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.  

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. 

I Owe You...

... a blogpost.  I have been tardy, meaning to write many times but just not having the time to be witty and articulate and interesting.  Not that I am that any other time....  but I can't even fake it right now.

So instead, I will just grace you with some pictures of the J-man.



He is resourceful.



He made me slide down this too.  Oh yes, he did.



He really needs to learn how the ride a trike





This might be ther first time he has ever said 'cheeeese' to a camera

 A little side note on the whole "he needs to learn how to ride a trike" caption. 

J-man can't ride a trike yet.  He doesn't have the motor planning skills to coordinate peddling.  Yesterday I saw our neighbor with his little boy who is the same age as J-man ...

(and whom, by the way, never ever talk to us for no apparent reason whatsoever...  ok, maybe it is because of this moment)...

... riding a two-wheeler.  A bike! 

Sometimes I just wanna beat someone's a**, ya know?

When God Whispers

On Friday, we fired our school district.

And it feels like I have shed the weight of the world.

Like I can breathe again, deep and easy.

Like I am free.

Until we cut them loose, I didn't realize how heavy and trapped I felt.  Like I was slowly drowning.  My hubby said our relationship with the ECSE department was like a relationship with an abusive spouse that you just keep going back to, hoping they will change.  That things will get better.  Or that you have somehow convinced yourself that you can't live without them.  But you can...

He was right.

(Relish that confession, babe, it doesn't happen often ;)

As some of you are already aware, we have had some issues with the school district services.  While I mentioned it on one or two occasions, lately I remained relatively vague about the issues. In part this was because we were in the thick of it and I wasn't sure of the outcome. However, through the magic of server-IP-identification, I also became aware some time ago that someone(s) at the school district have been regularly checking out my blog.  I will confess...  I am kind of amused.  Heck, the Internet is an open forum and I do put it out there.  And actually I have no problem with them reading my blog:  I am proud of my boy and all he is doing! But I was... hesitant... to go into specifics about my anger, frustration and angst regarding our conflict.  Not that I don't stand behind my blog...  what I say here I proudly own... but you know, they don't need to know everything.

Of course, now that they are fired...

I will admit I've had some fantasies about writing this post.  My hubby has been dying for me to tear the district apart, to name names and put it all out there.  But now that it is here...  what do I say?  That they acted poorly, were manipulative and lied?  Of course.  That they have made inappropriate and possibly destructive decisions?  Yep.  That they have failed to listen to us or treat us as equal partners?  Yep  That they have failed in their legal, ethical, and moral obligations to the J-man?  It goes without saying. 

We wouldn't have fired them for anything less.

But aside from telling the basic story in my letter, I have no taste for giving them much more of my time.  Instead, I would rather focus on why it took me so damn long to see what has been obvious all along...

We don't need them.

In case you are reading this, IEP "team", allow me to repeat:

We don't need YOU.

We will do this all on our own.  In many ways, we have been. You had a chance to be a part of something magical, something beautiful, something you could have been proud of.  Something meaningful. If you would have just opened your eyes and really saw him...

You lose.

The system is stacked against families.  The power structure leans heavily in the favor of the school district.  Don't get me wrong. The law is built for us.  But failing to follow the law carries few penalties and doing what is right for the child and the family is not necessarily rewarded.  The ethics seem nebulous at best, and it appears to be fairly easy to convince themselves that they have the knowledge and authority to be the ones making the decisions.  It is okay to keep parents in the dark about their options, because if parents know too much then they might challenge you.  As a parent, this attitude can feel very paternalistic:  Do what we say because we know best.  It is our system, our programs, and if you don't fit or agree.... well, too bad, so sad.  So much for the Individual part of IEP.

So we started with Hope.  Hope we get 'the good ones'.  Hope they will really see our child and work with us.  We smile and try and cross our fingers and pray that they share our vision.  And even as the evidence mounts that is not the case... we still Hoped.  Maybe they will see him as we see him.  Maybe they will.... 

And as Hope starts to fade... it is replaced by Anger.  Anger that they are failing in their duty.  Anger that they won't listen or maybe just don't care.  Anger.  We pay taxes.. have since we were 16 and probably will until we die. We have one child... only one.. and I think we have paid our dues.  J-man is a citizen of the United States of America and our society has decided that ALL children deserve a quality education. They are not allowed to fail. This is J-man's right.  They should feel ashamed, right to the core. 

And under all that Hope and Anger is Fear.  Fear about making the wrong decision.  Fear about defying 'authority'.  Fear about doing it all by ourselves... what an isolating, lonely feeling... How will we do what needs to happen for J-man?  Why can't they just love him as we do?  There is so much to love...

I was stuck by Hope, Anger, and Fear.

And amongst the chaos of this week... the lost Hope, the Anger, the Fear...  I read this post by my friend Ange at Life in the Pumpkin Shell.  The last line struck a chord in me so strong and clear it was like God himself whispering in my ear:

One gift allowed me by the spirits who guide me through...'Walk away when it feels wrong.'

And then, in a wonderful repost-response given to me by Ange about their experiences with their son  (who reminds us of J-man so clearly it is scary), I found solace and fellowship.  And Courage...

So while Hope, Anger, and Fear have failed me,
the Courage to walk away will save us all.

And it feels like we have shed the weight of the world.

Like we can breathe again, deep and easy.

It feels like we are free.

.

Funk-a-licious

J-man is in a funk, too.

(Warning:  Philosophical rant ahead.  Proceed with caution. And wine... lots of wine.)

This situation with the school district has me quite in a funk.

F-U-N-K

It isn't entirely about the conflict, although certainly that is the nexus, the center round which the funk rotates.  It is hitting me quite hard, this idea that we are on our own on this.  I guess I had this illusion that everyone in a helping profession actually wants to.... err... help?  And maybe they think they are, in some twisted "we know better than you and your opinion is irrelevant" kind of way.  I can't even wrap my head around their reasoning, it is so foreign to me. 

And to be honest, their reasoning doesn't even jive with their policy and their own initiatives.  Clearly, based on website and literature from our district, preschool inclusion is suppose to be a "focus"...an ideal they are pursuing, striving for.  Indeed, while googling 'preschool inclusion' I ran across a site devoted to the idea of preschool inclusion.  Ironically, the director of early childhood at my district had even commented on the article (weird irony, I know).  I'll protect her identity, but she said in part (in relation to the difficulty in training, organizing, and supporting preschool inclusion, which they strive to do... italics mine)...

".... However, the comments from our partners (in the community) always tends to be that they need more support, a teacher full time or a para full time. Even the para model has been met with a lukewarm response as our partner programs want licensed teachers. Some of these models are very expensive and we are limited to the number of slots they will open for us (for good reason with their size limitations, too). As much as we do to train and collaborate it still feels like the old "your kids" versus the "community kids". "

Clearly (while I hate to admit it) the director is really frustrated with what she sees as an inability of the community preschool programs (be they private or public) to work with the district in a meaningful way. I get that, for sure.  Change is hard for any system.  Of course, there is a hesitancy to invest the money in providing the support.  A full time teacher or para is pricey (a worthwhile investment in my eyes for many reasons, but pricey nonetheless). And part of the frustration stems from the reluctance on the part of the community preschool staff to be a full partner with special education, I am sure.

Except, of course, our preschool wants to learn.  They really, really do. 

And we, the parents, want to collaborate.  To be part of the solutions.  We really, really do.  We have a successful home program that we would love to tell them about, to get them to try.  We want to tell them about him, and what we see as his real needs.  We want to be involved in the solution to the problems in the classroom, and as we are the experts on the J-man, we should be.

So I am not sure I buy the "your kids" vs "community kids" beef.  When we have a willing preschool, a willing family, and a desire to support J-man in his community setting but the lack of support to really help him progress, the district's answer is to segregate him.  Not to build skills here, provide support and opportunities to expand the practice of these teachers in the community, skills they might just use down the road, with the next 'J-man'.  Nope, just pull him out:  it is quicker, easier, and cheaper. 

There is this disconnect between the ideals espoused and the practice in place.  It is like those people who have their corpus callosum cut, resulting in the hemispheres of the brain being separate and unable to communicate with each other.  Each side operating on a completely different frequency, and neither side recognizing or communicating with the other.  Literally, the right side doesn't know what the left side is doing.

(Note:  I used the words "funk" and "jive".  Can you guess the era I was born in?)

Faithful



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 :)
 

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?

GEMM Loves IEP Season.

My current mantra

Did I think that we would dodge the craziness that is IEP Season?

Did I think that... somehow... because we had conversations and decisions made in the Spring, that we would dodge the chaos that is Fall Special Ed?

Oh, silly rabbit.... 

About three weeks ago I received a letter letting me know that Jonathan would be attending preschool at our local school.  This was a surprising letter since we had decided to keep him at Jack and Jill for this next year, and receive services there.  I called the school district office and let them know that some kind of error had been made. 

And a Call came today...

Oh, well, their impression was that the case manager felt that J-man needed more service than they can give at his daycare and therefore he was signed up for their program.  We would need to have a meeting to clarify things.  At the start of the school year.  In two weeks.

And what I find most frustrating... most insulting... is that the woman I spoke with doubted what I was telling her.  That I was WRONG.  That I misunderstood the case manager's plans.  That I didn't know what I am talking about. And oh, by the way, that I didn't get to decide...

Green Eyed Monster Momma's time has come again.  Let's get it on!

GEMM is back....

...and she makes me tired.


Jealousy is a tricky thing. Isn't envy one of the Seven Deadly Sins? I find myself envious of the strangest things lately. Certainly, hearing the Great Accomplishments of others' children can give me twinges. But I find... as the distance between my son and other children becomes even more pronounced... that has become even less of a problem. It sounds strange, but I have stopped comparing J-man to other kids. His path is so clearly NOT their path. As we wade through this uncharted landscape I have come to recognize that looking to them for clarity about my son's development is like reading a French cookbook to learn how to cook Chinese food. Can ya dig it?

No, Green Eyes emerge when I want to do the things that other mommies do, or the things I used to do myself, but can't figure out a way to do it. Oooohhh, I yearn for those days. I wish that J-man was just...easier. Not that he is HARD... he is lovely! But he needs. And needs. And needs more than his same-age peers. Not once in a while either. Everyday.

And lately, he needs it from me.

Daddy is an good substitute, but if mommy is around, no one else can possibly take over. It is flattering. And exhausting. This facet of his personality is relatively new. I've rationalized it as part of his newly-emerging language skills: He prefers me above all others because I actually understand him. I know his signs, his word attempts, and his non-verbal communication. Besides, I am his MOM.

So I miss out on some of the other fun non-mommy stuff.... hanging out with other parents while the kids play. Going out with the girls. Heck, even watching the occasional non-kid-oriented TV show. Straight out downtime. This is not new. In fact, it is quite old. However, it seems that the longer it goes on, the more aware of it I become. It is a subtle thing, this envy. I wish for simple things: casual conversations with other mommies while J-man plays with the other kids, not needing to hover around him to make sure he is safe... being normal.

Truly, these are small nuisances, and when you think of all of the sadness and tragedy in the world, it ain't no big thing. Still, GEMM can be self centered and bitchy, and her ever present voice still there... she is not who I want to be, but there she is anyway.


(note BB followers!  I really did write this on Monday, but by the time I got home from work and got to a computer it was Tuesday at 12:18 am.  Forgive me!)

IEP Alert Level: Low

We had another IEP meeting last week.

What is it about these meetings that freak me out so much? 

Allow me to catch you up to speed on where we are in the whole world of IEP.  J-man is getting his speech and special-ed teacher time at his wonderful child care center, J&J.  His J&J teacher also works with him within the classroom and has been involved with implementing his IEP.  We go two days a week, and so far he is doing well.  Come summer, he will get three observational sessions with the District representative (a teacher?  a speech therapist?  who knows.... apparently they don't know either... *sigh*).  The purpose will be to check in on how he is doing and what recommendations those staff can make to deal with issues or concerns that may come up over the summer months.

And that was what the meeting was about:  Summer plans. 

The transition from our Birth to Three staff to our current staff has been a bit of a struggle...for both J-man and myself.  Of course, Kristin was outstanding.  But it is also that the new folks just don't know him... and me... very well.  And I worry that they look at him with a "glass is half empty" kind of look... read him in the worst possible way, the worst possible light.  I am not saying they do, just that I worry they do.  So the other purpose of this meeting was to do a little "now that you have worked with him a little, thoughts?" kind of meeting. 

So, we started out the meeting with one missing:  The Special Ed teacher.  Doesn't bode well, does it?  But we go on with our Speech therapist, the J&J staff, and us.  We went through the goals and where he current stands (informally).  It was good... our speech therapist had just had a really good session with the J-man (he has been slow to warm up with her) and was able to get some good information from our J&J teacher about other things she has been working on.  I think she was surprised at how much he is doing.... because he rarely does it for her.  I chalk that up to the time of day and her being new.... he just isn't a morning person, and doesn't give it up easy.  He makes you work for it....

It was also wonderful to hear what he is doing in the classroom, and how much his J&J teacher appears to love him.  She glowed when she related stories, and I never got the sense that she was overwhelmed or lost when it came to working with him. The J&J staff also related their summer plans... they are changing the configuration of their room to accommodate a lower teacher-student ratio.  J-man keeps his favorite teacher, but now it will be only 1 to 7 versus 1 to 10.  Color me THRILLED!!!

We discussed goals for summer, and then move to the fall.  And then she dropped the bomb...  she had placed J-man on the list for the school district preschool for the fall.  Even though she knew... and admitted she knew... that we planned to continue at J&J.  Lucky for her, Daddy had already left the room with J-man.... he might have come unglued.  She (hastily) made her case:  if he got into one of the classes with a specific teacher she knows and thinks very highly of, it would be wonderful and we should go for it.. she said "Kristin-like" wonderful.

So GEMM stayed in check and I listened. 

She said he didn't know what class he would get into, because that is based on busing....

"Hold up,' I said, "No Bus."

"Oh, well you could drive him, but he would probably love the bus." She stated.

"No bus. Period" I said.

Are they on crack???

So basically I am in a bit of a holding pattern.  We are thinking about it.

Now, before you start screaming at your screen "What about J&J?!?!?!".   We won't leave them....  this would be an add on.  He loves J&J and I love J&J and that is that. 

Good meeting.  Confusing meeting.  Not sure what to do next meeting. 

Lucky for me I have some time to decide.

Angry. So very very ANGRY

It has been a while since GEMM has been out, fiery head and all.

But congratulations to Family Speech & Therapy Services in Andover, MN. You have managed to wake her up and piss her off. Me too. My husband too.

For those of you who don't recall our previous issues with Family Speech, you can refresh your memory here and here.

And so, we thought that chapter was closed?

Oh no, think again!

Today, we got a bill for $90. For 2 days missed at the end of December during J-man's period of green-snot sinus infection (it is now APRIL). It was this illness, and subsequent inability to reschedule appointments with any ease, that led us to quit Family Speech. Now, I had discussed the issue of the first day with the Director and she had agreed to "let us slide". The second day we did manage to reschedule one day with the OT, but the speech options were lean (given the holidays) and the fact there were only 2 days in a week we could make up the sessions (they are not even open on Fridays). AND J-man already had preschool those 2 days, which meant there was only a few hours in the evening that we could schedule. No openings, however. The ABSURD nature of this policy led us to quit Family Speech in Andover. Their business is NOT family-friendly at all.

ANGRY. So very very very ANGRY.

So let me make this clear, Family Speech in Andover. We are not going to pay. EVER. And I am going to make it my mission to let everyone I know about your absurd policy. I will also make it a point to let them know the multitude of OTHER LOCAL AGENCIES they can go to get speech and OT services that do NOT have a crazy-ass policy and completely non-family-friendly business model.

Here is the list I have complied so far:

1) Associated Speech in Arden Hills, MN (our new speech home... and he makes progress here!)

2) Kid Abilities in Shoreview, MN

3) St David's Child Development in New Hope and Minnetonka, MN

4) Kenny Kids in Coon Rapids, MN

5) Children's Therapy Services in Maple Grove, MN

This is only 5 of the multitude of other places.

Give these places your business. Or others who are reasonable, who care about families.

And Family Speech, if you don't think word of mouth matters, think again.

One for Team J-Man

I know you have been waiting.

You have been wondering.

What happened?

Did we get what we asked for?

So let me take you back to last week, Meeting Day. Head Honcho leaves with promises to "look into" what they could do and if they could "work out" an exception, and to get back to me as soon as possible. And she did. The next morning I received a call from Head Honcho, and it goes something like this (note liberal use of paraphrasing):


HH: Good morning. I wanted to let you know that I have looked into the issue of getting J-man summer service at his child care....

Me: Yes?? (note hopeful sound in voice)

HH: ... and I consulted with Advocacy Agency and two other school districts and they all said that summer sessions are not required to provide those services, so we will not be making any accomidations in the plan that we can provide. We can offer your son ESY in a special needs classroom.

Dead silence on my end.

The Green-Eyed Monster Momma woke up, stretched and muttered "What the *%$....?!?"

HH: ... I know this isn't what you wanted, but it is what we are willing to provide...

GEMM: So, what you are saying is that you just called Advocacy Agency and they said you don't have to do it? And you aren't going to try to help us ...?

HH: Well, yes... you may call Suzy Advocate and talk to her yourself. Her number is .....

GEMM: Yes, I will call her and get back to you. (note cold tone of rage in voice)

So, GEMM calls Suzy Advocate. After an hour of discussion (or arguing... whatever) with Ms. Advocate, she has basically told us this: Because the Extended School Year Rule does not address Least Restrictive Environments, they don't have to comply.

What?!?!

Basically, the argument is that the rule doesn't talk about it, so they don't have to do it?

To me and GEMM, that is complete BS.

I called the Department of Education and talked to the specialist there. I explained the situation, and my confusion about why they would say that they did not have to comply with IDEA/LRE in the summer. She laughed. I asked her if she could provide me with something that explains it. She said "Well, the reason you can't find anything is because there isn't anything! That is not true, and if I was you I would request a mediation meeting" (fancy talk for a sit down with the Department of Ed and hash it out... not to be confused with a Due Process meeting, which is bigger and scarier).

'Nuff said.

A little research later (and lots of Law reading), we wrote a Letter. Allow me to dazzle you with just the highlights:

J-man qualifies for ESY via the "Self Sufficiency requirement. Specifically, J-man needs to maintain skills regarding his IEP goals for social development and communication as reflected in Minnesota Administrative Rule 3523.0755 Subpart 2 D 6 'development of stable relationships with peers and adults" and 7 "basic communication".

ESY is able to comply with IDEA 2004 requirements for Least Restrictive Environments. J-man's educational setting does continue into the summer. Additionally, Minnesota Rule 3525.2335 governing Early Childhood Program Services, Alternatives and Settings states in Subpart 2 B 3 that "A school district must provide direct and indirect special education services by district special education staff attending a community based program". There is no stated waiver or exception for ESY services noted in this or any other rules. Additionally, nowhere in the ESY Rule is there any reference that suggests they are exempt from complying with the requirements of IDEA 2004 for a Free Appropriate Public Education. Indeed, the Minnesota ESY rule apparently only addresses criteria for these services, not the services themselves, and therefore should still need to comply with IDEA. Additionally, IDEA states when implementing ESY services the public agency may not "unilaterally limit the type, amount, or duration of those services".

Yeah. Bite me.

It was sent, and we waited. And waited.

And today... SUCCESS! Apparently, they have found a way to "work it out" for us.

Yep, I thought they might.

Most excellent.

GEMM, Kicking @ss and Taking Names

When GEMM rears her head, it is rarely a welcome thing.

However, sometimes her fire is just what is needed.

As I suspected months ago, the attendance policy at Family Speech became a problem. After 6 months of not missing ONE Speech or OT session, Jonathan got sick last week. He oozed green stuff out of his eyes and nose. He ran a fever of 102. He ended up on antibiotics for the second time in his life. He missed one session. ONE!

I called the day before and told them he was sick with fever and oozy green stuff. The receptionist (whom I admit annoys the crap out of me) immediately said, "So when would you like to reschedule to avoid the cancellation fee?". I proceeded to inform her... yet again... that we felt that the policy was unreasonable. She was unmoved. I informed her that we already attend twice a week and the other two days he is in daycare all day. I said the only time he could possibly come was after 4pm on those days.

"Couldn't he miss daycare one of those days?"

"Errr.....no"

"Well, I guess we just have to put you on the waiting list for a cancellation."

Well, swell. Just what I want, to sit on some waiting list to make up a session with a therapist Jonathan doesn't know for a session we really don't need to make up.

Emails flew. Voice mails were left. And management would not budge on the policy.

Well, that is not entirely true. The manager stated that they could make "an exception" to the policy if no time could be found to make the session up. And that is when it hit me... basically, this whole policy is about control. Now, for them, they want to control their money stream. They want to be the one who call the shots. They want the power to decide what is.. and is not... a 'good excuse'. And they want us to bend over and bow to their will.

So we quit.

What they failed to realize is that they really don't have any more control then we give them. They can create all the policies they like, but WE control the purse. I am so angry that there hasn't been a general uprising by the other parents who attend their office. Most of them probably assume they have no control, no choices... just what the management wants. Talk about taking advantage of vulnerable families.

With GEMM on my side, I am absolutely determined to not allow people more power over our family then absolutely necessary. I encourage all to do the same.

When ECFE Breaks My Heart, Part 2

(for Part 1, click here)

So, there I am, choked up, teary eyed and embarrassed beyond belief. I am not a huge fan of crying in public. In response to a question regarding how I knew something was "off" in Jonathan's development so early, I was explaining that... while everyone seemed to think I was nuts... my previous background in autism gave me some insight into the 'red flags', so I pursued assessment earlier than most. And then, the inevitable comment:

Lead Teacher (paraphrasing): OH, God meant for you to be Jonathan's mother! What a blessing for him!

Sigh.

I have heard comments like this before:

God picks only special parents to take care of these little angels...

I could never do what you do.... you have been chosen to a higher purpose.

God only gives people what they can handle, and you are meant to be his mommy.

These special little angels are sent here to teach us something.

Ok, let me explain something to any dear readers out there who do not have special needs or disabled children.

Don't say crap like this. EVER AGAIN.

Now, I think people are trying to say is that they think you are a good parent and they think that the child is lucky to have your support and love. Cool.

But this is what I hear:

Apparently, you believe that God has rewarded me for my education, training, and desire to help others by giving me a child with a disability so I can experience the sadness and anguish that causes. If I had just quit school and worked at Wall Mart I would have a "normal kid". And, of course, because YOU don't have all the fine virtues I have, you are safe from ever being 'blessed' to have such a special child. Also, only people who are good and educated and "capable" have disabled children, because God would never give an idiot a child like with a disability. It would seem that if you ever did have a child with a disability, you would give it up for adoption or leave it in the snow, since you could "never do what I do". And thank goodness God gave him to me to raise, because apparently all disabled kids are here to teach you how to be a better person.

Let me make this very clear. I am no different than you. Any parent .... ANY PARENT... could be in a similar situation at some point. You do what you must. You rise, or not, to the occasion. I do not believe God gives special needs kids like some kind of "gift". Frankly, that would just make me pissed off at God. Sometimes, shit just happens. God, or Allah or the Universe might be able to lend me a little strength, but I don't think our lives are like some massive chess game that is under some kind of master control. There are plenty of kids, special or otherwise, with crappy parents who shouldn't have children. That is just how the dice rolls.

I have no superpowers. There is no difference between you and me. You cannot construct some magical fate to separate my reality from yours. I am not chosen. I have and will continue to make mistakes. I may not be able to handle this. Do not assume I.... or any other parent of a special needs kid.... is ready, willing and able to handle this.

Our kids provide an opportunity. We can learn from them. But don't give them the JOB of teaching us. They have enough on their plate. Each of us has the opportunity to learn compassion, understanding, strength, courage, and justice from all the events of our lives. And maybe someone will learn some of those lessons by knowing Jonathan. But that is not his job. His job is to be Jonathan. To make the most of his life. And my job is to help him because I am his mommy and I take my job seriously.

Jonathan might have gotten lucky to have me as his mom. And I am lucky to be his mom. But we are as real as you. We could be you. And when you accept THAT, you will truly learn how to have compassion and understanding for us.

When ECFE Breaks My Heart, Part 1

Last week, I cried at ECFE.

In my defense, I had a long night at work the night before, was having some issues with back spasms the last few weeks and had taken a muscle relaxant (Evil Flexeril) the night before and thus had a very bad Flexeril hangover. (BTW, I hate Flexeril) In addition, the week had been long and somewhat stressful. We received Jonathan's re-evaluation from the school district, and while I am not going to go into the details today, needless to say there were many 'numbers' that made me sad. Not that he is doing poorly... actually, he is doing great! But to see how delayed he is in black and white...hard to feel good about it.

Ok, so I have had my issues with ECFE. But generally, it has been going well. However, when I walked into the parent classroom and saw the words "Language Development" written on the blackboard, I knew it was going be a quiet day for me. Since I was already feeling like ka-ka, "being quiet" wasn't going to be far from the mark anyway.

My resolve: Just keep my mouth shut. Do my best to fade into the woodwork. Find my happy place.

Yeah, right.

So, the question posed: what are your kids doing, saying, etc?

And let the brag-fest begin!

It seems petty to be jealous and upset about these things. But GEMM doesn't care. Her giant fiery head rears itself at time like these, and the throat closes, stomach acid churns, and I become an expert on the lines of my hands. Goooo to your happpyyy place..... happppy plaacee...

And then, the teacher turned to me and another 'special needs' parent and made a point of asking us what our little ones were doing. It is well known we are the 'special needs' parents, and J-man's issues are known. I was prepared. I had my script. I rattled off where we were, while aching inside because I knew... as it came out of my mouth... that it sounded bad. Real bad. But it is a script I am used to delivering and questions I had heard before. I could make it!

And then one mom asked me "And how are YOU doing with all this?"

Let the waterworks begin.

I just opened up my mouth and nothing came out. I truly didn't know what to say. No one asks me that. Not really. I just wasn't prepared. I honestly am not even sure what I said, I just teared up and mumbled something and who knows... I probably babbled. With my face in a tissue.

It just snuck up on me.

It is funny. Just when I feel like I have got it together, am working toward some level of acceptance... I find out it is just a lie I tell myself.

As the Green Snot Flows...

What, Me Worry??

Jonathan is starting a preschool daycare this week.

Not the original fabulous place we had hoped for; alas, that place required that we also provide a PCA or Respite Care worker, and we could not afford that. So, we decided to look around some more and found our new preschool daycare: Jack and Jill Child Development Center. What won us over here? They incorporate Sign Language in ALL of their classes. That is a definite plus. Also, because it is in our school district, our Early Intervention teacher can work with him there. A BIG plus!

So why am I worried?

Probably because I am an overprotective, hyper-controlling, crazy mom?

We visited today for the first of two 'transition days'. The first day (today) we visit the room and let him play with the kids. Tomorrow (day two) I drop him off for an hour and see how it goes. On Thursday he has his first official day. I think my heart might stop.

Today went well. He had fun, and even sat down for circle time (albeit not in a circle... more in the middle of the circle). However, two key things made me a little nervous:

1) Snot. LOTS of snot. Clear snot, green snot, wet sloppy SNOT. Now, intellectually, I KNOW that he will get sick from all this exposure to other kids. This is just inevitable. And no doubt it will do wonders for his immune system. J-man has always been lucky to be very healthy. But soooo much snot..... what are we asking for?!?!?!

2) The Toys. And no, this isn't a tangent on the whole snot-germ relationship. The fact is, we are starting Jonathan out in the intermediate toddler room. We are doing this because the teacher-child ratio is lower, and they don't have expectations that he has a CLUE to what he is doing. They are there to teach circle time, basic routines, etc etc. And many of their kids are also new language learners. So we are hoping this room holds the best possible situation for his early socialization and language.

BUT... and I rarely get to say this.... he is WAY more advanced than their toys. He plays with legos and duplos, not big blocks. He does 24 piece interlocking puzzles, not wooden five piece non-interlocking puzzles. He plays with interlocking train sets, putting together the rails and train together. He plays on big kid slides and climbers, and will want to go on those instead of the 'baby area'.

So, I am extremely hopeful that he adjusts wonderfully, learns routines like a champ, and can 'graduate' to the preschool room before too long.

Where he belongs.

As GEMM lurks...

If you understand why this photo

scares me, then you "get it".

The Green-Eyed Monster Momma is always lurking in the shadows. Sometimes her voice is a mere whisper in the void. An edge of sadness, loneliness or guilt that taints me. On good days, in good times, when Jonathan is doing well and we are seeing progress, she is faint and weakened. But she is always there, ready to rear her head and pull me down into the depths.

This weekend, she really got her hooks into me.

J-man and I went up to my parent's cabin this weekend. It is lovely... cool and green and relaxing. Jonathan loves to run in the yard, around the cabin and in the woods. But he most especially loves the water... to go on the dock and on the pontoon boat, look into the water and feel the waves. He is no happier when we are at the beach; at the water's edge, splashing and playing with the plastic boats. It is a great way to spend a summer weekend.

The cabin is located near some family friends' cabins, which makes for a lot of get-togethers and BBQs. The families work on projects together, go out boating together. I wouldn't be surprised if my parents retire near these friends and grow old together. These are lifelong friends of my parents. I grew up with their kids and they all have children of their own. Three generations of friends that are practically family.

Generally they are aware of Jonathan's issues. Of course, they do not know the depth and breadth of his delays, but I have explained briefly what is going on with him. Basically, I get pretty much the same response I get from everyone who isn't around Jonathan that much.... apparently, I am over-reacting and he will grow out of it. After this weekend they may refine their opinion... but then again, denial is a river that runs very deep.

Last night we were invited to a BBQ at their place. Jonathan was being a pill. His ability to tolerate the word "no" is very small and limited, and his temper tantrums are a work of art. I also think he was overtired and overstimulated by all the people and activity. He wanted to go to the water, to the boats, and get away from everyone. So, he and I sat on the pontoon boat at the end of the dock and watched the shore from afar. Adults chatted, children ran and played, a bonfire burned bright. And I sat alone on the boat with my son and felt so isolated and alone.

As it got darker and closer to dinner, I decided to bring Jonathan up to the house and endure the tantrum. Jonathan has a bit of the drama-king in him. He can throw himself down on the floor with the best of them. I have found that the best response in no response. Sit him down and let him rage... ignore and it will abate over time. Alas, the old ladies in the room (of which there were four) felt a need to try and 'fix' the situation. Advice whirled past me. Firmly, I said no... let him be... and thankfully my mom backed me up! So there I sat exhausted, my non-verbal tantruming two and a half year old son on the floor next to me.

I am used to being around other children of the same age as Jonathan who are developing typically. It is to be expected, and although it often brings GEMM out of the shadows, it doesn't generally fire her up. Rather, it comes into focus how behind Jonathan is, and a certain amount of despair fills my heart. But I have gotten better at pushing that aside and going on with the hope that someday those differences won't be as stark.

This evening was no different. Two other toddlers roamed around the cabin, one six months younger than Jonathan and one six months older. Both perfectly verbal and playing appropriately. They offered him toys and snacks (at their grandmas' urging), all of which we rejected with a whine and a flop by Jonathan.

One of these grandmas... a family friend of old who is not really known for her sensitivity and tack... was able to rouse GEMM to a full fury. As Jonathan lay on the floor, unengaged and acting so terribly 'autistic-like', this grandma called to her granddaughter and said "Hey Susie*, tell Pia 'I love you'."

And she piped up in this sweet little voice, "I luv you".

This 'old friend' laughed and said "Isn't that the sweetest thing you have every heard?".

And I think every organ in my body stopped.

It wasn't that Susie said it. She is very verbal. It is that her grandma... this 'friend'... prompted her to do it. To me. When my own son might not ever be able to say it, who was currently laying at my feet and moaning. It felt like a slap. It felt a deliberate 'na-na-ne-na-na'. Even GEMM was stunned. My escape couldn't be fast enough. I regrouped enough to make our excuses and bale. And as soon as I hit our car GEMM came out, crashing through my body and soul. There are no words to explain.

Later my mother said that she was sorry... that this 'friend' is flighty and non-sensibly and doesn't think. All true. But cruelty is still cruelty, even if unintentional. I have a 1000 things I wish I would have said... have done... to respond. I wish I had let GEMM out to do some damage... to inflict a little of the pain I felt. I didn't and I won't. Instead it will nest in me... and I fear what might grow.

Pia

*Susie is the name I have chosen for all cute kids who are supposedly better than the J-Man. If your name is actually Susie, please do not be offended.

The Return of the Green-Eyed Monster Momma (aka GEMM)

Scene: ECFE Class, Friday

Characters: My alter-ego, Green-Eyed Monster Momma (GEMM), Jonathan, and our class of mommy-toddler dyads.

The Story: Every Friday we go to an Early Child Family Education class called Toddlers and Twos. It is a mommy-toddler class where we (the mommies) play with the kiddos for about the first half of class, and then“break away” for the second half for the ‘parent education’ portion.

I have to admit, I have a love/hate relationship with this class. The people are lovely, the kids are cute, and Jonathan needs the social interaction. And I think he enjoys it, the change of pace, the new toys, and even the activity from the other children. He especially seems to have a love/hate relationship with a little boy, ‘Al’. They watch each other and push each other’s buttons. It is really cute and really normal. On the other hand, the ‘parent class’ portion can be a little bit of torture. First of all, the class itself usually covers a topic that is well outside of Jonathan’s Zip Code. For example, the following: potty training (doesn’t know the concept), discipline and time outs (not even close), teaching about stranger danger (uh, really?), and how to encourage your child to help with chores. Seriously, never do I feel as disconnected and inadequate as a parent as when I listen to these moms talk about the things they are struggling with and managing to get their kiddos to do (Little Susie will put away her shoes and jacket, but I just can't get her to wash the dishes yet!).

Well, we hit an all time low.

Today, a mom in my class came in and started telling the following really cute story:

'So, 'Susie' has been peeing in the potty for about a month now ('Susie' is 22 months old, by the way). But ya know, she has never poo-pooed in the potty (yes, they use words like poo-poo). So this morning she told me she had to go potty, and while on the potty she had a bowel movement!! I was sooooo excited, but little 'Susie' was very upset because she wasn't expecting to have poo-poos. I said to her " you must have been very suprised". And she responded "Oh Mommy, I shockeded!". Isn't that just sooooo funny?!?!'

At this point, GEMM reared up her ugly, pissed off head and tried to crawl out of my body to tear this mom's eyes out. She didn't. I laughed along with everyone else, while trying to curtail the seething rage that GEMM was inspiring.

Not only is Little Susie potty trained.

Not only is she now poo-pooing in the potty.

But she is having conversations with her mother about her emotional reactions to poo-pooing in the potty.

Great.

I'm going home.

Pia