Epic Fail

Okay, maybe not EPIC, but I have been a bad blogger.  I haven't posted since October 13th!!!  And you will have to wait a bit longer.  The truth is I am wiped after work and J-man. By the time I have the time, I have no words.  I also need the pillow.  Sweet, sweet pillow.

I will make it up to you, I promise.  In the meantime, a picture of J-man with some pumpkins.  Enjoy!

How to Know When Your Autistic Kid Is Potty-trained

We walk into the house after an obscenely long commute home from therapy.  J-man carries his chicken nugget bag in like it is gold.  He is ready to eat, now!  I run to the kitchen to fetch a plate and ketchup as J-man sashays up to the table with his Golden Arches prize.  I do this strange, exotic, weaving dance as I quickly deposit plate and ketchup on the table and hoist his rear into his chair.

I have to pee.  Bad.

As I sprint to the bathroom, J-man screeches at the upper range of his vocal cords, "'Lion King!!!". 

(In the spirit of full disclosure, I must confess that The Lion King is the new favorite and has been dinnertime viewing for the last week.  Yup, Mother of the Year.  Chicken nuggets and TV, the American way)

Lucky for my bladder, Lion King is already in the DVD player and ready to go.  One push of a button and we are off to the races!   And boy, did I race! 

Just as I get "settled in", I hear the thud of little feet heading toward me.  Crap, J-man is coming to pee too!!  Will I get booted... midway, so to speak...  or will he be willing to use the potty chair?  I offer a silent prayer to the Goddess of Kegel Muscles as he comes barreling in.   My prayers were heard....  he chose the potty chair. 

Just as his bum hits the plastic, however, the beginning strands of the Lion King flow into the bathroom.  J-man's eyes go big and round. He jumps up and "runs"...  underwear around his ankles.... to the living room.  I quickly follow (fully clothed) and tell him "No worries... I will pause it.  Go potty, honey!". 

"No potty!!"  he says.

"Yes, go potty!  You just went in there to go!  It's ok."  I say.

"NO POTTY!!  LION KING!", he shouts as he pulls up his pants. 

"Okay, okay," I concede, silently consoling myself that maybe he didn't have to go that bad.

J-man settles on the sofa, chicken nuggets forgotten.  Feeling much more relaxed, I wander to the kitchen to rustle up something to eat myself.  Big Daddy comes in and we chit-chat for a bit, and then we wander back to the living room. 

And there is J-man, at the DVD player, trying to stop the movie with one hand while pulling down is pants with the other.  He has a combined look of determination and panic as it becomes clear to me that he is trying take the DVD out.  It is also abundantly clear to me that yes... indeed... he does have to go to the bathroom.  NOW.

As Big Daddy and I laugh at this half-exposed bum, J-man pulls the disk out of the DVD player and races (pants halfway down) to the bathroom.....

... and makes it!!!

(Might I proudly add that it was #2, too.)

And that is how you know when your autistic kid is truly potty-trained!

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Once again I am thrilled to be highlighted by the folks over at Best of the Best!  Check out this months very very funny blog posts!

The Season of Change

Just a little update...

J-man and Big Daddy

With change comes more change. 

J-man is changing so fast and furious that it is hard to keep up or take stock of the changes in any sort of cohesive way.  He is talking.  Not consistently, but often enough and with enough real communicative intent that I can say he is talking.  He is using sentences.  Mostly 2-3 word, but every once in a while a longer, complicated one comes out and I spend several very long seconds trying to decode what he tried to say. 

I usually fail.


Good-bye diapers?



J-man is officially 99.9% potty trained.  He goes on his own, doesn't need (or want) prompting.  He has had several meltdowns at his program because they were working on potty training from a toileting schedule perspective (go at regular intervals...  like every hour... and reinforce attempts).  One day last week, J-man just decided he would have none of that.  He starts a round of temper tantrums when they would try and make him go.  Over the weekend I just decided that hey... it's his body... he should get to decide when he goes to the bathroom.  So I would ask "have to go potty??" and leave it up to him. 



Only one accident.  At Target of course. And number 2.  Awesome.

I promptly informed his program to back off on the whole 'forced potty' thing.  He gets it.  It is his body, and he gets it.  They have, and so far no accidents this week.  He still wears a diaper at night, but only because I am too chicken-sh*t to risk it.  He stays dry, but I cannot handle the pressure. 

Nonetheless, I think this might be the last pack of diapers I will have to buy.  Ever.

(yes, I know I have just jinxed myself)

Yet with all these great changes... and they are uber-great...  come the meltdowns.  Think nuclear.  Chernobyl-like.  Over such important things like "who gets to carry his backpack" and "who gets to pour the juice".  I am going to make the huge assumption that the reappearance of Melt Down Man is rooted in all these new changes, as he learns to adapt to the New Skills. 

Cool beans.  I will just put on my helmet and hide under my desk.  Duck and cover, my friends.  Duck and cover!

Stickers

Dear Mommy,

Just buy me a @#&% sticker book already.

Love & kisses,

J-man

Sides

When you don't listen to me, you hurt me.

When I don't listen to you, I hurt me too.

There is a saying:  All politics are personal and local. 

We focus on the world, on issues, and on others, based on our own concerns and experiences.  We frame the opinions of others based on our own ideas and thoughts.  Our perception of the world is the only as valid as our own experience.

I know what I perceive as the color “red”.  You know what you perceive as the color “red”.  We might both refer to the same thing as “red”, but in reality I have no idea if you experience ”red” the same way I do.  That is just the truth of the human experience.  We are, for better or worse, trapped in our own heads.

There has been an on-going ‘dialogue’ the last several weeks regarding the nature of advocacy and the disability community. 

di·a·logue:  a conversation between two or more persons;  an exchange of ideas or opinions on a particular issue…. with a view to reaching an amicable agreement or settlement.

I have found this conversation exceedingly frustrating, as I know many have.  Both sides (the original posters and subsequent commenters) have tried to communicate.  There has been a problem, however, and I think I have figured it out. 

It is The Big But. 

It goes something like this:

I hear you saying X, Y, and Z….. BUT you don’t understand A,B,C and you should think A,B,C before X, Y,Z.

Oh, yes, I hear what you are saying about A,B,C, ….. BUT I am concerned about X,Y,Z….

A dialogue requires an exchange of ideas with a goal of understanding the other side of the issue and coming to an agreement of some sort.  To do this, we have to start by listening.

lis·ten   : to give attention; attend closely for the purpose of hearing; give ear, to pay attention; heed.

You will note that this definition has nothing in it that denotes you speaking or expressing an opinion.  It is merely taking in information.  From listening, you are working toward understanding.

un·der·stand : to perceive the meaning of; grasp the idea of; comprehend; to grasp the significance, implications, or importance of.

Note that listening and understanding do not necessarily mean agreement.  In fact, listening and understanding have nothing to do with your opinion whatsoever.  Listening and understanding are about the perception of others, which is terribly difficult for us humans (for reasons stated before).   But dialogue will never be successful without close and feverish work toward these two goals. 

How do we move toward listening and understanding effectively?

Stop speaking. Yes, you.

Ask questions without your opinion interjected.  Seek knowledge. 

When you receive an answer, listen.  The moment your brain goes “But I think…”, stop.  Ask again.  Listen again.  When your brain goes “But what about…” STOP.  Remember that listening and understanding are not about you.  Understand their position. It is real and valid. You don’t have to agree, but that doesn’t mean you can’t understand.  And once you truly understand, you can accept.  And you may find common ground.

You may be saying…. BUT what about my opinion???  Stop. 

di·a·logue:  a conversation between two or more persons;  an exchange of ideas or opinions on a particular issue…. with a view to reaching an amicable agreement or settlement.

A true dialogue means you will be asked questions.  Answer them.  Do not rage at the other side.  In fact, as best as possible, do not mention the other side. It puts the recipient on the defensive. Present yours calmly.  Explain what it means to you. Explain what you hope to achieve.  Explain what you need help with.  Be open to educating.  Expect that they may not understand at first.  Be okay with that.  Allow their humanness.

And with all of this, approach others with compassion. 

I fear that this community is not really ready for dialogue.  I think questioning and listening with a simple goal toward understanding maybe needs to be where we work.  Stop talking.  Start listening.  It is terrifically hard for us, but a struggle worth working toward.

The world is really good at tearing us apart.  We are really good at tearing ourselves apart.  Let’s not allow it to happen.                                                                                   

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(sorry abou the formatting issues.  HTML hates me)

The Reason I Have a Headache

The following are excerpts of conversations had with J-man over the course of the day.  See if you can detect a theme.


Me:  Wanna go potty?
J-man:  No way!

Me:  Want some raisin bread?
J-man:  No way!

Me:  Let's put on your shoes and go see Mumu.
J-man:  No way!

(at the Walk for Autism Speaks today)

Me:  Let's go back and see the giant frog (a character he loved)...
J-man:  No way!

Me:  Want a cookie?
J-man: No way!

Me:  Time to find Daddy.  We are going this way...
J-man:  No way!

Me:  Time to eat!
J-man: No way!

Me:  Let's play cars...
J-man:  No way!

Me:  Let's watch a movie..
J-man:  No way!

Me:  Let's pray for world peace and all the chocolate we can eat...
J-man:  No way!!!

Me:  Time for bed!
J-man:  No way!
Me:  Oh, most definitely, YES way!

Wit and Wisdom from the Parents of Special Needs Kids

I have some exciting and crazy-ass news. 


Click me to buy.  Pretty please!

 My very first, official, honest-to-goodness, published-on-paper essay has just come out!  I have been honored to be part of this amazing group of writers! 

I am not sure I am terribly witty.

And wise?  Doubtful.

But humbled and honored...  most definitely. 

I will be passing on more about this compilation in the near future, but I just had to tell you right away. 

The Patron Saint of Potty Training

Okay, I am not Catholic.  But if I were, I think a Patron Saint of Potty Training would be an absolute necessity.  I mean really...  if you are potty training a child, you need a little divine grace.  Or a lot.

And I will admit, whether it is sacrilegious or no, I have been on my knees doing some serious praying.  And most of that praying has been here:

I hate this flooring.
Hate. It.

And most of it has been in the form of "oh please oh please oh please God let him potty in the potty chair".  I would imagine God has much more important things to attend to.  So a Patron Saint of Potty Training could... you know, take a message. 

But I can now say with much pride and thankfulness, we have had a potty miracle.

J-man peed on the potty yesterday.  Twice.  And today.  Twice. And yes, he even did one #2!  I mean, come on!  That deserves some serious thankfulness, praise, and drinking of the wine.  We spent approximately 5 hours in the bathroom yesterday.  Yes, in that ugly ugly bathroom.  I spent most of it on the floor.  Yes, that ugly ugly hard floor.  But it was allllll worth it!

The Bully Seed

They cruise our neighborhood on two wheels, riding the street in an erratic, swerving pattern.  The older boy (8) dominates the road as he swings up and down the pavement.  He glides into various driveways unbidden, using the slopes of the asphalt to accelerate at break neck speed back into the street.  The younger boy (5) chases after him like a shadow.  However, he stays at the edges of the cul-de-sac, riding round and round the circle in an effort to keep up with his mentor. 

This has been their summer, these two boys of 8 and 5.  And largely, they have passed by me unnoticed.

So we take our Miss Dolly for a walk, J-man and I.  J-man holds the leash proudly, sliding the loop up his arm nearly to the shoulder as we head down the block.  He doesn't really understand the purpose of walking a dog, but he does understand the basics.  And lucky for us, so does Dolly. 

Along the way we stop at a neighbor's home.  The mom is relaxing outside while her daughter (6) plays with chalk and her son... the younger boy... rides the loop with his friend. We stop to chat.  J-man heads to the toy bin in their garage, pulling out a toy gun (of course).  Makes shooting noises at no one in particular.  The boys arrive and circle us like hawks.  The older boy's eyes are sharp on J-man.  He sees the different in him.  He pulls the younger boy over and whispers in his ear, casting glances at J-man.  The younger boy's eyes widen and he stares at J-man with new speculation. 

The exchange goes by me on my periphery.  I barely notice it until I see their eyes.  How they look at him.  With suspicion, contempt?  Can a five year old look at another child with contempt?  I am not sure, but some quality of 'less than' was in their eyes. 

I heart stops and I go cold. 

Nothing has been said.  Or done.  Just those eyes staring at J-man. 

I try and shake it off.  I move to taking J-man home, but he will have none of it.  These toys are too cool, the evening air too sweet, to go home and have pizza.  After a considerable amount of protesting, I finally get him moving toward our house.  He is pissed.

The boys follow us with their bikes, passing and circling back.  They stop to whisper to each other again, shooting glances at him as they do.  I hear his name emerge from this click and my head whips around.  I make steely eye contact with the boys.  The younger one flushes bright red and speeds off.  The older one looks me in the eye for one beat longer than he knows he should, and then leisurely rides home. 

J-man is oblivious to all of this.

I go inside and cry.  J-man sits on my lap with a wrinkled forehead. 

"Areyouokay?" he asks in his lilting way.

"I'm fine, buddy.  Okay.  Don't worry." I say, trying to calm myself.  I mean, nothing has happened!

"Smile!" he insists.  And I do.  Really, what choice do I have when this little slice of heaven commands it?

Later I ask myself:  Have I just witnessed it?  The bully seed being planted?  The seed of difference, of other, of contempt, being planted.  Is this where it starts?  Passed from an eight year old to a five year old. 

A five year old. 

And where do we go from here?

This is just craptastic.

Potty Weekend (Day Two)

And finally... the end of Potty Weekend...

Maybe not an Epic Fail, but certainly not the Potty Miracle that I was hoping for.  Of course, given how we do things around here, I should have known it would be the Hard Way.

So what went well?  I can honestly say that... by the end of the weekend... we have accomplished the following:
       J-man willingly sits on the potty for extended periods of time.  Think 30 minutes or longer. 
       J-man will go sit when prompted.
       J-man has learned how to recognize when he is wet, and has on two occasions shown me and then went to sit on the potty afterwards.
       J-man has learned to like big boy underwear.

And what didn't?
       J-man never actually peed on the potty.  Indeed, he seemed to deliberately hold off until about 5-10 minutes after he was off the pot to then relieve himself.  At one time I noticed J-man doing the potty dance and I tried to get him to go sit on the potty.  He yelled no no no and then ran away.  Five minutes later, he'd had an accident... and proceeded (on his own) to go sit on the potty after the fact.  Clearly he is missing the point.

So what now?  Not exactly sure.  Do I keep up the same intensity or ease up and decide he is not ready?  He isn't fighting it, but.... I am exhausted.  

So, mommas and papas.... thoughts?????

Our Big Fat Potty Weekend

Day One of our Big Fat Potty Weekend

Mommy : 0
J-man : #1 and #2
Winner:  Stanley Steamer Carpet Cleaner

For the longest time, J-man refused... I mean had ZERO willingness... to even sit on the potty.  And so we haven't pushed it.  And then, about a month ago, he started to show a little interest.  He started to be willing to sit... first for 10 seconds, then for minutes, and even started doing it at his program.  Two to three time a day we were able to have him sit and try.  And then, on the day we got Dolly, he peed on the potty for the first time.  Alas, it was at school, so I couldn't have the out and out freak-out party that I wanted to have for him.  With presents and rewards galore.

Oh well.

So given these successes, I decided that this weekend we would kick it up a notch.

Away went the diapers.  No pull-ups.  Big boy undies only! 

Trips to the potty every hour at least.

Rewards for sitting on the potty.

BIG rewards waiting for the BIG moment.... and waiting... and still waiting...

How can we spend that much time in the bathroom and not even have an accidental pee???

Nope.  He was happy as can be, ring around the derriere, singing songs and reading stories and playing with the numerous Dollar Store toys I bought.  But no potty business..... until about 10 minutes after getting up and then BAM... we are changing clothes.  And cleaning the carpet.

It's okay, though.  We will try it again tomorrow and see what happens.  So far J-man is having fun with it (related to the treats and toys no doubt) and who knows... maybe something will click.

Pray for us. Or at least me. PLEASE.

Be Inspired

Be Educated HERE

Be Supportive HERE or HERE (Team PIE!)

Be an Advocate HERE

Please...  BE POWERFUL, so J-man (and Bianca and Kay and Ethan and Connor and... the list goes on and on) can be the very best they can be. 



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Thank you to Lou from Lou's Land for this amazing work.  You inspire me.

Introducing Dolly

I am happy to announce the newest member of our family:  Miss Dolly!

Miss Dolly is a seven year old King Charles Cavalier that my friend's friend was breeding, and she decided that Miss Dolly needed to go into retirement and have a chance at the good life.  It only took a little begging and pleading for Big Daddy to come around.  And now I think he is loving her...

She needs a bath.  And a haircut.  But she is sweet as pie, and tolerates the absolute hysterical excitement J-man had when he met her.  Miss Dolly is going to be awesome for him, I can tell already. 

Oh, and have you ever heard of debarking?  That is when the cut away a portion of the vocal cords to soften or eliminate the dog's bark.  I had never heard it before.... it sounds barbaric.... but the previous owner (prior to the breeder we got her from) had her debarked.  I must admit I am a little horrified.  She has the softest squeak.  And don't think that I don't miss the irony that my apraxic, verbally challenged son's dog has no voice.  In a way, it may be a match made in heaven.

On another note:  J-man peed on the potty today!  Details coming in my next post....

The Little Things

I will say being J-man's mom has definitely helped me pay attention to the little things in life.  The simple pieces of the puzzle.  When they fall into place, there is no missing them.  No ignoring or having them pass by unnoticed.  The smallest gain, the simplest milestone is noticed and honored and cherished.  It is a double edge sword, of course, because the lags and delays are there too, and every 'problem' makes me afraid we have a Problem. I notice them too.

But one thing that I hope J-man comes to know about his mommy is that ... if I am anything... I am present and aware of him.  The whole of him. 

And that every single moment matters.

Therapy Schmerapy

Confession Time

We enrolled J-man in an ABA-VB program in June. 

There. I said it. 

I can hear some of you thinking "so? what's the big deal?"

Ahhhh...  well, if you are thinking that, you might not be aware of the thorny issue of what kind of therapy is the "right" kind of therapy for kids on 'the spectrum'.  Recently I received this email from a reader (I have those???) who asked me how I knew what therapy was the right therapy for J-man?  I can't remember exactly what I emailed back (probably something unbelievably wise and smarty-pants), but in reality... I have no idea.  In fact, if I am honest with myself, I am not sure I have made the right therapeutic choices. 

You see, the options are many.  Some therapeutic options are well researched, well documented, and well marketed.  Some are back-alley and sketchy.  And when I first fell down this rabbit hole, it was very difficult to know which way is up.  Which way is the right way.  AND the thing is... the right thing for J-man might not be the right thing for another child.  So how do you weed through all of the options and even have a clue what is "right"? 

And the opinions... oh the opinions... it seems like every parent, professional and specialist has an opinion about what is the best... most effective... most appropriate therapy.  And what are not the best therapies...  That tends to result in different therapy "camps".  Camp RDI.  Camp Biomedical.  Camp ABA.  Camp Floortime.  And I have spent most of my time at the Camps CP, Flootime, and RDI.  Camp ABA held no appeal for me.  To be truthful, I am still not 100% for Camp ABA.  So why enroll J-man in a program I have real reservations about?

First of all, I have come to believe that there is no such thing as the "perfect" therapy.  The appropriateness and effectiveness of a therapy is wholly depends on who is delivering it and what you are trying to accomplish.  For example, the Communicating Partners approach is perfect for relationship building and engaged social communication.  ABA (discrete trial) is good for developing compliance and teaching discrete skills, but not so great at engagement and generalization.  And ABA/VB is the more sophisticated sibling of traditional ABA, combining some of the elements of more relational approaches but with the behavioral structure of traditional ABA.  Each area best serves different purposes.

Secondly, I also believe that there is nothing wrong with taking combined approaches.  Why not do pieces of each?  Why not take the best of all of them and combine them to address the needs of J-man?  I mean, isn't the best therapy individualized and adapted for J-man's needs? 

So when J-man turned four,  we took a good look at his progress.  Some areas were much better.  Other areas seemed stagnant.  With consultations with the Camaratas and examination of different programs, we found Partners and decided that we would try J-man in the program part time, continue a CP approach at home, Speech and OT twice a week, and see where we ended up after 3 months. 

J-man LOVES Partners.  He is constantly challenged and stimulated, which is perfect for him.  When he entered the program I was upfront and honest about my concerns.  About whether he would fit with what the program had to offer.  About his strengths and his challenges and what his needs really are.  And what our expectations for him are. The staff were very open to our concerns and issues, and to how my current 'home program' might fit into what they do.  In essence, they have said and done all the right things.  We are very pleased. 

We are taking a chance on doing something I would not have normally signed on to because being flexible and open is more important than holding on to some preconceived ideas about what is the "right" therapy for J-man.   And so far we have not been disappointed. I might get kicked out of some of my other camps, but I hope not.  I hope that my CP peeps don't drum me out for trying ABA/VB. 

In the end, what is the "right" therapy?  I guess it is the one that works for your family. 


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Once again, the wonderful folks at Best of the Best SOS Research have featured me in this month's addition Therapy and Special Needs Kids.  Check out these awesome writers and get their take on the whole therapy world!

Wanna Go for a Walk?

I can't help it.
 I love the photo!

I try to do one fundraising charity walk a year.  This year it seems especially important, as we delve deeper into All Things J-man.  And this year, moreso than many other years, the funding for research and resources for special needs kiddos is remarkably thin.  So this year I have decided to support the Walk Now for Autism Speaks by building our Team J-man and (hopefully) convincing some of you to consider sponsoring our team!

Why, you ask??  Well, if you read this blog, you probably already know why.  J-man and other children like him remain a mystery for many families and professionals.  Providing support, whether it is through well-done research or through providing support services to families, is vitally important for our kids (and our sanity).  And really, in this world right now, the only way that support can be given is through your generous nature.

How can *I* help, you ask???  

Ahhh... there are so many ways.  First, go find your calendar and your wallet.  Don't worry, I will wait.

*insert annoying musak soundtrack*

Ready?  Excellent!

First Option:   Join Team J-man on Saturday, September 24th 2011 for the Walk Now for Autism Speaks at the Mall of America in the Twin Cities!

http://www.walknowforautismspeaks.org/minnesota/teamjman

If you join us, you can have a lot of super-cool fun and help raise both funds and awareness!!  Plus, I will make cookies!  If I get a least 10 walkers to join me, we get our own special area just to hang out and look super-cool.   AND you can make your own very special page on our Team J-man site.  So help us fund raise and come window shopping!!!

Second Option:  Not much of a walker?  That's ok!  You can help with a donation to my own Team J-man page.

http://www.walknowforautismspeaks.org/minnesota/mommajman. 

Obviously donations with lots of zeros would be great, but I would also be thrilled with single digit donations..  So show us some love!!!

Third Option:  Pass the word about Team J-man!  Direct people to our blog so they can see our story and be inspired (or just amused).   Or to our fundraising pages.   Just let people know and schmooze for us a bit!!!  And, let's face it, for a very worthy cause.

Questions?  Just let me know!!! 

Hot Summer Days

I owe you a post, but I haven't really had a chance to sit down and write.  As you will see, J-man and I have been VERY busy. 






This is an excellent language day for J-man. If you have ever wondered how J-man's apraxia and ASD affect him, here you go! What you are hearing is his language delay and apraxia, but if you listen very carefully you will hear him say a lot.... even one or two full sentences!!  His engagement is pretty great today... and yes, I should be playing with him... I promise you, I did put the camera down and get wet!! 

It is the only way to spend a hot summer day!

Puppy Love

Here is a sentence I never ever really thought I would say:

I want a dog. 

It isn't that I am not a 'dog person'.  I like dogs.  But I never really thought I would actually 'desire' a dog.  But I do.  I want a dog. Really! There are many reasons I want a dog (the snuggle factor, man's best friend, the unconditional love, substitute baby factor, etc etc), but one central reason is that I have seen how J-man reacts with a dog. 

We had a Pet Day at J-man's program the last week.  There were assist dogs there, as well as other people's family pets.  J-man has always shown some interest in dogs from a distance, but up close and personal?  Well, he got a little scared.  So we went to Pet Day thinking that exposing him to some dogs in a controlled setting might help. 




Puuuppppy  Luuucy!

 J-man loved it!  He especially fell in love with the little lady named Lucy.  Puppy Lucy, Puppy Lucy.  J-man squealed, giggled, and (playfully) chased after the dog.  He adored it when Puppy Lucy gave him 'kisses" and then proceeded to make puckered 'smack smack' noises to her to try and get more.  He cried and cried when we went home.

"Puppppppy  Luuuuucccyy"

Now he brings his stuffed dog everywhere.  And I mean everywhere... to therapy, to Target, etc.  He makes it give him 'kisses'.  He sleeps with it.  And when he was with Puppy Lucy he was soooo engaged.  My gut just says that he would do great with the right dog.

But I am the only one.  Big Daddy says no.  Mumu thinks it is a bad idea. 

Dogs are "too much work", apparently.

I am bumming because I just think it would be great and I wish I could get the others on board.  But hey... I also don't want to be the only one excited about it.  And it appears that if I went out and got a dog, I would be the only one happy about it. 

Except J-man.  I think he would be thrilled!

A Career Option?

 

J-man found my camera.  A sample for you.

Someday you can say "I knew him when...."

Spectacles

It started out last week with 6 seconds at his new program. 

Built up to wearing them for 10 minutes at a time yesterday.

And today, he wore them for the half hour car trip to therapy. 

So we are getting there!  They are too big...  a by-product of me not being able to really size them when we purchased them... but I think we can work with it. 

What do you think?

Skipping Best of the Best for July

I really love writing a monthly post for the Best of The Best folks. 

However, this month, I think I have to skip out.  You see, the topic is "sleep issues and the special needs child". 

Ummm... J-man actually sleeps like a dream.  Well, like any other four-year old, at least.  The whining at bedtime is nominal.  He rarely wakes up in the middle of the night, and when he does he usually goes back to sleep fairly easily.  Doesn't sleep in our bed.  Wakes up between 6am and 8am most days.  And aside from the fights to get him in-and-out of his pajamas, we really have it quite lucky.  We do stick to a fairly consistant routine, but even when things switch up (like trips to the cabin, etc)... it isn't so bad. 

Of all the things we have to deal with, sleep issues really aren't one of them. 

Which from what I hear is incredibly lucky. 

So I think it might be best to skip out on this one. 

But check them out anyway... no doubt they will have lots to say on the topic!!

Okay, now, this just isn't FAIR!

Glasses????

Are you fricken kidding me???

I took J-man to the pediatric opthamologist today.  His vision is perfect.  PERFECT!  But... of course... there is a problem.  His right eye turns in when he looks at things in close range.  The doctor said that if that isn't corrected, he will lose vision in that right eye over time.

Great.  Just fricken great!

Apparently the fix is glasses.  Or surgery.  And clearly, glasses are the first choice for the doctor.

I am not so sure.

Let me just say upfront that this rather innocuous event has just devastated me.  In the grand scheme of things, this isn't that big of a deal.  Right?  Right??  But it feels very 'salt in the wound'-like. I mean, come on.... can't we catch a break on something??? Of course, I reflect back on the trauma of my own glasses-filled childhood....



Circa 1989
No wonder I couldn't get a date.


... and I think about my baby boy's beautiful eyes behind glasses and wanna weep...


Can you imagine glasses
covering these baby blues??


But what I think has me most....twisted up... is HOW AM I SUPPOSE TO GET HIM TO WEAR GLASSES?????  Cripes, I can't get him to sit... fully clothed... on a potty chair.  I can't get him to try any new food, ever.  I can't help him brush his teeth. 

So how am I suppose to get him to wear glasses????

Pity Party, Table for One

Welcome to my Pity Party. 

Feel free to pull up a chair.  However it is BYOB (bring your own bitchin').

I have heard some people don't believe in pity parties.  Well, bully for you.  However, I am human and I feel the need to rage against the universe and bitch a bit.  So if this ain't your cup of tea, I will not be offended.  I'll just drink more wine.

And now... without further ado...  a list of Things I Hate (in no particular order of hated-ness)

*  I hate that when I am driving home with J-man from his new program, there is no conversation.  It is a long car ride and there is no response to "what did you do today?".  He can't tell me if he had fun, if he likes his teachers or other kids in the class.  There is just silence.  Except, of course, for the immediate request for ice cream that comes from the back.... "ie-eam!  ie-eam!!".  And that leads to....

*  I hate that I buy ice cream for J-man every day because he asks for it.  But it is the only thing he says.  So I can't seem to help myself.  And no doubt his future obesity will be my fault. 

* I hate that every stinking thing I read about feeding my kid makes me feel even more guilty, helpless and worthless as a parent. So thanks for that, a**hats!


*  I hate that J-man has such a narrow range of food interests and there doesn't seem to be anything I can do about it.  And yes, you could say that I should just not give him anything but healthy food and he will eventually eat.  But you don't know J-man....  he very well might starve himself.  Seriously.

*  I hate that I have zero glimpse into the future for J-man.  None.  Not even the illusion of what the future will be for J-man.  Should we save for college?  No idea.  Should we plan on him living with us for the rest of his life?  Couldn't tell ya.  Will he ever have friends?  Your guess is as good as mine.  Will he even care?  I'm going to say yes, but can I even be sure of that?  The answer is no.

*  I hate that I have to fight to get J-man to even do basic crap... like brushing his teeth.  Or use the toilet.  Or ride a trike.  Or have a friend. 

*  I hate that my own illusions of human goodness have been shattered.  And not by Watergate, or the fact it seems like every male politician seems to have a problem keeping Mr Willy-Winky in his pants, or that Wall Street seems hell-bent on proving that they have zero ethics or morals at all.  While all these things definitely erode at one's confidence in humankind, I have found myself more personally violated by the events with the school district this last year.  That the people who are suppose to help don't.   That I can't trust the system that I should be able to trust.  That in the end we really are alone in all this. 

* I hate that nothing is ever normal and it appears it never will be. And yes, normal is boring.  I don't care. 

* I hate that everything is just so f*&%ing hard. 

Best. Laugh. Ever.

Up North, Ya Know, U Betcha

Itching to get out of town (even for an overnight), J-man and I headed 'up-nordt" to hang out at my parent's cabin. Alas, Big Daddy had to work all weekend, which was a major bummer since it was Father's Day weekend and all. But since he works from home I figured he would rather we be out of his hair... plus a kidless house can be awful nice.


Life is simple "up nordt". As you can see, people in the northland find all kinds of ways to amuse themselves.

Suck it, NYC.
You might have Broadway,
but we have meat raffles!

I know you are jealous.

The highlight of the weekend was going out on the boat. J-man loves the boat. And apparently, J-man loves fishing. This was an unknown until this weekend when we went for a little boat ride and Grandpa started a little fishing. He caught two.

And J-man was in love.

He squealed. He laughed. He wanted to hold the fish. Clean the fish. No really, he took a towel and 'cleaned' them. We let Grandpa do the real dirty work.

J-man has zero... I mean zero... fear of fish.



The next day, Grandpa produced a J-man size fishing pole. J-man is in love with Grandpa now.   J-man was also a bit of a menace. He wanted to "cast" the fishing pole just like Grandpa did. Except there are three really big problems with that. The first was that he does not have the motor coordination down to do a real fishing cast. The second... he has no patience for failure. The third? He will not take direction from anyone. He got the jist of what to do from watching Grandpa, but refused help. So he swung the rod... with a live hook buried in a fake worm... around willy-nilly.

I still have visions of losing an eye.

What it is like...

... to watch a movie with J-man.  The action really gets started at about 1 minute and 30 seconds, give or take.



That phrase making your ears bleed?  "More puppieeee (movie)"

In Defense of Media

This month's topic over at Best of the Best SOS for Parents is on the effect that media (TV, computers, etc) has on special needs kids.  I am going to go out on a limb and say that I think the effects might be... oh, what is the word???.... oh, yeah, BAD.  And I am going to guess that many of the other fabulous bloggers will either spend time writing about either how evil TV/Computers are OR how overwhelmingly guilty they feel for allowing their children to watch/play said media. 

And they would be right.  TV is evil.  It is passive and minimally social.  It is often violent.  It is very repetitive, simplistic, and requires very little use of imagination.  All kinds of (poorly designed) studies show that letting your kid watch TV is like feeding them lead-paint and mercury-filled tuna with a BPA-infused glass of red-dye-#2 Kool-aid spiked with vodka.  I am actually surprised child-protective services isn't called.  And I feel very guilty about letting J-man watch TV or play on the IPad.  On the tally sheet of "how I fail as a parent", TV watching is #1 with a bullet. 

So, having said that...  allow me to spend just a few moments to defend media for special needs kids.

(and oh boy, does it ever need a defense!)

Letting J-man watch TV allows me to not go ape-shit insane.
 
     Parenting a special needs kid is not for the weak.  The analogy of "it is a marathon, not a sprint" comes to mind.  And TV is like the porta-potty along the way... Gross, but a necessary evil. While J-man watches Little Einsteins, I get to do exciting things like dishes.  Or laundry.  Or pee.

The repetitive nature of TV does actually teach J-man something.

     When J-man floored us with his knowledge of the alphabet, it wasn't because we didn't think he could learn it.  It was because we never taught it to him.  In our world, we had bigger fish to fry.  So where did he learn it??  I am guessing Sesame Street.  Maybe SuperWhy.  Now, of course, knowing the letters and using them to create words are two entirely different things.... but hey, that is one thing off my list! 
    Also, watching the same shows over and over and over and over again allows J-man to hear words being used in the same context with the same reference point.  The difference between TV and flashcards might only be in the entertainment value.

TV can be a medium through which we engage each other. 

     A few months ago, Mary Camarata from the Vanderbilt Late Talker Foundation saw our video of J-man watching Aladdin with Big Daddy:



She LOVED it, and actually used it in a lecture series about media.  And yes, she thinks media is evil too.  BUT, she noted that in the case of this video, we were using the context of the show to create opportunities to engage J-man, and though this engagement he went from single sounds to repeating 3-word utterances (unheard of for him at that time).  Her point was that sometimes media can be used as a springboard to engagement and discussion, but that it requires an active thought by us parents to make that happen.  But it can be an entry point into their world.

Other media, like the all-holy IPad, provide a ton of different cause-and-effect learning opportunities.

Shannon Des Roches Rosa from Squidalicious has numerous articles touting the benefits of the IPad for children with disabilities (like her son Leo).  Check her out!  What little I can add is that the IPad is huge reinforcer for J-man, and an activity that we can engage in together.  Let the bribing commence!

So there you have it.  A few small points of defense for media .  Now you will have to excuse me, J-man and I have a date to watch Blue's Clues for the 100th time.  I wonder if Steve will wear that sexy striped shirt again? 


    

Playing Hookie from IEP Season



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This year, I am missing IEP Season. 

Actually, I am not exactly missing it.  IEP Season, that is.  I am not missing it AT ALL.

It is like I am suppose to be at an all-day staff meeting with a boss who can either be sweet as pie or a complete prick.  Who cuts my budget.  Wants me to work Saturdays.  And moves my desk into the basement.  And takes my red stapler.

And instead, I took a mental health day.  I called in and am frolicking at the beach.  Or going shopping.  Or doing yard work.  Or having painful dental work.  You know, something better than the anticipatory soul crushing anxiety and emasculating experience of IEP meetings. 

Not that I am bitter or anything.

I know my reprieve is probably short-lived. Unless I homeschool, I am pretty much doomed to have to enter the IEP arena again.  I will have to go back on my meds, endure the stress-induced ulcers and migraine headaches, and pray pray pray that no one breaks my baby boy. 

But until that day comes, I am going to bask in the sun with my son.  Make the decisions that are right for our family... our son... without condescending "we know better than you" attitudes.  Enjoy the company of professionals whose first priority is the J-man... as it should be. 

Bliss!

Video from IMFAR

I just thought I would share this great interview with the keynote speaker from the Internation Meeting for Autism Research.  Brings me back to my old days.

Some Things Are Not DIY

J-man hates to have his hair cut.

HATES. IT.

Usually it involves crying and tears and sobs and a nervous hairdresser doing a scissor cut.  No clippers, thank you very much.  So I tend to put it off...

...and off.... and off....

And this time we decided that maybe we could just try and do a buzz cut with the clippers at home.  Maybe, just maybe, having Mommy and Daddy doing it in the comfort of his own home might work for the J-man. 

Again, as so many times before, Mommy was so, so wrong.

How Bad It Got :

Just call me Shaggy

And Our First Attempt (before he freaked)

Our very sad asymmetrical back buzz cut



Because we know when we are licked.... and when we don't have a clue what we are doing... we decided that the professionals could earn their money (and a hefty tip) to fix our screw-up and deal with our little J-man.  And let me just say... thank goodness she went SHORT.

A little more of a short-and-tight look

Note to self.....some things to never DIY:

           1. Heart Surgery
           2. Dental Work
           3. Cutting J-man's Hair