Monday, November 22, 2010


A scene from our day:

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. 

And then J-man sets me back on course.


Tuesday, November 16, 2010

On "Getting It"

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.

But I think I "get it" now.

I hope I do.  Or at least I am trying harder.

Sunday, November 14, 2010

SNBH Question of the Week

So, I have decided to join the fun with the Special Needs Blog Hop Question of the Week.  I have never done this before, so be gentle with me...


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! 

Monday, November 8, 2010

Bathtime Is Playtime

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. 

Thursday, November 4, 2010

A Green Flag Parent in a Red Flag World

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 doProfessionals 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.


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. 

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

Monday, November 1, 2010


Happy Halloween Everyone!!

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

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.

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... 

J-man is going to show us all!


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