Tuesday, February 14, 2012

A Different Kind of Valentine's Day

My Valentines
Photo from 2009

I sort of forgot it was Valentine's Day.  I find that odd, as I did remember to bring Valentine's cards for J-man to hand out to the other kids at his program.  Made a point, in fact, to go back into the house and get them before we left.  But at a late afternoon lunch with Big Daddy, he said ... sorta as a side note..."oh Happy Valentine's Day".  And I went "yeah... I kinda forgot.  There is a card for you in the drawer at home....".  And we both wrinkled our noses and laughed.

We aren't anti-Valentine's Day.  While there is plenty of reason to think Valentine's Day is just this made-up-marketing-buy-candy-and-jewelry-holiday, I also see nothing wrong with celebrating love and romance.  Taking one day out of the year to just be sweet to each other.  It's cool with me.  We just didn't really do that this year.  This year seemed to be a "we love each other everyday" kind of year, with no special pressure one way or another to somehow prove it today.

So instead of roses and romance, how did I spend my day?

Well, last night our Miss Dolly had to go in for emergency surgery.  She had an uterine infection, and it needed immediate care.  I spent pretty much the entire evening at the vet with her, getting home after midnight and getting up far too early this morning with a very cranky J-man.  Big Daddy fetched a very tired and sad little dog home while I delivered J-man to school.  Cranky.  Then I spent about an hour in a meeting with J-man's OT, discussing his latest evaluation and new plan of OT action. It involves pencils and fine motor skills and feeding.   Slow and steady wins the race, right?

After the rather productive OT meeting, I embarked on my newest folly of epic proportions  project.  Somehow... and I am still not exactly sure how this happened... I got suckered talked into helping spearhead a group that is trying to get insurance coverage mandated for individuals with autism in my state.  Right now 29 states have some level of mandated coverage...  and Minnesota is not one of them.  What this means is that very few private insurers will pay for any therapy or services for autism (ABA, Speech, OT, whatever is needed), and that most families have to turn to the state Medical Assistance plans to get any coverage whatsoever.  And that coverage is extremely difficult to obtain...  lots of hoops, lots of hoops.  It is a dicey situation, and one in which I want to help rectify.  And now, suddenly, I am in this position to help recruit and organize people to write, call, and visit their legislators at the Capitol to try and get some legislation passed and policies changed.  

Dude, I am just a mom!  

Here I am with this little team of people, starting a Facebook group, making up a website, having phone conference calls and today...  today I went to the Capitol and had my very first meeting with my Senator.  I told him our story and showed him videos of J-man's progress.  Talked about the issues specific to us right now.  He asked questions.  I answered some of them... failed some... and promised to get back to him on those things I could not answer. 

Dude, I am just a MOM!

But here is the thing...  even though I believe that 'politically' he was not one to likely support issues like public insurance or putting mandates on private companies or etc etc etc... you know the drill... when he saw the changes in J-man on video! How utterly amazing he is!  When it was there, in his face, and I said to him :  we are the lucky ones.  We get to have this because my employer is knowledgeable and understands its importance.  There are so very many who DO NOT GET EVEN A CHANCE to see if therapy could help them....

I know it made an impression.  I could see it in his eyes.  I think that when this issue comes up again for him, he will not disregard it or shrug it off. He will remember J-man, the little boy in the video, and he will spend a little time learning more and being open to the issues.  And maybe... just maybe... help be part of a real solution.  That is the power of telling your story.

So I guess that is why I got suckered talked into doing this crazy stuff.  Because in the end, if I am not part of the solution, who will be?  I might be 'just a mom', but I am J-man's mom. 

And J-man matters.  

Wednesday, February 8, 2012


I want J-man to have friends.

I think all parents want their children to have friends, right?  Well, except that psycho mom from the movie Carrie.  And maybe that mom from the movie Throw Momma From the Train.  But, you know, their attitudes resulted in some unsavory consequences.

I want J-man to have friends.  And when your child is on the spectrum, relationships are hard, and language is hard, and processing is hard...  friendships become hard too.  Hard for the ASD kiddo, and hard for the neurotypical kiddo, and hard for parents.  Cause, you know, no one knows what to do!  Or how to do it or how to explain it or how to manage it or how to understand it.  It is just harder.

J-man's therapists have started working on social play skills, and we are getting some favorable feedback. The trouble is, of course, J-man doesn't always respond... or the other child doesn't respond... and the shared moments are lost due to whatever it is that impedes it.  Sensory processing?  Language barrier?  Attention issue?  All of the above?  None of the above?

Social communication relies on mutual give and take.  And if one... or both... of the actors are grappling with autism, it could be hard to get them engaged with each other.  So I had a thought...  what if we had a playdate for J-man at his program?  With a neurotypical kiddo.  And not just any neurotypical kiddo... my friend's son G-man... a wildly social, verbal, and engaged playmate.  Who just happens to really like J-man and wants to be his friend.  Could they become good playmates for each other with some facilitation from J-man's therapists and us?  Could G-man develop an understanding and appreciation J-man even though he 'plays differently' and doesn't always respond?  Could G-man's persistence (which he has in spades) draw J-man out?

Could they become real friends?

J-man and G-man

So today, G-man and J-man had a facilitated playdate at his program.  It was a first trial, and we were not sure if it would be a good idea or not.  We drank coffee and waited.  And wondered.  And talked about all kinds of things while we waited and wondered.  I am sure my friend was nervous.  I mean, she just left her G-man with a bunch of strangers.  Frankly, I think she deserves a reward for her willingness to try this!  (I adore you, Ms N!)

And as G-man came out into the lobby at the end of the playdate, G-man cried to his mom...

"Mom!  I don't want to go home!  I want to stay and play"...  YES!

Apparently, it was a huge success.  J-man's therapist said it went fantastic!  She said that there wasn't a whole lot of engagement during 'quiet play' (cars, trucks, etc), but during gross motor movement and action play there were wonderful exchanges between the two boys.  She said they would love to have G-man back again, and that they saw real value in working with the boys.  YES!!!

It is a first step and I hope it leads to great things!!!

Thursday, February 2, 2012

Six More Weeks of Winter?

Five years ago today, J-man was born.  The high that day was -10 F below zero.  It was Groundhog's day.  Clearly, when Mr Groundhog poked his head out and saw it was -10 below zero, he turned his furry butt around and said "c-ya in six weeks, suckers!"  Every year since, Mr Groundhog has poked his head out, gave the skies an evil eye, and high-tailed it back underground for six more weeks of winter.  Withdrawing and hibernating in his little cave.

According to the folks in Pennsylvania, Mr Groundhog did the about face again today.  Six more weeks of winter.

But I beg to differ, Phil.  I feel spring in our air.  I see J-man starting to bloom.  I think our winter is nearly over and we are going to be seeing the sun.  So go hide in your hole, Phil, if you need to.

We are emerging.


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