I Do Haiku

Apparently, I do Haiku.

I won!!!

Ok, so I woke up a wee-bit crabby and under the weather.  I did the typical morning routine with the quickie glance at Facebook and email, and there it was...  the link to the Mother Words blog.  A winner had been chosen.  And it was ME!!!

My frown went upside down.

Funny how something so small and silly can just brighten your day, ehe?

A Quickie

Showing off his Saturday morning puzzle skills

The J-man was sitting in bed with us watching Veggie Tales. Now, we used to watch the Veggies regularly, but stopped a while back because they "lost their luster" for the J-man. But today, in an effort to get another 15 minutes of oh-so-precious-Saturday-morning-sleep, I popped in Lyle the Kindly Viking, and hoped for the best. And as the strands of music for the opening number of Lyle started (it is a musical Veggies, for those uninitiated), Jonathan started to sing. Not every word, not by a long shot, but first one word.... then another... and then anticipating the next word, another. By the third word my hubby and I were awake and looking at each other with shocked awe.

So much for sleeping in this Saturday!

The One Where I Ramble About Stuff I Don't Know Anything About

Confession: I am now going to talk about something I know very little about.

Homeschooling.

In fact, I can sum up what I know about homeschooling by referring you to the TLC show "19 Kids and Counting" with the famous Duggar family. That's it.

I have always been a huge champion of Public Schooling. I, myself, am a fine product of the public schools. And my family and my husband and his family. I have never been a huge fan of private schools. When I lived in Virginia it always just felt like another way to segregate, because only people with money can go to private schools. Don't have to hang out with the riff-raff poor, and certainly don't have to pass bills to pay for that public school funding. I don't know, it just always bugged me a little. Religious schools were a little different. I could get how a family might want to immerse their child in a religious education. But, again, I have always believed that educating children in an atmosphere accepting of differences and tolerance was a good thing, and again... the whole segregation thing.... well, private school just never was my thing.

And Homeschooling? Well, that was what people who were too paranoid to go to private school did. It seemed really really fringe.

Until recently....

I am a member of multiple special-needs child message boards and websites. And regardless of whether the children have autism, learning disabilities, speech delays, or other significant medical and developmental needs, I have noticed one consistent trend....many of them are homeschooling their children.

I mean, A LOT!

Based on the stories I read, it is largely due to an overwhelming sense of frustration with the school systems, especially related to getting appropriate services for their child. There is this general sense of acknowledgement by these parents that the school either:

A) are not up to the task, or
B) don't care about their child's needs or even understand them, or
C) won't listen to and partner with parents, or
D) all of the above.

So they pull their children out, teach themselves to be teachers, and take on schooling at home. And although I am still a fan of the public school system, and although I believe they can be great, I sorta get these parents.

I guess you can only fight so many fights before you can't fight those fights anymore.

What I wonder is this: Do school districts care that these families have so little faith in them that they choose to do it themselves? Do the administrators worry? Do they reflect at all on what their mission is and how they have lost the faith of these families? Or do they chalk it up to "crazy parents"?

I don't know, but it worries me. There is a lot that is wrong with the educational system, and people WAY smarter than me can discuss it ad nausem. But I want to believe that at its core it is still good. And slowly, my faith is being tested.

Do You Haiku?

So, as you know, I have been taking an online writing course called Mother Words. It has been great, if a little challenging. But what a fun experience! Anyway, Kate (my bomb-diggity teacher) is having a Haiku contest on her website. The Theme is "what no one told you", and the prize is a $10 gift certificate for Amazon.com.

Now, for those of you who don't Haiku, it is a three lined poem with lines of 5-7-5 syllables. Here is my submission (and my first ever Haiku):

My heart left my chest
In tiny jeans and t-shirt
Walks around, exposed

I submitted another one as well, but you will have to go over to Mother Words to see that one.

So, do you Haiku? If so, you have until Friday to submit your own. Or just cheer for me!

Oh, and two big thumbs up on her class. If you have any desire to write, it is well worth your time, mommas!

New Website!!!

Hi all!

Just wanted to let you know we have a new website:  http://www.thecrackandthelight.com/  

I believe that the old site will redirect you to this site for a while, but then it will go away (in about a month).  So if you have us in your favorites, change it!  And keep coming back!!!  We love our friends!

Pia

On Why Twinkle Twinkle Is Such a Big Deal.

A blast from the past: J-man at a year.

Before J-man's first birthday, I was farting around on the Internet and I came upon a video via YouTube. I can't remember the context exactly, except it was a baby about Jonathan's age, sitting in a high chair with his mother in front of him. It was like one of those America's Funniest Home Videos. Anyway, in the video, this little girl was vocalizing the song Twinkle Twinkle with her mommy, her little hands in the air fluttering like twinkly stars. She wasn't singing exactly... a word or two maybe... but she followed the pitch with her voice. And those hands followed along, so twinkly.

It was that day I really felt something was wrong with the J-man.

It was an ugly day.

Not only had he never done anything like that, he had no interest. And lemme tell you, that day I tried. It was then that I really realized something was amiss. Now, one could say I jumped the gun. Not even one year old. But I think when a mother feels something is off, she is probably right.

And you know our story up to now....

So now, when J-man flutters his hands like twinkly stars to the tune of Twinkle Twinkle, it feels like magic. Like a blessing. Like I can breathe.

What is a Kiss Storm?

No, not the Kiss

Actually, closer to this Kiss:

(I wish I could take a picture of J-man doing this!)

 

So, another good day in orbit of my J-man.  After his bath and jammies, we were hanging out in the bedroom watching Goodnight Moon & Other Tales (another wicked HBO kids show).  He decided in the middle of it to give me a kiss.... or as he says, 'tiss'.  And another.  And another.  I lost count at eight.  He grabbed my cheeks and planted wet one after wet one.  He would pause, say 'tiss', sign kiss, and then plant another one on my pucker. 

He learned this from me.  I often barrage him with kiss storms, covering his little cheeks with kisses.  I knew it would payoff eventually.

Discoveries

Despite some of the frustrations, disappointments, and worries, there is something about being J-man's mom that is absolutely wonderful.  As his mom, I don't... I cannot.... ignore the small moments of wonder, or newness. Of discovery.  Those moments just appear like magic and they have such strange purpose and beauty. 

J-man learned to flush the toilet yesterday.  He tried to put the shampoo bottle down the toilet, but Daddy caught him... with this sly look on his face.

J-man learned to get in and out of the tub yesterday.  He crawled in and out, over and over.  He streaked through the house, his little bum wiggling wiggling wiggling as he was giggling giggling giggling. 

J-man did not want to put his jammie shirt on, so he took it off and (not knowing I was watching) hid it in my drawer.  When I questioned him as to the location of his shirt, he sneaked a look over at the drawer, grinned, and ran away.

And last night, as I sang "Twinkle Twinkle Little Star" while flickering the lights on and off, he raised his hands up and fluttered them like little stars and used his voice to "sing along".  For the first time.

Small moments that might get forgotten (or not even noticed) by others.

But not me.

Saturdays are for Swingers

Do you remember the freedom of just swinging?

It is truly the essence of being a kid. 

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.

Puzzle Man

Our camera has this video function that I never was able to figure out. 

But I think I got it now.

So here is a video of the J-man finishing up a new puzzle.  It is a 48 piece SpongeBob SquarePants puzzle.  Note the "tongue of pride" that comes out at the end. 

Yeah, be impressed. 

A Little Curious

We have HBO.

I know, I know. No one needs HBO. Unless you are addicted to True Blood or The Pacific.

We got HBO when we moved because it came free as a part of the introductory cable package, and sometime this summer it might be time to let it go. But in the meantime it feeds my hubby's True Blood addiction.

Ok, so on HBO there is this show called "A Little Curious". Here is the description from the HBO website:

"A Little Curious" is a fast-paced mix of animation and live-action vignettes, focusing on three concepts to be treated in many different ways, exploring the different possible meanings of these concepts. For example, in one edition titled "Loud, Soft, Shake," the concept "soft" could mean a comfy blanket, a gentle whisper -- or an old sofie like "Doris the Door" fondly remembering her childhood on a stoop in Brooklyn. "A Little Curious" allows preschoolers to explore the humor and delight in all the meanings of these concepts, broadening their vocabulary and deepening their understanding of the world around them.

J-man loves this show. The music is jazzy, the action fun, lots of singing and general silliness. He loves it.

We have a few episodes recorded, and my hubby called me at work to tell me this story. Apparently, they were snuggling on the sofa watching one episode in which the concept word was "Tight". In one scene, Mop is tucking Bob the Ball, Little Cup, and the Shoe Girls into bed. ( I didn't say the show made sense ) As she is tucking them in, she tucks each one "tight tight tight". At the moment, J-man grabs my hubby's arm and wraps it around him, saying "tigh, tigh tigh".

Awwww.... cute right?

Oh it gets better. About an hour later, at bedtime, my hubby is laying the J-man down. J-man pulls on his hand to bring him down and says "tiss" (kiss). Daddy gives him his kiss. And then he pulls him down again and says "tigh, tigh, tigh".

He wanted him to tuck him in!!!!

Tight Tight Tight!!

I know!!!! To take that concept, keep it in his brain, say the words, and use it in context!!!! After only one viewing.

God, I just love him.

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!

:)

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.

Wow

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!

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.

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...

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.

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.

Battle Interuptis

I am exhausted and rocking a major headache, so I will give you all a brief low-down on our school district meeting and go to bed.

Essentially, here's what happened. The entire team (Birth to Three, Three to Five, and the Head Honcho) came to the house and we all sat around the table and pow-wowed. The Head Honcho came out strong and a wee-bit hard-assed, and if I was anyone but me I might have caved at that moment and laid down like a rug. She informed me, with a lot of academic high-flalootin programy wordage that they are not required to provide the same services during the summer, they are not held accountable to the Least Restrictive Environment requirement, and that what they have to offer is good enough. Now, this is not what I have read, or heard, and I have done some research....

I didn't cave. I am not sure I came out swinging, but I do believe I made my point clear: J-man greatly benefits from where he is, will not benefit from moving his services to that location, they cannot provide what he needs there, he does qualify and should be able to get services where he is at. I explained that while I understand they don't have the program he is in during the summer, they should. And that, given his unique needs and situation they should make an exception to the hardcore position they have, since what we are asking serves him best and the other option does not.

My hubby popped in and provided our united front, plus a steely eye and presence that says "we mean business". Plus a few well placed (yet polite) words.

She didn't cave.... exactly. What she said was that she would "look into" whether they could make an exception for J-man for the summer. She needed to "consult with others" and will get back to me "soon".

So where does this leave us? Not sure. I know that if they turn us down our next step is to go into mediation with the Department of Education. While we did not out-and-out say we would take it that far, I am fairly sure she got that vibe from us. And we would... in principle alone. However, I find it utterly amazing that we might have to go there.... for 3-4 visits over the summer??? Really??? Don't they have better way to spend their time? So, I am hoping that they can "work something out" so we really don't have to make a mountain out of molehill.

Link UPDATE: For those of you interested, this is a wonderful commentary: Into the Mainstream

Books, I love. And Books I love.

Books. I love books. I always have loved books. As a kid I used to go to great lengths to read my books: under the covers with a flashlight, in the car, in the bathtub, at the movies. Yep, my mom will still tell stories about how I used to bring a book to the movies because... heck.... what else is there to do before and after the movie? And what if the movie is boring?

Exactly. I was... am... a complete, total, 100% geek.

Before I became a mother, I dreamed of reading aloud to my children. I would read my favorite books from childhood... the Little House Series, James and the Giant Peach, Winnie the Pooh. We would snuggle together in bed and stay up far too late reading stories. I would cave into all their pleas for 'one more story mommy'. A love of reading would flow into them from me, and we would share this one thing always....

*sigh*

J-man won't let me read to him.

I tried to do books at bedtime. I would try and read the words (think board books, people) and point to pictures, and he just wants to turn the pages or look at the pictures. I would just try labeling and he would sometimes watch me, but never expresses real interest. I am sure it is a language issue, plus a processing issue, plus another way to have my heart break. But, he is only three... so there is hope.

However, onward.... to books I love.

My Top Books From 2009

Ok, so this list isn't books published in 2009. Just books I read and really, really liked in 2009. Note: not all of these books are high falootin, fancy shamacy books. Some are just great trashy reads, some are brilliant works of art. I will try and distinguish them for you! Also note... they are in no particular order of greatness. I am not good enough to rank them!

1. Schuyler's Monster by Robert Rummel-Hudson. This wonderful memoir that has really affected me. Touching, funny and entertaining at the same time. See my "review".

2. This Lovely Life by Vicki Forman. This memoir just took my breath away. See my "review".

3. The Mercy Thompson Series by Patrica Briggs. Ok, so the previous 2 books are writing masterpieces. This series is just plain old Brain Candy. But really good brain candy. Pure candy, 100% no nutritional value whatsoever. Think Twilight, but good. Oh, and this is actually a series of 4 books, so it is kinda a cheat... but whatever. Paperbacks are cheap.

4. No god but God by Reza Aslan. Ok, complete geek book. In essence this is a book about the history and explanation about the Islamic faith. I picked this book up after I saw the author on the Daily Show with Jon Stewart. I found this book very interesting and well written. This is a book for the person who just would like to know and understand a little more about evolution of today's Islamic faith and how it effects the world today.

5. The Year of Living Biblically by A.J. Jacobs. Whereas #4 is a serious exploration on Islam, this book isn't nearly as serious. And yet, it is. The author essentially attempts to live the Bible as literally as possible for a year. It is very funny, interesting and educational. I laughed and learned at the same time.

6. Memoirs of a Geisha by Arthur Golden. Lovely novel, just lovely.

7. My Baby Rides the Short Bus by Yantra Bertelli, Jen Silverman, and Sarah Talbot. This is a wonderful collection of short stories and essays from parents with special needs kids. These stories are NOT the "chicken soup for the soul" type of stories, but are hard and real and filled with truth. (Confession: I think I actually read this in January 2010. Oh well)

So if J-man can't appreciate my love of books right now, maybe you can enjoy it a little.

(oh, and if you have any recommendations... pass them on!!!!)

On Meetings and Other Battles

So apparently I am going to become "that parent".

Let me start with the story, and then move on to the rant. It'll be a little more coherent that way.

A few weeks ago we met the J-man's new teacher and speech therapist from the school district. Over the next few weeks we are going to lose Ms Kristin (much to our deep sadness), and Ms Becky and Ms Jane will be working with him at his preschool. Of course, Ms Kristen has set the bar shockingly high, but I am going to remain hopeful that his new teachers will be as excellent.

During this initial meet-&-greet with the new folks, the subject of J-man's ESY (Extended School Year) eligibility came up. Essentially, ESY is summer school in 'special ed' language. And yes, the J-man qualifies. Apparently, however, they do not provide the community based services in the summer like he is getting now. The only way he can get any coverage of either speech or teaching is if we enroll him in their multi categorical classrooms.

Now, we have already addressed the issue of the multicat classrooms. We toured, we considered, and we rejected the idea. The reason he is enrolled at his current preschool is because we believe, strongly, that typical-developing peers are a tremendous benefit to our boy. He has been hugely successful in this environment, and the idea of putting him in an environment that is exclusively with other special needs kids (many of whom have significant behavioral and language issues) does not jive with our goals for him.

Now, the rant.

See, this all goes back to the idea of Least Restrictive Environments and Inclusion. In a nutshell, inclusion is the ideal in which all children learn together, regardless of disability or ability. According to Wrightslaw, the Individuals with Disabilities and Education Act states that the Least Restrictive Environment policy says that school districts are required to educate students with disabilities in regular classrooms with their non-disabled peers to the maximum extent possible.

Dan Habib eloquently deal with the issue of inclusion for his documentary Including Samuel.



I highly recommend this documentary (check out your local PBS station for viewings!)

Now, the issue of inclusion is a thorny one. I know this. Inclusion is difficult to start, requires lots of teacher training, good classroom supports, and a commitment from all involved to make it work. It isn't always easy. Another documentary series, Educating Peter (and later, Graduating Peter), highlights both the challenges and rewards of inclusion (another series I highly recommend).

I believe that whether or not inclusion is appropriate for a child is truly on a case-by-case basis. However, I also believe that.... done well... inclusion should absolutely be the goal for the vast majority of children. And for the J-man... well, this is a no-brainer. His current achievements in preschool, with appropriate support, is crystal clear. Hands down, inclusion is the only way to go. He needs typically developing peers. They help him learn. It is essential.

So now, we get to have a meeting with All-Powerful School District people to argue about getting him some summer service at Jack and Jill. Have I mentioned that we PAY for him to be in preschool... a lot of money...? And we are only talking about 3-5 one hour sessions over the summer to address issues and help him maintain skills?

Yeah.

So I get to be "that parent", and see if I can convince them that his least restrictive environment IS preschool, and they do have an obligation to continue his current programming. Wish me luck, because GEMM might have to peek out on this one.

Bad Days

Like everyone, J-man has good days and bad days.

And like everyone, I have good days and I have bad days.

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Lately, my days have been on the darker side. I am not sure if it is because of the winter blahs or if the everyday grind is starting to get to me. What I know is that I feel sad a lot, I feel frustrated a lot. As J-man develops more vocalizations and some awareness of the need to communicate, he has also developed more temper tantrums, more outbursts, and more stubbornness. Ooooh, he knows how to push buttons.

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For example, today, after a series of outbursts and general crankiness from the boy, I was in the kitchen doing my least favorite chore ever (dishes) and J-man.... for reasons only he could possibly know... climbed on the table and proceeded to dump the entire package of Goldfish crackers on the floor. Now, in the grand scheme of things, this isn't that big a deal. But like an open wound that just keeps getting poked, my patience just fell apart. After what could be termed a complete parental temper tantrum, the J-man and I were both crying. We spent the next half hour making up and snuggling on the sofa.

I am just plain tired of dealing with his delays. I know that other mothers could call their 3 year old to dinner and they would come. They can get their own shoes, own coat, with requests from their mommies. J-man.... no way. Sometimes he seems deaf, and he seems to have zero desire to please me at all. Other mommies just don't have to work this hard all the time, do they?

I don't know how to redirect, regroup, refocus. I feel stretched thin as tissue paper, and more fragile.

Mother Words

Ok, so this is totally off topic, but I just had to share.

I am taking a writing class. Yes, me... a writing class! Why, you may ask?? I have no idea!

Actually, that is not entirely true. I think I have found a lot of solace in writing this blog, and I just want to be better at it. I have no great aspirations of writing an Oprah Book Club best-seller (Hey Oprah, call me *wink wink*), but I like the idea of treating it more like a craft. I'd like people to enjoy my stories and get something out of them.

The course is called Mother Words and is taught by Kate Hopper. Check out her blog here.

Anyway, I may plop a few of my attempts at "real writing" here. I would love feedback if you have the time!

The road is long

J-man has been going to his new speech therapist for nearly one month. Not long, to be sure. But his mouth has been moving more in the past few months than it ever has, making attempts at sounds and words every day. So our new therapist has had some of the best exposure to his new 'skills'.

I asked her yesterday if, given her experience and what she now sees J-man doing, if she thought Apraxia was the right diagnosis for him.

She said yes. Most definitely.

Of course, we both agree that it isn't the end of the story.... there is more going on that just apraxia. But getting a definitive diagnosis of apraxia has been hard because up until a few months ago, he wasn't making enough attempts to say anything. Now, however, she can "see" the oral-motor sequencing problems.

There are days, when J-man is trying hard and doing good, when I feel like maybe we will see the end of this road sooner rather than later. And then there are days... like today... when I just can't imagine how we will ever make it.

Three

Happy Birthday, baby boy!!!

Welcome to Three!

According to everyone who is anyone, Three is suppose to be a Big Year. I have high hopes for Three. I think Three is gonna be Your Year. I don't exactly know what Three has in store, but I see great and terrible things for Three. I am excited for you and the magical Three.

So Welcome to Three.

I love you more and more everyday.

Mommy

Blogger's Block

Daddy and Boy

Whew.

Back from vacation for a few days, I have been meaning to write. And I just can't seem to gather my thoughts in any way that makes sense. So I guess I will just write a little update about our trip and try and come up with something cooler later.

Our trip to Arizona was... for the most part....lovely. The weather was freaky. When we arrived they had just had 3 days of rain, which apparently is freakish. After we arrived, it hailed. And was cold for Arizona.... 40's -50's. Then, it got nice, sunny, and in the upper 50's to low 60's. So that meant J-man could run run run. He was happy.

We saw the sun. He was happy.

He had his first ice cream cone. He was very happy.

Very very happy.

This was Daddy's cone for about 2 minutes.

All was well until the last day. Then the sinus infection... which had been brewing... hit him hard and fast. My once cheery, easygoing little man showed me the meaning of a complete meltdown. And lucky us, we were flying home.

Flying with a toddler with a sinus infection. Mommy was not happy.

So, overall, I give the vacation a "B". Illness and rainy weather aside, it was a good time.

What You're Doing Matters

For all mothers.

Into the Warm

We have not left you, dear readers.

We have flown the coop and are "snowbirding" (for a long weekend at least) in lovely Arizona. My parents, bless them, have fled the cold white winter north to warmer climes for the month, and we are completely using them for the weekend so we, too, can get warm. Too bad for us that we came down during a cold weekend in AZ! Ok, 55 F isn't bad, compaired to the great white north... but it isn't balmy either. Ah well, J-man loves to run outside at least! And we have hopes of 60's before we leave.

Sadly, both the J-man and I have wicked colds. Why oh why, always on vacation?!?! Of course, it isn't holding HIM back. He wants to go OU OU OU.

Stay tuned! Many delightful details of our adventures to come!!

Up High, Down Low

Hey there ladies

Tonight, the J-man and I attended a Family Fun Night for special needs kids at a local indoor park. Think McDonalds Playland without the french fries. J-man loves the place... and because all the families there were parents and children with special needs, it felt like a place we could be totally free. No one had any expectations, just complete open acceptance. How lovely for all these wonderful kids and their parents!

Anyhoo, at one point the J-man saw the candy machine and insistently signed "eat". I got him a few Skittles and we made our way to the seating area. He signed and said "candy" as he munched. One of the other parents seated next to us asked him his name. Of course, he didn't respond.

Then this man, in a friendly way, asked J-man to 'Give me five'.....

AND HE DID IT!

Jonathan high-fived a perfect stranger! And, to make it even better, he went on and did the "up high/down low" part. I didn't even know he KNEW that.

Isn't it just the little things ....?

When Mommy Gets Her Butt Kicked

Here he is, eating my phone

I love the J-man.

Love him.

But he is kicking my booty six ways to Sunday.

Limits: Pushed.

Patience: Tested

Now, I believe that the J-man is experiencing some serious brain growth. He has realized the communication is probably pretty darn important and that.. basically... he sucks at it. So he is frustrated. Impatient. And he is two..nearly three... and thus his favorite activity is doing whatever he wants whenever he wants, especially if mommy doesn't want it.

Ah, finally.... something normal.