I have had a little bit of writer's block. Or is it blogger's block?
Anyhoo...
So much has been happening, ranging from ugly viruses to Christmas holidays to work to everything J-man, that where to start and what to say has alluded me. And to be honest, it still does. So, in order to break this log-jam, I will just start with a little Christmas story.
We didn't know how Christmas would go this year.
Last year, J-man really didn't get the concept of presents. And Santa?? Who is that?? And while it was clear that this year he could identify Santa, I was pretty sure he didn't get the concept of Santa. What I wondered, though, was would J-man finally understand the concept of presents? That they aren't just pretty colored boxes under a tree, but that inside the package was toys?
J-man totally has the concept of toys. Daily we are bombarded with requests to go to 'Arget' for 'oys'. Every Day. His love of toys... especially new toys... has reached epic levels to wit we must nip in the bud lest we become financially insolvent. So I suspected that once he opened one or two presents he would get the concept pretty quickly.
And he did. By present #3. And he could have stopped... at present #3. Allow me to introduce...
Mooooooooon Baaaaase
J-man, Cousin A-man, and the MOOOON BAAASE
One of the few moments of interactive play between the boys.
Mostly, they fought over it.
Over the last few months J-man has become quite devoted to looking at toy catalogs. Quite devoted. Like reading a book, he would look through the pages, point to toys and want me to label them. His favorite, by far, was this Alien Moon Base and Rocket. So we took a chance... Grandma got the Moon Base and I got the Rocket.... and hoped that his devotion to the picture in the catalog would translate to toy-love at Christmas.
We had him at Mooooon Baaase.
His eyes were huge, people. HUGE. He insisted on opening it immediately, and from that point onward all other presents took a back seat to his Moooon Baaase. He wanted to make extra sure we knew what it was. He was very... VERY.. possessive of it. Many a battle was waged between J-man and A-man over playing with the Moon Base and Rocket. Sharing is not easy at Christmas. (How ironic)
But other than the occasional toy battle, J-man shone bright. He cuddled with 'Papa'. He went sledding for the first time with us. He was fully engaged in decorating the gingerbread house with 'Mumu' and A-man, putting candy pieces on the roof.
However, for some unbelievable reason, the Easter Bunny was. Explain that one to me.
The question of the year: How would J-man react to Santa this Christmas???
So we arrived at the Mall and worked our way to Santaland. As we rounded the corner, there He was. I had planned ahead, choosing a Tuesday morning on the hopes that it would be quiet at the Mall and have a minimal line to see Old Saint Nick. And I was right... the perfect situation to see Santa. No line. Same great Santa.
As we approached, J-man stopped in his tracks. I knelt down, pointed to Santa, and asked J-man, " Do you know who that is?"
J-man looked wide eyed and said "Ann-ta".
"Yeah,' I said approvingly, 'Do you want to go say "Hi" to Santa?"
J-man grasped my hand, pulled me in the opposite direction, and said emphatically, "Nooooooo!"
Okay. Message received. No Santa picture this year.
And then, J-man's preschool had a family Christmas party. And guess who showed up??
This is as close as J-man would get to Mr. Claus, but he was perfectly fine with him at a distance! And now we have a Santa picture this year. All is well with the world.
Really, believe me.... we don't promote violence. Really.
But... well... somehow, boys just know how to be boys....
This video was shot at my birthday party last week. The "battle" began spontaneously between my nephew A-man (the blond) and my J-man (shorter and not so blond), and after a minute of completely normal, appropriate boy battling with the very safe foam swords, I just had to try and capture the beauty. They loved it. I loved it.
I think I see some pretty good interaction and turn taking going on. What do you think? Oh, and although you can't hear it, J-man followed some "encouraging instructions" from the sidelines. The Cops and Robbers soundtrack provided for your pleasure (and to protect the bad influences.. ahem...lets just leave it at that).
J-man has really taken a keen interest in his cousin, which is just flippin wonderful. A-man is a little older (5) and filled with energy and great ideas, and J-man definitely is paying attention. As I have always known he does.
But really.... believe me.... we don't necessarily condone violence... but what is a little foam swordplay between cousins?
And it feels like I have shed the weight of the world.
Like I can breathe again, deep and easy.
Like I am free.
Until we cut them loose, I didn't realize how heavy and trapped I felt. Like I was slowly drowning. My hubby said our relationship with the ECSE department was like a relationship with an abusive spouse that you just keep going back to, hoping they will change. That things will get better. Or that you have somehow convinced yourself that you can't live without them. But you can...
He was right.
(Relish that confession, babe, it doesn't happen often ;)
As some of you are already aware, we have had some issues with the school district services. While I mentioned it on one or two occasions, lately I remained relatively vague about the issues. In part this was because we were in the thick of it and I wasn't sure of the outcome. However, through the magic of server-IP-identification, I also became aware some time ago that someone(s) at the school district have been regularly checking out my blog. I will confess... I am kind of amused. Heck, the Internet is an open forum and I do put it out there. And actually I have no problem with them reading my blog: I am proud of my boy and all he is doing! But I was... hesitant... to go into specifics about my anger, frustration and angst regarding our conflict. Not that I don't stand behind my blog... what I say here I proudly own... but you know, they don't need to know everything.
Of course, now that they are fired...
I will admit I've had some fantasies about writing this post. My hubby has been dying for me to tear the district apart, to name names and put it all out there. But now that it is here... what do I say? That they acted poorly, were manipulative and lied? Of course. That they have made inappropriate and possibly destructive decisions? Yep. That they have failed to listen to us or treat us as equal partners? Yep That they have failed in their legal, ethical, andmoralobligations to the J-man? It goes without saying.
We wouldn't have fired them for anything less.
But aside from telling the basic story in my letter, I have no taste for giving them much more of my time. Instead, I would rather focus on why it took me so damn long to see what has been obvious all along...
We don't need them.
In case you are reading this, IEP "team", allow me to repeat:
We don't need YOU.
We will do this all on our own. In many ways, we have been. You had a chance to be a part of something magical, something beautiful, something you could have been proud of. Something meaningful. If you would have just opened your eyes and really saw him...
You lose.
The system is stacked against families. The power structure leans heavily in the favor of the school district. Don't get me wrong. The law is built for us. But failing to follow the law carries few penalties and doing what is right for the child and the family is not necessarily rewarded. The ethics seem nebulous at best, and it appears to be fairly easy to convince themselves that they have the knowledge and authority to be the ones making the decisions. It is okay to keep parents in the dark about their options, because if parents know too much then they might challenge you. As a parent, this attitude can feel very paternalistic: Do what we say because we know best. It is our system, our programs, and if you don't fit or agree.... well, too bad, so sad. So much for the Individual part of IEP.
So we started with Hope. Hope we get 'the good ones'. Hope they will really see our child and work with us. We smile and try and cross our fingers and pray that they share our vision. And even as the evidence mounts that is not the case... we still Hoped. Maybe they will see him as we see him. Maybe they will....
And as Hope starts to fade... it is replaced by Anger. Anger that they are failing in their duty. Anger that they won't listen or maybe just don't care. Anger. We pay taxes.. have since we were 16 and probably will until we die. We have one child... only one.. and I think we have paid our dues. J-man is a citizen of the United States of America and our society has decided that ALL children deserve a quality education. They are not allowed to fail. This is J-man's right. They should feel ashamed, right to the core.
And under all that Hope and Anger is Fear. Fear about making the wrong decision. Fear about defying 'authority'. Fear about doing it all by ourselves... what an isolating, lonely feeling... How will we do what needs to happen for J-man? Why can't they just love him as we do? There is so much to love...
I was stuck by Hope, Anger, and Fear.
And amongst the chaos of this week... the lost Hope, the Anger, the Fear... I read this post by my friend Ange at Life in the Pumpkin Shell. The last line struck a chord in me so strong and clear it was like God himself whispering in my ear:
One gift allowed me by the spirits who guide me through...'Walk away when it feels wrong.'
Anyhow, the greatest Hubby in the world and the greatest Grandma-Mumu & Grandpa-Papa in the world got together and got me the coolest gift ever!
Yes, my very own iPad!
I had a hard week so they revealed it a little early. I have been jonesing for an iPad for quite a while. It just has so many cool features that we can totally use around here... surf the web from the couch, watch movies on a long car ride, play games, etc etc. Yes, it is a toy. But, to be honest, I don't have a lot of toys. Also, the iPad also offers A LOT for kids with special needs like my little J-man. Shannon Des Roches Rosa and Robert Rummel-Hudson offer a great commentary on the impact of the iPad for kids with special needs.
So it is a toy I can feel pretty good about all around. It is for me AND the J-man. Guilt assuaged.
That is, if he could figure out how to use it..... Hmmmmm
J-man has shown limited interest in the computer up until now. Recently he discovered the joys of YouTube, but just enjoyed watching and didn't show interest in trying to use the computer in any other way. The idea of the mouse alluded him. He just wasn't ready which is ok because he is only three and a half.
But what about the iPad?
Allow me to present J-man's iPad skills.
Game One: My First Word
In this game, he moves jumbled letters on top of each letter in the word. When the word is done, the graphic of the word "dances"
Game Two: Talking Santa
A pure game. You hit buttons to have Santa do different things (or have things happen to Santa). Try to ignore the sociopathic joy he gets from assaulting Santa with a snowball, and notice how he follows my directions and shows shared enjoyment.
I thought I might do another SNBH. This Week's Theme: What is a recent accomplishment that your child has made?
Anyone who follows me regularly knows the strides J-man has made recently. I view most of his daily strides as major accomplishments, but I decided yesterday's story was worthy of this topic.
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The "guys"
I was parked at the kitchen table working on one of my least-favorite chores: paying the bills. (Anyone with me on this one?) J-man comes running into the kitchen and grabs my hand, pulling me out of the chair and into the dining area. In his hand he was clutching three of his "guys": Superman, Batman, and the Joker.(He loves his guys) He looked me directly in the eye with this urgent need in his expression.
J-man said to me, " aAAh iIm!"
aAAh iIm?? What the....?
"What honey?" I said.
" aAAh iIm!" he said again, insistently. Clutching his 'guys' in his hands, J-man rubbed his fists up and down on his chest, trying to sign what he was saying. "aAAh iIm!"
I imitated his sounds and sign, showing him I was hearing him.
"I'm sorry hon. I don't understand" I said regretfully.
But he persisted trying to get me to understand. He didn't quit. He signed. He forced his words out, even though his mommy didn't understand. He hung in there.
I watched him, as frustrated as he was, looking for any clue that might help me figure out what he was trying to tell me. I watched his signing, listened to his words, and looked at his hands clutching his 'guys'. And suddenly it hit me like a ton of bricks...
"Bath time?!?!" I asked excitedly. He glowed with relief and excitement, "aAAh iIm!" with the sign for bath.
Persistence.
Some time ago J-man went through a spurt of avoiding bath time. He just wanted to play, and bath was just a rude interruption. At that time, we decided to try and make a game of it by putting his "guys" (and he has a lot of guys) on different stairs going up to the second level bathroom, and then had him gathering them as he went up the stairs to the throw his 'guys' into the 'pool' (bath) to go swimming. And he took to this like a fish to water (hehehe) and it has become a routine ever since. His guys get a bath. His guys go swimming, get washed and dried. He has once again embraced bath time.
How fundamentally frustrating it must be for J-man. To have these thoughts, these ideas, these words, stuck in his mind and in his throat. To know that communication is important, to know that he can't do it well, and to know that we adults may... no, probably... miss what he is trying to say. How does a three year old cope with that?
And yet, he persisted. He persisted in spite of the fact I didn't understand, in spite of his best efforts, in spite of how very hard it was for him. Yes, this time his Mommy figured it out, but in his world that is probably the exception more than the rule. And still...
J-man brings me his coat and thrusts it into my hands. Now, when J-man brings me his coat that generally means he is bored and wants to go somewhere.
So I said, "You want to go?"
He said, "Goooo. Caar!" He signed it, just to make sure I got it.
I said "Okay, we can go. Where?"
J-man remained silent as he put his coat on. I told him to get his shoes and socks, which he did. As I was putting them on I asked him again, "Where go?"
He just looked at me and smiled.
"Go Ice Cream?"I said. (This is the usual place we go when we need to Go)
"Nooooo" said J-man.
"Go park?", I said. (Oh please oh please please, not the park. It is 20 degrees outside.)
"Nooooo", he said again, emphatically, with a slightly annoyed look on his face. Really, Mommy, the park? It is 20 degrees outside.
And then it dawned on me.
"Target?" I said.
"Ar-get?? Arr-get!!", he crowed.
"You want Toys?" I asked.
"Oys Oys Oys!!!" he exclaimed, grinning ear to ear. Bouncing up and down. Fully satisfied at his ability to make his wishes known.
And off we went to Target. When we arrived and settled with cart in hand, I asked, "Where go?"
"Tataway", he pointed emphatically toward the general area of the Toy aisle. We meandered 'tataway'. I took a (purposeful) wrong turn. He grabs my hand and points again, "Go tataway!! Oys!!".
I may have lost my way a few more times (ahem), but we eventually made it to the Toy aisle. J-man directs me from lane to lane, carefully examining the toys. I said "Small toy buddy", hoping it means something to him because let's face it, I don't wanna spend $50 on the Imaginex Dragon Castle, even though I know he has eyed it before. But lucky for Mommy's pocketbook, he was content with a Playmobile Knight.
And this scene, dear readers, would have never ever ever happened a few months ago.
Every few months I have this uncanny ability to totally panic. It occurs to me that we aren't doing enough, or the right things, or enough of the right things. I make calls. I peruse the Internet examining my options for therapies or new techniques or some other new information that might help. I worry and sweat and get myself all twisted up.
I rarely write about my job. It's not that there isn't a plethora of material there. Many times my work environment can put the 'D' in drama. I just feel that this space is more about my parental journey rather than my professional one. However, there are times when I become acutely aware of the bi-directional influence the personal and professional have on each other, and I guess this is one of those times.
Yesterday, my primary went home.
To clarify, a "primary" refers to a patient... in our case, a baby... with whom a nurse makes a commitment to work with throughout the patient's stay. In essence, you are assigned that patient every time you work. Now, in many places within a hospital, there is no need for such an arrangement. Most hospital stays are meant to be short term and brief. Indeed, insurance prefers it that way. But the NICU is different. Our babies will stay with us for weeks, often months at a time. For many babies, this stay is marked with extreme critical needs and an ever-increasing series of complications. Primary nursing is meant to give our babies some nurses that can provide consistency, an ability to maintain an 'arc of the story', and a means from which parents and other family members can develop a meaningful relationship with at least one consistent face. Additionally, primary nurses tend to become strong advocates for both the patient and the family. Many times, a primary nurse becomes the patient's voice in a complex world.
We take it pretty seriously.
I like to take primary patients, although I am not always willing to do so. It is a major commitment. You have to be willing to stay with that patient through discharge. You have to be willing and able to work with the family. You have to commit to whatever happens with that patient, and it can range from beautiful to tragic, sometimes in the same week. So whenever I do take a primary patient, it is usually after a lot of thought and contemplation.
Or, in the case of Baby F, I decided during my first 12 hours shift with him (I admitted him). Sometimes you just gotta jump into the deep end of the pool, ya know?
Baby F was a micropremie, the smallest of the small and youngest of the young. To give you some perspective, Baby F was born under 500 grams. The can of Chunky Chicken Noodle soup next to me is 527 grams. Yeah, that is small. And he was young (gestationally speaking), skirting the edge of viability. One third of babies born at his gestation today do not make it to discharge. And of the ones that do, they often have major medical complications. To primary a baby like F is setting yourself up for a long term gig. And it was... Baby F stayed with us over 100 days.
But then, I got to have yesterday. I got to see him leave with his loving parents, on minimal medical assistance and as far as we can tell today, his future looks very bright. And I got to be a part of that. I will, forever and ever, be a part of that family's story. Years and years will pass, and he will grow up and be who he will be, and at major milestones (graduations, weddings, etc), I will be in some small way remembered. I will be remembered as I remember exactly who came to J-man's delivery from our NICU (Miss L and Miss K), even though they were only there for 6 minutes... okay, maybe 7... as I remember every person who has worked with him, who has had some impact on our lives. They are a part of our story. It makes me ever more aware of my responsibility and duty to these families.
I think being J-man's mom has made me ever more sensitive to the impact that I have on families. I think I "get it" more than I did before. Sometimes, that just means I know that I don't "get it" at all. I judge a little less, have a little more compassion, and understand at least in some way the crushing weight that this experience can be for a family. I am not sure that I could have gotten here without J-man... I think one believes that they "know" what it is like or what they would do if it was them in that situation, but they don't You never do. You just can't. You just need to go through it to even begin to truly "get it".
My Open Letter featured on The Thinking Person's Guide to Autism has gotten some amazing... I mean AMAZING... responses. Two school districts from opposite ends of the country wanted to use it for teacher training. A hospital in Canada the same. I have had many people repost, many emails of appreciation, and I have been a little shocked and deeply honored. But as I look back, while I did write it as a parent of a special needs child, I think I also wrote it as a professional. It was as much a letter to my old self, "pre-Jman", who maybe didn't quite appreciate my role in these families stories. I didn't understand them.
The Question: Tell us a funny memory involving your child.
I am going to share two. The first happened this summer. I am not sure why this memory strikes me, but it is a great memory. Our friends were visiting from out of state, and we were celebrating a birthday of one of their kids. The whole group of us (house of 9 people!) were sitting around the table having birthday cake. I wasn't sure if J-man would eat it.... he has issues with new food, even if it is yummy stuff like cake. He has trust issues. So, we gave him a small piece and figured what will be will be.
Good food and good conversation were flowing and to be honest, I was paying very little attention to J-man. I would imagine he might have been trying to get my attention in his subtle, non-verbal way. Or maybe not. Who knows.
Anyhoo, we were munching and talking when... out of the blue... J-man exclaimed "CAKE!" and pointed directly at the cake. For a split second the table fell completely silent, and I looked at his plate. His cake was gone.
So, apparently, J-man likes cake. And wanted more. And got more, immediately.
That is my first really clear memory of J-man doing a spontaneous verbal request. It always makes me smile.
My second memory is really just a fun video from when J-man wasn't even one, and before I knew something was 'developmentally off' (although there was a seed of doubt). It is right before Christmas, and he is laughing at a video. I just love the sound of his laugh.
Now, a question for you all. I am curious... who are you? Except you, mom... I know you read. And a handful of my friends... but what about the rest of you? I would love to know who you are. If so inclined, drop me a line and tell me a little of your story. Or just give a hey-ho in the comments!
WARNING: Three year old boy in bathtub. No 'naughty parts' seen, but if you are a perv who gets off on watching a three year old in a bathtub, bugger off.
I just had to post this short video of J-man in the bathtub. We are playing "the lion is chasing Buzz and Woody". (You might wanna turn your sound down just a tinge, because it is very echo-y. And my voice is obnoxious.)
Now, this is a pretty good example of the CP approach, and yet I fail miserably in one area: Matching. Clearly, I am overtalking him. I really should have minimized my words and word combinations a lot more. But he is keeping up with the action okay. This is the first great example I could get of where he is at in his pretend and interactive play. This is pretty typical for us... he can take it out one or two ideas, but it sort of stalls there. But, given we had NO pretend play three months ago, I call it a win.
The other part I love is how much he is watching my face for my reaction. He is really enjoying my over-reaction to the lion. And did you notice how he wanted to keep it going by telling me to have the dolls go "that-a-way". Pretty darn cool.
Last May, I posted an article written by Dr. MacDonald called Red Flags vs Green Flags. I find this ironic and kinda funny because I had discovered this piece well before I knew anything about Dr MacDonald and Play to Talk/CP. It had been posted on another site, and to be honest, it just spoke to me.
I thought of it again this week after talking at length to a friend of mine dealing with some tough issues with her child. She was very discouraged about the messages she was getting from people working with her child. They were highly negative, and most certainly do not match her (or mine for that matter) perception of her child. Whenever she talks about something that is new and positive, she seems to get the "Yeah, but..." response. You know, it goes something like this...
"Yeah, but really he should be doing X, Y, and Z... and well, he is only at C, D, and E...(insert dismissive shake of the head)"
"Yeah, but he never does that at school... and really, he is too far behind his peers to catch up"
"Yeah, but .... (and then that weird look that says they clearly think you are in denial about how terribly, awfully disordered your child is and really you should just come to grips with their assessment of his skills)
The thing that just killed my friend (and me too, for that matter) was that it seemed to her that even suggesting that her child was making any progress as akin to her being in denial about how bad he was. When she spoke about progress at home, or how he could do certain things in other environments like church or daycare, they doubted her. She felt dismissed, like the progress she was seeing was not real because they didn't see it. When you are a parent of a child with special needs, it can feel like you are bombarded with negative messages about how your child is lacking.... how they are "less than"... how they (and you) are failing. It can make you feel alone and powerless and unsupported.
It is very hard to be a Green Flag parent in a Red Flag world.
So I posed this question to the Communicating Partners group: How do you deal with the Red Flag people? You know, the ones who say "Yeah, but..." whenever you say something hopeful, or talk about amazing progress, etc etc... Who always seem to look at deficit instead of progress? Who just can't be positive, or must temper every positive thing with something negative? Like being hopeful and focused on the positive is a disease?
And Dr. MacDonald responded. I felt like I had to share it. Here is (in part) his message to us parents:
Believe in Yourselves More than Professionals!
I say further that you need to do what evaluators only rarely do-- and that is focus on what the child can do. Professionals often seem to think that to justify their job they need to identify all kinds of mistakes your child makes. I claim that your child does not make mistakes, they are developmental growth steps. There are no mistakes, just practices for success.
Professionals would go much further with our children if they would take a developmental approach by identifying what the child can do and have him do more of that. Stop putting yourself down because you have a child doing less than same-aged peers. That does not make him wrong, and it does not make you wrong.
How often do you feel wrong when someone accuses your child of being wrong???
Don't be blown away by negative evaluations any more than if someone said you have the wrong kind of car, or dress or house. Be proud of what you have done for yourself. That will help your child be proud of what he can do. If he is not proud, he will do less and believe less in himself. (Attitude matters!*)
Realize your child is learning from you all the time and he is learning much more than what you say or try to teach him, he learns how to believe and think by watching you.
STOP BELIEVING PROFESSIONALS KNOW MORE THAN YOU DO ABOUT YOUR CHILD. THEY DO NOT.
In fact they cannot know who your child is and what he does and can do unless they watch him with you and get a thorough report on what he does at home.
Also, professionals are usually asking the wrong questions. They seldom know much about early development and what children need to do before they're in school (and how to encourage it*). Skills such as social play, imitation, turn taking, deliberate communication, initiating, responding. listening, and many others are seldom evaluated and yet they are the keys to learning and communicating. Realize that you often buy into a system that is keeping your child down. Start seeing how and when you are doing that, such as when you push your child to do things he is not ready for, making him avoid you and others by acting in ways he cannot try to do.
Be more focused on what your child can do and get him to do it more. At the same time, focus on what you do when he is performing well - keep doing it.
Be sure he is your partner more than your student. And ask yourself: WHOSE CHILD IS HE OR SHE ANYWAY?
When was the last time a professional gave you a pep-talk like THAT?
I adore Dr. MacDonald. Thank you!
* my comments based on other posts from Dr MacDonald
Ok, the day after. But I have to tell you all about our Halloween night.
So, as noted in the previous post, J-man had a choice between being Superman or Spiderman. Now these options were picked by me because a) they were easy, b) they were cute, and c) they were easy. I knew that J-man didn't really get the concept of Halloween, so I figured he wouldn't care.
Oh silly Mommy, how wrong you are.
The day before Halloween, we made a trek to Target for Halloween candy...thus guaranteeing that it would only be in my house for 24 hours before the big event and decreasing the likelihood of it ending up on my thighs (I failed, by the way.). Once there, J-man took charge, commanding me to go "Tat Way" until I wove my way to the costume area. Amongst the sea of sadly picked-over costumes, J-man found his Holy Grail:
Dash from The Incredibles
Sucker!!!
So, we were set for the Big Event. Our neighborhood is CRAZY for Trick-or-Treating. Some family several blocks away runs a hayride through the neighborhood, bringing kids from one area to another. There can be 10+ kids on a trailer and as they arrive at our circle, they swarm like angry bees, running from one house to the next. The neighbors go crazy with the decorations, from cute to spooky. It is a Big Event here.
Frankly, I didn't know how this would go. He woke up from a late nap in a foul mood, which didn't bode well for the festivities. But we donned the Dash costume and headed out, fully expecting to do maybe three houses before he had enough.
Spooooooky
Oh silly Mommy...
He LOVED it. The first house was a bit scary because he had no idea what was going on. There were kids everywhere dressed in costumes and running around, and he was a little intimidated. But he really caught on quickly to what to do: Ring the doorbell, hold out your bucket, and say Trick-or-Treat.
Or as J-man says it: EEE Ru EEEeee
Which he DID!! Over and over again! We must have done 15+ houses before we called it a night. J-man would have kept going too! My hubby and I were very pleased, and very surprised. But I shouldn't have been...
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.
Ok, here is the back story: J-man has taken to imitating TV and movies. Instead of allowing him to do this alone, we are full-bore into playing with him in this medium. Heck, if you can't beat'm, join them. So here he is watching Aladdin. For a time he wanted us to fly him around on our arms like he was Superman during the flying carpet scenes. However, now, Daddy has developed a new flying carpet routine.
Watch the fun:
I think he is doing a pretty kick-ass job of communicating. What do you think?
To discuss getting a few more hours of teacher time. A little more time. To give J-man what he needs to be successful. To .... hmmm..... try harder.
I can't go into details right now. Needless to say, though, it did not go well.
Here is what I can tell you. No one believes in J-man but us. No one is willing to have faith in him, that he can succeed where he is. One of the school district "team" members even had the nerve to say to me "What... do you want him to fail???"
Excuse me?? EXCUSE ME???
So here is my response to you, "team" member.
Why do you assume that he will fail? Why, when the question of where he needs service, and what kind of service it is, do you assume he cannot succeed where he is? Why do you have no faith in the ability of a well-crafted plan and a devoted team of people? If we provide what is appropriate, why do you assume he can't?
This is starting to become a fundamental issue that I am noticing: The focus on deficit instead of potential. The focus on everything that is wrong or bad or disordered instead of what is possible, on strengths, and on rising to the occassion. You know, if you have low enough expectations, you can always meet them. But we insist on high expectations, and apparently that is a problem. Oh, and that we are involved, that we have opinions that differ, and expectations for performance.
*************************
Update: Title Change
My dear friend JK emailed me after I posted and took exception to my title "Faithless". She said (in part) the following:
...I found the title of your writing interesting because in my eyes, it is "faithful". Faithful to the fight and to the life and future of your son. Don't give those who are say ignorant and negative things that much power, credit or even a headline. Shout it from the top of your lungs how much you love and adore your son and how every inch of him is worth any frustration coming your way. I can't imagine your frustration, but you will prevail. You've never given yourself the option not to.....
You are most certainly right, JK. Title changed, and negativity will never get top billing again! Thanks, I needed that gut check :)
You asked for it, Lynn. Well, you and a few other folks who FB and emailed me.
I will confess, here and now, that I am a newbie to the Communicating Partners/Play to Talk approach for increasing interaction and communication. So recognize that I am by far NOT an expert, and take what I have been doing with a grain of salt. I would recommend, however, that if you have real interest in learning more, join and check out the Communicating Partners Yahoo Group. The admin there frequently posts different essays about these techniques that have been very helpful. Plus, it is just a great, supportive group.
(Note: Everything I talk about today comes from the Yahoo Group and Play to Talk by Dr. MacDonald. All credit to him!)
First I will talk about the fundamental premise of this whole approach: Entering the child's world. And let me tell you, it is easier said than done. All children (especially children with communication problems) live in a world of sensation and action. We adults live in a world of thought and language. We cannot successfully bring our children into our world without first entering their world. Children (all children) build understanding through their ability to accurately sense the world around them and to physically act upon those sensations. That is the foundation of our cognitive "house". Children with developmental delays often have issues with both their sensory processing and their ability to respond to those sensations. Their sensory world is confusing, disorganized, and inconsistent. Therefore, the idea is for you to become a guide who goes from our adult world, enters their child world, finds a way to interact with the child in a way the child can understand, and then gradually bring them into our world by being an accessible, fun, and interesting partner.
Too wordy? Whew...
So, there are five core strategies to get into your child's world. They are as follows (directly from Dr MacDonald):
1. Balance- do only as much as the child then wait with expectation for him to take a turn. (and sometimes the waiting can feel like forever.... take ANY behavior, sound, etc to be a turn at first)
2. Match-- act and communicate in ways the child can do now (don't speak in sentences if your child only has single words)
3. Respond to the child's actions and communications rather than always telling him what to do. (Don't teach... be a play partner)
4. Share control. Be sure each of you leads half the time and try to reduce your questions so you do more of showing him a next step. (Questions require answers. That seems too much like work to me, too)
5. Be playful and emotionally attached-- make the interactions fun and interesting for the child. Enjoy what he enjoys!
So, here is an example of an actual, real, honest interaction I had with J-man that is an example of these techniques. I posted it on the Communicating Partners site as a "Funny Story", and a member (Carolyn) provided me with the wonderful analysis on how it was a great example of this approach.
THE FUNNY STORY:
So, last night while making dinner I accidentally splashed boiling water on my naked foot. (That is not the funny part) So, as you can imagine, I am in a bit of pain, on the floor of the kitchen with a cold washcloth on my foot. J-man comes in and sees my grimace and gets a little worried and upset. I told him "mommy oiwee, hurt". He touched my furrowed brow and my grimace, made his own grimacy face, and then he took both of his hands, put them on my cheeks, pushed my cheeks up and told me "mile!" (smile).
Of course at that I DID. (Smiled, that is)
Then I grimaced again (on purpose) and he pushed my cheeks up again and said "no no. MILE!". We did this a few more times... it became a little game.
And here is Carolyn's response:
The loveliest thing about the story is how your son showed empathy...how very much connected you two were with each other...a beautiful thing and the central key to a relationship, in my opinion! The story also beautifully illustrates all of the CP strategies!
Matching: You matched your son from the start. After noticing his concern, many moms would have said something like this: "Oh, J-man, Mommy hurt her foot. I spilled HOT water on my foot, and it burned my foot, and it felt really bad! Thank you so much for your concern. Here, come give me a big hug and kiss to help Mommy feel better..." Your son probably would have been able to understand everything you said, but it would have been way too much for him to say himself. Instead, you used his language and simply said, "mommy oiwee, hurt." Then, for the remainder of the interaction, you continued doing and saying things that he could do or say, making the interaction both possible and meaningful to him.
Balancing: This was obviously a "textbook" illustration of balance in action! You each did and said about as much as the other, going back and forth for several turns. Fabulous!
Sharing Control: Again, a beautiful example of this strategy, with neither one of you taking over the conversation. It would have been very easy for either of you to have dominated the interaction, either you as the "victim" or him as the one giving you consolation.
Being Emotionally Playful: You two turned a "tragic" event into a fun game that got you both smiling! And all of us along with you!
Sensitive Responsiveness: You sensitively responded to your son's communications, beginning with your response to his concern. And even though these strategies are supposed to be the "adult" strategies that we can all use to help our children become better communicators, your son was using this strategy beautifully with you, sensitively responding to your pain! Very sweet.
It seems simple, but it isn't. Not at first. But the rewards are very sweet.
