googling 'preschool inclusion' I ran across a site devoted to the idea of preschool inclusion. Ironically, the director of early childhood at my district had even commented on the article (weird irony, I know). I'll protect her identity, but she said in part (in relation to the difficulty in training, organizing, and supporting preschool inclusion, which they strive to do... italics mine)...
".... However, the comments from our partners (in the community) always tends to be that they need more support, a teacher full time or a para full time. Even the para model has been met with a lukewarm response as our partner programs want licensed teachers. Some of these models are very expensive and we are limited to the number of slots they will open for us (for good reason with their size limitations, too). As much as we do to train and collaborate it still feels like the old "your kids" versus the "community kids". "
Clearly (while I hate to admit it) the director is really frustrated with what she sees as an inability of the community preschool programs (be they private or public) to work with the district in a meaningful way. I get that, for sure. Change is hard for any system. Of course, there is a hesitancy to invest the money in providing the support. A full time teacher or para is pricey (a worthwhile investment in my eyes for many reasons, but pricey nonetheless). And part of the frustration stems from the reluctance on the part of the community preschool staff to be a full partner with special education, I am sure.
Except, of course, our preschool wants to learn. They really, really do.
And we, the parents, want to collaborate. To be part of the solutions. We really, really do. We have a successful home program that we would love to tell them about, to get them to try. We want to tell them about him, and what we see as his real needs. We want to be involved in the solution to the problems in the classroom, and as we are the experts on the J-man, we should be.
So I am not sure I buy the "your kids" vs "community kids" beef. When we have a willing preschool, a willing family, and a desire to support J-man in his community setting but the lack of support to really help him progress, the district's answer is to segregate him. Not to build skills here, provide support and opportunities to expand the practice of these teachers in the community, skills they might just use down the road, with the next 'J-man'. Nope, just pull him out: it is quicker, easier, and cheaper.
There is this disconnect between the ideals espoused and the practice in place. It is like those people who have their corpus callosum cut, resulting in the hemispheres of the brain being separate and unable to communicate with each other. Each side operating on a completely different frequency, and neither side recognizing or communicating with the other. Literally, the right side doesn't know what the left side is doing.
(Note: I used the words "funk" and "jive". Can you guess the era I was born in?)
One of J-man's all time favorite foods ever are cookies. Specifically, chocolate chip cookies (preferably straight from the oven).
One of my all time favorite foods ever are cookies. Chocolate chip cookies... straight from the oven...
So here we are, J-man sharing a cookie with me. You will hear him right at the beginning ask for (and sign) the cookie, which has just arrived at our table for an after-meal treat. (Sorry for the awful videography)
Clearly, as this video shows, I need to get on Weight Watchers. But I am so proud of my J-man, sharing his favorite cookie, however little the amount!
I really want to talk about IT. I really do. But for now, I cannot say much. I can say there will be another meeting. A meeting with more people, the same people and different people. Important People. And until that meeting, it would be unwise to talk about IT here. You know, just in case They are reading this. And They might be... who knows, maybe They are trying to learn more about Us. About who we are. About how far we will go. And if I talk about IT here, They will know that we will go all the way, as far as we need to, because our son is worth it.
So, of course, I can't talk about IT.
Instead, I might talk about how we have started re-examining our committment to the public school system. How this system is appearing to be more and more broken. How we fear for our son in a system that fails to protect their children, their students, and may fail to do the right thing (yep, that's our district! Seriously, people, there is NEVER an excuse for this type of hateful behavior; I don't care what your beliefs are. Teaching compassion anyone??)
But I think I will just close here with two pictures of the J-man, because he is cute and full of promise.
