Sunday, March 28, 2010

That Voice in My Head

Credit to Ha Designs

A little over a year ago I saw the documentary Autistic-Like: Graham's Story.

I loved it, as I noted in my review.

But ever since then I have had this voice in my head. It sounds shockingly like the voice of the mom in the film. In it she says something to the effect of "Every day I feel like it is up to me to save his life. I am saving his life everyday" (paraphrasing, obviously). Now I am not Catholic. I am not Jewish. But apparently all I need is to be J-man's mom to be able to feel overwhelming guilt. (Note: I am sure that if that mother thought her voice was the Jewish-Mom-in-My-Head she would be horrified.)

I know I work hard to help him. I know I do. But when progress slows down, or stops... or when he changes for the worst, even temporarily, I feel like ... no, I KNOW... that I am not doing all I can do. In the film this mom goes all out. They have every conceivable intervention. They work tirelessly. I am near certain that she doesn't let her son veg out on TV while farting around on the Internet. We do that everyday.

And yet, the more I push the harder it gets. I yearn to just hang out with my boy, to ask him questions and have him answer. To show him things and capture his interest without maneuvering, manipulating, calculating, or guessing.

Can you tell we had a very hard weekend?

Friday, March 26, 2010

New Look for the Crack?

Ok, I am trying a new look for the blog. What do you think? Too girly? Does it take to long to load? Please let me know ... leave me a comment and let me know!


Monday, March 22, 2010

Why Easter Reminds Me of Donnie Darko

I took the J-man to the mall today. There is a pet store, and while I loathe the housing of animals in pet stores, and puppy mills, and all that ickyness.... J-man loves puppies. So we dropped by the mall just to take a look-see.

The Easter Bunny display was there for pictures. I think the Easter Bunny is creepy. I mean, really creepy. So I had no interest or desire to get J-man on the Bunny's lap for creepy picture. And let's face it: Given his response to Santa, I didn't think the Bunny would have much of a prayer.

Oh silly mommy, how wrong you are.

There was no line, so the Bunny keepers wooed him over. I said, with great confidence, that he probably would be freaked out and would want nothing to do with the Bunny. And how wrong I was. He ran up to the Bunny and giggled. The Bunny keepers suggested he give the Bunny "five", and he did it. Then they suggested that maybe they could get a picture of J-man sitting next to the Bunny.


And then on the Bunny's lap.

And maybe J-man could feed the Bunny.

As we left, J-man gave the Bunny a hug. Apparently J-man has never seen Donnie Darko. Good thing!

Wednesday, March 17, 2010

On Good Days and Square Pegs

Oh these days are good.

So stinking GOOOD!

J-man is really starting to blossom. He is working so hard to talk, imitating and mimicking sounds and words... or at least trying. Clearly (or not so clearly) his words don't usually sound like words. But oh, the effort! He has even started to try singing... usually to well-known songs, but still! It is a little startling to suddenly hear him trying to sign along, pieces of words in song. I have come to believe that his motor planning is a big issue. He HATES to "perform on command", even when it is words he clearly knows. But ahhh... the sweet sound of half formed words warms my heart.

He also has become more engaged in so many subtle ways. It is hard to describe, but it can be as simple as taking my hand just to hold it, or rubbing noses with me just for fun. These small pieces of him coming out and saying "hi" might seem silly, or unimportant, but for us they are huge.

A few weeks ago I attended a parent advocacy training seminar. It was two days, 8 hours a day, in hard chairs (oiy, my arse!) and covered a large number of general topics in special education law. It was interesting, if a little long, and I feel charged up to help other parents be able to represent their kids. Go Team!

Anyhow, while at this seminar I had a few interactions with mothers there that put me off-kilter. Now, don't get me wrong... they were all very lovely and very supportive. But I found myself on the receiving end of some 'unwanted' advice and some questionable observations that set me back a bit. Largely these 'insights' surrounded my apparent trip down the river of Denial regarding the J-man's diagnosis (or lack thereof) and how denying my boy the label of autism is somehow crippling him.... preventing him from getting the "true help" he really needs. I was counseled to "not be afraid" of the diagnosis and that I needed to rethink our position.

It took me several days to process these interactions. After some thought, I was pissed. I find nothing more galling than having someone judge my child based on nothing but their own biases. These people had never met my son. They certainly didn't understand why we have are doubts about where he fits. I am not entirely sure they understand the subtle differences that we are looking at when we look at him. And yet, somehow I am failing him?

And how am I failing him? Because I am not chelating him, or spending our savings on scads of special supplements, or on the GFCF diet (oh we tried that once... no difference)? Because we aren't in an ABA program? Are those the doors that would open? Because the way I see it, there is no evidence those costly, massively time consuming (and sometimes highly risky) therapies would work for him. For others, yes maybe. But what IS working is what we are doing right now... a highly supportive home and daycare environment, highly specialized speech therapy for apraxia, and us: loving him and responding to him. He is leading the way, and we are following.
Is it really that crazy to think something as simple as that is working? That voodoo isn't actually needed?

It is true, embracing "that label" can open doors, and for the kiddos that need those doors open it is a gift and a Godsend. However, "that label" comes with a price. Suddenly, the world views him through that lens. The school decides where "he fits". Administrators draw broad generalizations about what is "appropriate programing" for him. Individual teachers may decide what their expectations should be (or should NOT be) and woe to us to try and change that. So we are well aware that someday we may need to go down that road. Then it may work, it may fit. But right now, really, truly, we-aint-lying, it just doesn't fit. It doesn't work.

And so we are Square Pegs. We don't fit neatly into anyone's category. We don't embrace "alternative" therapies out of hand. I actually read empirical research. The Peer Reviewed kind. We are not interested in pushing a label, defining J-man at age three. And thus, we are cast out of many clubs.... the ultimate rebels. Is there no village for us?

But then, J-man has good days. He has GREAT days. So I will take it, and love it, and accept that sometimes you just have to blaze your own trails.

And nod and smile at unwanted (yet well-meaning) advice.

Monday, March 15, 2010

Inclusion done RIGHT

I want to share a series of blogposts on Mom-NOS that have me capivated. THIS is how you nuture children and evolve inclusion. Inclusion, done right, is magic.

Her posts:

Opportunity, possiblity and community

Circle of Friends

A hair-dryer kid in a toaster-brained world

Meanings, feelings and wacky hair

There are more posts to come on this magical day.... but I want to share these with you NOW. For all of you wondering or fearful if inclusion can work for your child, read these and know it CAN. With the right people, and right attitude, it can make all the difference in the world for ALL of our children.

Just had to share...

Friday, March 12, 2010

Slacker Blogger

I just realized it has been a bit since I blogged. In the spirit of feeling guilty, I thought I owed you a little somethin' somthin' to tide you over until I can really blog. So, here are a few cool updates.

1. J-man is using 3 word sentences. Now, before you go having a party and breaking out the Three-Buck Chuck, each and every word must be prompted and 50% of the time he has a hissy fit when we try to get him to do it. But we can get him to say "E-ye wan cone" (ice cream) with a bit of effort. And, I have managed to get him attempt a TON more words, with prompting. He is trying, even though it is hard... so props to him.

2. I think J-man might be able to read. Ok, so that might be going a bit far, but he has... on two separate occasions.... pointed to words and said them. On one occasion, he saw the word 'shoe" in big bold letters, said "sho", and ran and got his shoes. And then wanted to go outside. So, I'm not saying, I'm just saying...... weird things run amok.

3. I got a new car. That has nothing to do with the J-man, it just makes me happy.

So there, now you have something to chew on until I write something really inspiring.

Tuesday, March 2, 2010

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.


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.


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