Tuesday, September 28, 2010

We Interupt This Irregularly Scheduled Freakout....

...for a quick video!

You know you missed the J-man in all his glory! 

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?

Monday, September 27, 2010


IEP Alert Level:   HIGH
(Update to post below)

So.  IEP meeting today. 

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 :)

Saturday, September 25, 2010

Play to Talk: An Example

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.


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.

Tuesday, September 21, 2010

Review: Play To Talk by Dr James MacDonald & Dr Pam Stoika

(Please see my brand-spanking new review policy)


 Let me just say this. 

This sh*t works. 

I bought this book on Amazon.com about 2 months ago at the recommendation of some friends I met on the Natural Late Talkers Group and the Communicating Partners Yahoo Group.  At that time, with the recommendations from the Camaratas, we were searching for ways to better focus our efforts on building social interaction and communication.  From the back of the book:

Based on 30 years of clinical research, Play To Talk empowers parents with proven strategies and step-by-step instructions to help children of any age learn talk and develop essential skills for conversational relationships and social interactions.  This program turns everyday play sessions and social interactions between your child and family members into opportunities to foster language development, relationship skills, and positive behavior -- without taking the fun out of being together.

The basic principles of this book are the following:

Every day, practice the five strategies that have helped many children talk.

Talk about as much as your child; wait and take turns.

Talk in ways that are possible and interesting for the child.

Talk about your child’s immediate experiences and ideas.

Share control:
Allow both you and the child to lead and follow equally.

Be playful:
The more enjoyable you are, the more your child will talk.

Play To Talk is designed to be a very practical, very hands-on, and very approachable book for parents whose children are struggling with communicating, social interaction, and talking.  At 232 pages, it is a quick, easy read. It is written for the lay-person; for PARENTS. It challenged a lot of my preconceived ideas about "teaching" J-man to talk, and highlighted many of the 'bad habits' I had that were actual barriers to building communication with J-man.  The book provides examples and practical ideas to implementing these strategies.

I will admit that... as with every new thing we try.... I went into this with a skeptics' eye.  There are elements of the strategies that are difficult to wrap your head around.  For example, the idea of balance was a difficult one for me.  To talk about as much as J-man meant.... errr... not talking.  Or at least, not talking much.  But here's the kicker:  It worked.  It actually worked.  Within a few weeks, J-man has increased his communication attempts and his desire to communicate.  My mother, who had been away traveling and hadn't seen him in several weeks, was amazed at the difference in him. 

Play To Talk is a little hard to get your hands on.  It is offered on Amazon.com but when I purchased it, the book was out of stock.  I ended up having to purchase it used through one of the Amazon's affiliates.  I have since learned that contacting Dr MacDonald though his website is another way to get the book.  I also learned that his other book, Communicating Partners, has the same principles but IS in stock.  However, I haven't read that one.  Yet.

Two big thumbs up.

Thursday, September 16, 2010

A Letter to Myself and Others Like Me

You are not 'just the parent'.

It is easy to feel that way.  Like you are 'just the parent'.

In the beginning, you bought the books.  There are a lot of books.  Books about baby care, books about development.  Books about sleeping and eating and pooping.  Books about raising children.  And those books told you about normal.  About typical. You took some classes, joined some new parent groups.  You felt prepared.  Ready to take on the challenge of parenthood, to love and raise your beautiful child.  And you learned what you needed to learn.  How to change diapers, how to feed your child, how to soothe him. You were building your story together.

But then at some point you discovered you were not dealing with typical.  With 'normal'.

And the Fear and the Doubt set in.  You went out and found the experts.  Doctors, therapists, teachers, all well-educated, all professionals, and all very well meaning.  Experts.  And they are filled with Knowledge.  They know what to do.  They might suggest, imply that you don't.  That you can't, because you don't have their Knowledge.  You are 'just the parent'.   They'd take it from here.  Or maybe you feel you can't help.  The Fear and the Doubt have made you feel Powerless.

But I am here to tell you:   You are not 'just the parent'.

You are the Expert on your child!

You are!  You have been there from the beginning.  You know her smiles, his frowns, the things that bring her joy and what brings on his fear, sadness, or withdrawal.  You are keenly aware of her strengths and his challenges.  You are the keeper of her history and the foundation for his future.  You love, and because you love, you mean more to your child than any other professional can possibly mean. You must trust yourself.  Trust your instincts, that inner voice that calls to you. 

Now, you might need to read new books.  You might need to learn new skills, skills other parents don't have to learn.  You might need to parent a little differently.  Or a lot differently.  And the professionals you bring in to learn these new skills are there to serve you.  To foster your relationship.  To support you and your child, together.  The good, the very best professionals will do that. They will listen.  They will work with you.  They will hear what you have to say, and respect your opinion. You will be included. Cherish these people, because they are worth their weight in gold.

And don't let the others ... the ones to presume to know better than you... take away who you really are.

You are not 'just the parent'. 

You are the Expert on your child!

Sunday, September 12, 2010

Alert Level: Somewhere Between Guarded and Elevated

In the interest of full disclosure, it wasn't an actual IEP meeting. 

It was suppose to be a meet-n-greet.  An opportunity to talk about J-man, his progress, and some plans to start out the fall.  An opportunity to meet the new special education teacher coming on board, answer her questions, and hopefully get a sense that she was supportive for our overall goals.  I had also indicated to our case manager I had hoped to get a little more teacher time for the J-man, if possible.  Currently, he gets one hour of time a week.  One hour.  That is an "arrival at preschool, get acclimated to the room, work with J-man, wrap up and write a report" hour.

Doesn't seem like a lot of time to get anything really done, does it?

So I thought "well, it can't hurt to ask for a little more time, can it?"

Yes it can.  Oh yes, yes it can.

I could go into a play-by-play description of what happened, but I am not sure it would be helpful.  The meeting was going smoothly, the aforementioned activities talked about.  Updates were given.  And then, the question of the hours was brought up.  And that is where all Hades broke loose, my friends.

The case manager and new teacher basically told me that they recommended J-man go into a self-contained, special-ed only classroom at the district office, and that they didn't think he belonged at J&J preschool.  That an inclusion setting "couldn't give him what he needs" and "he wouldn't make adequate progress there".  In the special ed classroom he would learn to "follow simple routines" and they can work with him "more intensely". 

I was shocked.  It actually took my breath away. 

You see, we had already addressed these issues, not once but twice.  Our ultimate decision in the spring was to stay at J&J this fall.  They are wonderful.  They love him.  They truly want to do the best by him.  They believe in inclusion. We believe in inclusion.  And, most importantly, J-man is doing great there.  He has made progress all summer long.  Without any real district support whatsoever.  He follows classroom routines.  He is cheerful.  He likes his teacher.  No, he loves his teacher. 

Now, let me be clear about who these people are.  The case manager is also the district speech therapist.  She has had less than ten sessions with him, her last at the end of the spring session.  She hasn't seen him in three months.  And I now believe she has never had any faith in him, or in the process.  The new teacher is, well, NEW.  She has seen him... errr... never? 

Don't worry, I set them straight.  GEMM kicked a little butt.  There was absolutely no doubt whatsoever where we stood, and how utterly ridiculous I found the proposal.  The director and J-man's teacher from J&J wholeheartedly supported us.  Our private speech therapist was there as well, and gave glowing reports about the progress he has made over the past three months. (I will no doubt hear her opinion about the meeting itself on Monday).

Frankly, I am insulted.  Yes, insulted is the right word.  And devastated.  Devastated that the people who are suppose to work with him have no faith in him.  Or us. 

What do I do with that?

Saturday, September 11, 2010

Thursday, September 9, 2010

The Lengths We Go

Tonight, I taped a chicken nugget box together.

Running a low grade fever and feeling pretty uggie, I sat with my head in hand as J-man munched on chicken nuggets.  He ripped the nugget box top, handed me the ripped piece, and pushed my hand (with ripped piece) away.  I assumed he meant for me to throw it in the trash behind me, which I did.


The ensuing meltdown clearly indicated that I had misinterpreted his intention.  Recovering the ripped portion of the chicken nugget box from the trash, I asked him "What??".  He pushed my hand again, this time toward the junk drawer. Where the tape is.

"Fix it?"  I asked.

"Fe it?" he answered.

I showed him the tape.  He half-nodded. 

I said "Tape?"

He echoed "Ta pt"

So I taped his nugget box.  Poorly, apparently, because he took the ripped portion back off, handed it to me, and said "Ta pt" with a vigorous, disgusted whine. 

So I taped it well

I taped a chicken nugget box back together

Yep, never read anything about that in those child-rearing books.

Sunday, September 5, 2010

On Compassion

My submission to the TPGA site was very well received. Parents and professionals alike seemed to get what I was trying to say, and were open to and grateful for the message. Well, except one. Much to my dismay, one teacher had some very negative things to say. They didn’t seem directed at my piece per se. It seemed more like his/her comments were directed at special needs parents in general. While I felt the essay was about compassion for parents… a plea for understanding and grace… he/she seemed to feel like I was a) attacking teachers, b) excusing bad behavior, or c) all of the above.

I will admit this one commenter hurt me deeply. So much so, I am a little gun-shy even now to post this. See, I was perplexed. I didn’t understand how he/she got that from my essay. I reread it several times, trying to ‘hear’ what this commenter heard. I had a hard time even stretching it to where he/she went. And apparently, other commenters felt the same way as myself, not understanding why this teacher reacted so negatively and with such outward anger and hostility. The essay was an appeal for gentleness and compassion. Not receiving that was really a blow. It took me a while to process the whole event, to consider my response and decide what it all meant.

But I believe this teacher’s reaction actually proved my point. And not in the way you might be thinking.

Compassion is not easy.

Compassion is not simple.

Compassion is not only for the good people. The likable people. The easy people.

Compassion is also for… and possibly most needed by… the angry people. The difficult people. The ones who are not nice, or amiable, or positive. Compassion is needed by the people who don’t ask for it, may not appreciate it, and may not return kindness with kindness.

Compassion is the deeper understanding that all humans suffer. We all have pain. In the practice of compassion, we need to take ourselves out of the equation. It is not about me anymore. It is not about my hurts, my sadness, my pain. To practice compassion is to set those aside, and be open and accept that others' pain is real and true, and valid for them. This is not an excuse for bad behavior. Bad behavior must be confronted. Rather, having compassion allows you to deal more effectively, more calmly, and with more grace, the misbehavior of others.

It is SO MUCH easier said than done. When I read the teacher’s comments, I did want to criticize. I did want to lash out. I questioned whether I should keep the post up, whether I could emotionally handle the negative comments. The teacher’s negative comments… this one person… weighed heavy on my heart. The instinct, then, is to react with my pain. It is so hard not to go there… to go to the Angry Place.

However when I took the time to read between the lines, to look past the words, I saw someone who must be in pain. I see in her words anger, defensiveness and hostility. To lash out, to spend the time and energy to post angry words, words not meant to build bridges or foster understand… that must come from a heart in pain. Just like some parents, maybe even myself someday.  Disappointment, powerlessness, and a lack of peace? I do not know. But I do believe it wasn’t from my simple little essay on being gentle with parents.

So I have compassion for this teacher, for what she suffers. I hope that she finds a way to have peace and compassion for all the people in her life, even the people who upset her, anger her, come at her with fangs and claws. Whether she deserves it or not doesn't matter.  Indeed, I wish others (parents and professionals alike) to be able to find peace through compassion. To do so is a gift to others, and a gift to oneself.

“If you want others to be happy, practice compassion. If you want to be happy, practice compassion.” -- the Dalai Lama

Thursday, September 2, 2010

The Thinking Person's Guide to Autism


About one week ago (at the urging of a friend), I decided to submit my Open Letter to All Professionals to The Thinking Person's Guide to Autism.  I have followed this site for a while, and have a lot of respect for the people who run it.  I had heard from my (RL and Internet) friends that it was a good piece.  I thought I might be worth a shot.  All they could say was "no thank you". 

And I am honored to say they accepted my submission!!! They posted the essay two days ago, and you can't know the thrill I got knowing it was out there.  Outside of this little blog and my little cloister of friends and followers.  What I wasn't prepared for was the overwhelming response I've had to the letter.  Apparently, it struck a chord with parents and teachers alike.  I have had tons of lovely emails from people who have really responded to it. 

I am deeply honored and thankful to everyone who has passed on words of appreciation and friendship.  It means the world to me. 

And for those new visitors to the Crack, welcome

Wednesday, September 1, 2010

The New Groove

Piaget refers to this phenomena as Disregulation leading to Regulation. 

I refer to it as J-man going from a complete, total, mind-blowing pain in the tuckus.... and then some neurons meeting some other neurons, making friends...... and then J-man suddenly has a jump in skills.

This happens every four to six months, probably related to growth spurts and the like.  But I always forget that he has a total decompensation in his tolerance for anything and his overall behavior right before he makes a jump in skills.  Until, of course, he makes the jump.  Then he mellows, starts doing stuff he has never done before (good stuff, too) and I go "ahh...DUH!".  Of course, by then I have aged another 5 years and added scores of gray hair to the noggin. 

Imitation has always been a bit of an Achillies heel for J-man.  He hasn't done it... or done it consistently. Since imitation is such an important social skill (it is the sincerest form of flattery after all), and fosters language and speech development, J-man not imitating is BAD. 

And now, suddenly, imitation explosion

He went crazy at speech today.  An imitation fiend!  Miss S was completely floored.  And he showed curiosity and interest in what she was doing, how she was doing it, and in copying her.  He tried more words and word combinations than I have ever heard him try to imitate.  Now, to be honest, this is where I think we are really seeing the apraxia kick in.  I mean, at times it is just a sound with some inflection thrown in.  Sometimes he just does the first part.  Sometimes he sounds like he has marbles in his mouth.  But hey, he is trying!

Imitation abounds at home, too. Let's take The Emperor's New Groove.  Hands down, it is the new favorite.  And he copies the movie scene for scene.  He knows the words... in his head at least.  He has never done this before.  NEVER.

So get this.  Here's the scene:  One of the main characters (Paucha) is returning home to see his family.  His wife and children are at the doorway, measuring the kids height on the door jam and marking it down.  As Paucha arrives, the kids run to him and hug him in greeting. 

Tonight, J-man grabs me, pulls me to the living room and makes me sit down next to the wall.  He hands me a crayon and stands next to the wall.  I catch on (since I have now seen the Emperor's New Groove about 1000 times) and mark the wall. 

But oh no, it doesn't stop there. 

He then runs away... about 6 feet.... turns around and runs back to me, throwing himself in my arms for a big hug. 

Seriously, we are re-enacting the reunion scene.  OVER AND OVER.

And we did it several times before I called my husband to come into the room "at the right moment".  So, after marking the wall, Daddy walks in and is delivered the Hug of the Century.  Like Daddy has been gone forever. 

And then Daddy promptly pushed out of the room so we could do it again.  And again.  And again.

All the while, he is engaged with us, interested in being with us, smiling, giggling, and laughing.

Makes all the butthead days worthwhile.


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