Thursday, October 30, 2008

IEP Thunder

It is thundering outside right now, and that is how I feel.
The IEP was not ideal. HAHAHAHAHA.
I know that's news to all of you IEP veterans.
I can't stop laughing or crying inappropriately. Oh wait - maybe the crying is appropriate.
The results weren't......terrible....but basically, our principal and superintendent (same person) lied. She lied about letting me see the IEP 48 hours in advance so that I would have 'no surprises', she lied about the dates of the IFSP meetings and phone calls to the rest of the team members there, she lied about funding to me and got very upset when I revealed what I actually know about the funding (I was not supposed to know) and suggested that there was a difference between 'can't' and 'won't', she lied to me five weeks ago (at the IFSP) and said she would try and allow for a transition period for Bubbles from one therapy to another approach, and then when I tearfully said I could not sign the IEP, she grinned like a cheshire cat as she mockingly said, "Well, if you won't sign, then Bubbles won't get services, and that doesn't seem like his best interest."
The school psychologist was another piece of work; asking me weeks ago what I wanted to happen and then recommending just the opposite, challenging the credentials of the organization that has worked (successfully!) with my child for a year, and basically being a dick.

So the results are not horrible, like I said. But they are not optimal, and the whole 'we want what's best for your child' is, predictably, a political word game they play.

I did not sign.
I need to sleep on it.

The lying boss suggested, like a vice grip on my nipples, that I must sign it or 'too bad for Bubbles'.
Lying again, she may have forgotten that I still have one more day before his birthday.
I walked out without signing.



Tuesday, October 28, 2008

My Boy Talk Pretty Some Day

On Friday, just one week after I was tearfully explaining that my child did not belong in a special ed classroom, I took my son to the school district recommended SLP (speech & language pathologist, or 'person', because my vocabulary does not prefer the word 'pathologist') for a school district recommended assessment. Yes, another assessment. Apparently, when the transition from early intervention to school district occurs, the school district has to hire their own person to assess the child, even if the last assessment was just one month ago.
This person (the new SLP) had met Bubbles for less than thirty minutes when she declared that she suspected he was 'quite bright'.
(I grinned; we have 'suspected' the same thing, but that pesky little language bias creates doubt!)
She did a receptive language test on him and he did not stop answering (pointing, but he would add the word if he knew how to say it) until they reached close to a four year old level. I was beaming; it was the first test performed with him (since the school district got involved) that was actually age appropriate and not expressive language biased.
The SLP seemed rather excited herself; she explained that his apraxia was so evident through his oral motor deficits, and that currently it was physically impossible for him to coordinate his language, but that for him it was completely fixable! Because his cognitive ability does not appear to be compromised, it really is an issue of exercising, learning, and therapy. She believes that he might even talk pretty one day! She actually believes that he will; I am reservedly skeptical.
We have never heard any prognosis for children like our little guy, other than 'With the right therapy and hard work, you do the best and hope for the best! Some kids become verbal communicators'.

OMG really? That was the best we could hope for? Vagueness?
What is the right therapy?
Hard work? If he can't work hard then we give up?
Hope is the only thing you can tell me?
The best? That seems rather relative.

Actually, I have to say I have been rather calm-ish with the actual diagnosis, if not with the anxiety of transitioning to the school district and our first IEP. The diagnosis has been a bit mysterious, but we are sure that it is not fatal, and therefore in Gwendomama's world of relativity: Not that bad.
See? The bar was low for this boy.
Just survive, and we'll give you the world!
Luckily he does not ask for the world. Just a steady supply of nitrite-free bacon.

So, to recap: She thinks he can get better and learn himself to talk real good.

Shorter recap: My new guru.

She explained that he could not form certain sounds because of his oral motor deficits. She said she guessed he only ate a few select foods. "OMG!" I said, "HOW DID YOU KNOW?"
We had worried that his refusal of foods was a sensory issue, but that theory never panned out with other sensory issues. Apparently, Bubbles has been eating the foods which are safe enough for him to chew and swallow. His swallow is fine, but his tongue coordination is underdeveloped or non-existent (lateral motion). She watched him eat a lollipop, and holycow did I feel stupid when she pointed out something I always thought was a little strange, but apparently I get used to strange things easily: He stuck out his tongue and moved the lollipop over and across his tongue to lick it. There was not one effort on the part of his tongue as a tool. He can't do it.

To paraphrase the guru: Basically, Bubbles' oral-motor deficits, combined with his apraxia-based muscle incoordination severely hinder his ability to execute the oral-motor movements necessary for speech production. Children with apraxia learn to speak in much the same way as a person would learn a second language (which absolutely supports our argument to keep him in his typical preschool).

She was impressed with his cognitive ability, and he was incredibly charming as well. She seemed impressed with his ability to focus and work (play-incentive-based)I pointed out how nicely he cleaned up a mess he made and complied with most instruction. Because of ABA, my child will be able to work with this person in the most productive fashion; his attention span and focus are rare to be found in your average three year old.

She agreed with the moderate to severe (more on the severe end) of apraxia diagnosis, and claims that this is an area of her expertise and interest. She did wonder, however, why one area of his speech and babbling was so incongruous with a typical apraxic child: He is able to use complicated rhythm and syntax in his play language, while most children with apraxia apparently sound more robotic. I said that sometimes he would be playing and babbling animatedly and then he would stop and turn to me to say something like, "I. Wan. Joos. Pees." in a somewhat robotic voice.
"No," she said, "He really has highly developed inflection and emotion in his babbling. It had to be compensated for in some way....Hmmmm....does he really like music?"
(the ZOMG fairy had covered the room in ZOMG fairy dust)
"Does he?" I sputtered, "ZOMG he is very musical! He loves music! He has been to probably 100 music classes with me too, because I am a music teacher!"
"Ahhhh," she said, "That explains it."


Last week, Bubbles gave us a glimpse of what he knows. At some point over the last month, it all started to fall into place for him - he started to ask questions, narrate, parrot, try new sounds. He will even attempt a three syllable word, as long as the first two syllables are 'firetruck'. Over the weekend, the clouds parted, and language poured forth, streaming into my child and our lives.
Just a sampling:

Where did Daddy go? Daddy, where did you go?

(To Supergirl's friend) Hey! Where your mama go? Why your mama home?

I wan watch a mooo-veeeee? Meeeeease?

Mama! I sit on table! (he used 'on'!)
Me: Bubs, are you allowed to sit on the table?

Fire Truck, Fire Truck, Fire Truck; repeat x 37

(As we turned down our cross street) NO GO HOME! I wan go heh-cop-purs again again again NOW! (I want to go back to the amusement park in Vallejo and ride helicopters again like we did after the wedding last weekend!)

(Today at preschool to some kids messing with the 'special sharing toys' table) NO NO STOP IT! Teacher say NO. You STOP IT.

This is just the beginning. I am so glad that he will be able graduate from his talented and tireless ECI whom, over the past year he has challenged to become the best ECI ever, glowing with the skills she has taught him. I can't think of a better gift with which to part.
(Okay, actually I did think of a pretty nice gift to add to that, but shhhhh......not til her last day!)

Monday, October 27, 2008

Sunday Link Love

File this under: Topsy's Roost - Stuff you can't believe you didn't know about!

And this one under: Stuff you need in your yard.

Friday, October 24, 2008

I Won!

I won something!

I never win things.

But I won.

I won, I won, I won!

I am appreciated.

Thank you, Debbie and Laurie.

I heart your blog too.


Thursday, October 23, 2008

You Know That Apraxia Diagnosis is True When...

[Or, more appropriately renamed to: 'You Know That Your Child's Therapy is Working When...']

....Bubbles' very special 1:1 ECI was trying to get him to say the word 'spoon'.

She held up the spoon, "What is it?" she asked him, for perhaps the 100th repetition in one month.

He fumbled around with a few sounds, started to get frustrated, and then looked to her and said,
"It stuck. Help me out."

The light? It is burning brightly in my boy.

Wednesday, October 22, 2008

In Which I Offend A Client

In one of the classes I teach, I have a student named Tim. When 2 year old Tim started coming to my class last spring, he was quite a handful. He always needed to hold something in each hand, was unaware of his physical space (causing parents of small children to recoil when he came bouncing by), showed his enthusiasm or displeasure at too much stimulation equally, by shrieking and occasionally barking, and although he wanted to be there very much, was unable to participate in any activity for more than 30 seconds (most activities in my class are approximately one to three minutes long)
About three weeks after meeting them, his mom came to class one day and told me that Tim had just received a PDD-NOS diagnosis. She seemed relieved. I asked her if she was getting ABA and she looked surprised that I would ask.
"No, not yet! But we are trying to get him set up with some aides - we are just starting the process. How do you know about ABA?"
I told her about Bubbles' speech delay (not knowing yet that it was apraxia) and how his behavior had been so over the top as his frustration with language manifested itself, and how ABA was a life saver for our family - he was beginning to respond at that point, to learning compliance, and therefore able to move forward to real articulation exercises.
"It was very hard at first, but now we are converts," I told her. "Push through that 'worse before better' stage and you will be so glad you did!" I added.
She was grateful.
Tim took the summer off and came back to class three weeks ago.
I could not believe the change.
Nobody could.
Tim is the child that wanted to be; the child that was wanting to be heard, played with, danced with, sung to, singing, shaking, participating.
And he is.
I sat next to his mom today in class, and I was teary as I told her how proud I was of Tim and of her, and how incredibly proud she must be of him.
"Isn't it great to be able discover who Tim really can be?" I asked her, as he shared instruments with another child in the circle, excited and grinning and bopping to the song.
"You have no idea," she said, and then her voice broke.
We left it at that and a quick hug.

After class, Tim had scurried off with his mom and his (fabulous) aide, and a little girl picked up a bowl of goldfish crackers. A few mothers from class were lingering, and one of them, an extremely well educated mother I have known for nine years (since she brought her first child, now 11, to my class), mentioned that those crackers were 'Tim's puppy treats'.
This mom, I will call EM (for European Mom), I believed to have a background in special education, but I am not 100% sure. Especially after today.
I was more than a little surprised that she would make such a remark in front of three other mothers, but I replied mildly with, "Those are his motivators."
She continued, "I guess you could call them that. It seems like animal training to me."
I looked at her carefully, and gave her what I believed to be a signal for 'don't go there with me, woman; seriously, just don't!', and apparently I need to perfect that look, because well...she continued...
"I just hate to see children treated like dogs."

{{ ** ZOMG ** }}

(( repeat ))

( x3 )

"Well, EM," I started out gently, "I don't think it is fair to compare Tim to a dog. You were in our class last year and you can see for yourself how different a child he is."
"I agree, but I still think there are other ways of achieving this result. I think it is degrading."
"Degrading? Really?"
"Yes. I think there are other ways." She continued, bravely.
(A part of me wanted so badly to offer my child to her for six months to try her 'other ways', but demand that when she return him, he is speaking perfectly!)
Instead, I replied,
"There may be other ways of achieving this, EM, but let me tell you something: Assimilating into the world of 'typical children' is not inherent to some children. For some, it is a learned behavior. I never had a kid like this before. My son needs to learn to articulate the words which will not come to his mouth, and the very words which he has told his speech therapist lately, are 'stuck'. But, because of a neurological disorder, he needs thousands of repetitions of each sound and each word he learns in order to have a chance to heal or connect those neuropathways while he is still young and his brain is still malleable. In order to get him to practice articulation and communication skills, he has to be compliant - we have to know that he will say something we ask him to say, and through play, can learn these skills. And in order to be compliant at such a young age, he needs motivators. Hugs or crackers, he needs them. Otherwise, this critical period is lost. So for us, ABA has been the pathway to his progress with language. You must remember Tim when he came to us last year - don't you see the change in him?"
She agreed, "Yes of course there is an improvement, I am just saying there are other ways of getting there."

( breathe )

And, reply:
"Well, Tim is learning the social skills that are not inherent to his internal cues - he is learning them and becoming successful in navigating his environment. I think you should be very careful about this subject, as I think it may offend some."

"Of course I agree with you. I am careful, and I don't mean to judge."


"Well, I think that if this conversation was occurring privately, I would not say that you were. But you are."

The End.

(But seriously, there were three other mamas there!)

Monday, October 20, 2008

Pre-IEP Trauma

So, the school psych (who has never met my child in person, ever) and the principal (also superintendent) sent me to observe a preschool which they thought perhaps, may be perfect for my son. Perfect, why?
Perfect because this is (apparently) a preschool for children with communication disorders. I wasn't fooling myself, I knew what realm of behaviors that could imply. But I was hoping it really could offer more than something I had ever seen. It would have to be that good, because I love the preschool Bubbles has been attending since September, and his language has improved impressively in that time.
The school I visited might be an appropriate school for children on the spectrum. With communication issues, such as: using your body to hurl at someone instead of your words to ask for a turn. Not so much on the language issues.
I spent two hours there, and it seems to me that the teachers needed to spend an inordinate amount of time deflecting aggressive behaviors between the students, which leads me to believe that very little teaching can happen. I also did not observe any positive re-enforcers for positive language skills, and this would be a drastic transition for my little guy.
I do believe that this would be great place for my child to learn unacceptable behaviors more than appropriate articulation, which is why I do not wish to send him there. To remove him from his inclusive preschool environment in which he is successful and has attentive teachers, to put him into a special education classroom would not be a step forward.
However, when I stepped into the parking lot of the preschool to discuss this issue with the resource teacher from our school who had joined me on the site visit, she told me a little story of some previous student of hers whose parents would just not listen to the words 'special day class' and the 'severe nature of his deficits', and suggested that I 'sleep on it'. 'It', presumably being, the experience.
So after I 'slept on it' I woke up with swollen eyes from crying all night and feeling REALLY PISSED OFF ABOUT EVERYTHING. And, I had a wedding to attend. With very puffy eyes. Which made everyone else jealous, because they thought I was baked. (The wedding was in Berkeley.) But then the wedding was so damn touching that my puffy eyes looked right in place pretty soon.

ANYway, there is much more to this, of course.
But I have been rather emotionally pre-occupied, and a teensy bit sad, and feeling very alone in this struggle.


Saturday, October 18, 2008

Guess Where I Am?


We are going to a very special wedding.....

Pictures to come!

Wednesday, October 15, 2008

MORE Wordless Wednesday: Health Care for 'Women' (smirk)

Wordless Wednesday

I have never before participated in this blogphad, the WW, but I am not an excluder. Enjoy.

Caption this?

Saturday, October 11, 2008

Get in line for my next GREAT IDEA

I invented something that is going to make me a billionaire.

You will probably want one.

My friend was telling me to go to good vibrations. She said, "Oh those ladies there will just tailor right to your needs!"

I blushed, "You mean they do a fitting or something? Ummm. That sounds embarrassing."

"No, no - they ask you what you like and how you like it and set you RIGHT UP!"

"Ooooh! I know just what I want! I want a vibrator that pours me a glass of wine, tells me I'm super, and then gets me off!"

"I want one of those too. Sign me up for the first 100."

Sunday, October 05, 2008

I Totally Rock. (Or: Sunday link love goes the other way sometimes, baby!)

Oh, this proves that there is a goddess out there who believes in the magic of my super special original equation of:

motherhood+beer+cupcakes+domesticPoseur+deadbaby+bleedingheartliberal+(appreciation of corn vomit, the re-release of native spider monkeys into the city of Phoenix, the word cunt, and other controversial issues) = getting a spotlight on the Houston Chronicle.

HA! SUCK ON THAT, TP! (you know who you are. toilet paper, that's who!)


Oh, and HIGH ALERT, Kelley!


Okay, I can't go away on a Sunday without offering you one more linky.
This is a political joke that even my not-quite three year old got!

Saturday, October 04, 2008

Do You Know the Muffin Man Mamas?

I was so inspired by SJ's creation of the muffins of english toastiness, that I decided to filch her idea take advantage of the (first in six months) rain and (very slight) temperature drop to dive again into the baking and cooking of warm things. I almost consider it a season unto itself.
I have never made english muffins before, but I love to eat them, and I love to make bread, so...what was wrong with me that I had never even thought about making english muffins before? I used this recipe, and I used my kitchenaid (insert love symbol) with the dough hook attachment and it was oh-so-easy.
That part.
The cooking was slightly laborious, as you must pan 'bake' them for ten minutes on each side, but not too bad if you are already in the kitchen making something else. Which I was. I was making crab bisque. Yum. Butter and heavy cream and sherry and ooooooooholynight.......that's all I will say about that right now. Because this is about the english. Muffins, that is.
Did you know that the first english muffins were made from kitchen scraps for the servants? Once the damn elitists upstairs found out about the deliciousness, they insisted on co-opting them into their damn elitist diet and the servants were back to eating livestock eyeballs and family barn kittens.

Another, slightly more civilized description of the regal muffin is possible to find if one looks:

"The English muffin is round and made from a soft yeast-leavened dough enriched with milk and butter. It is usually cooked on a griddle, which gives it a flat, golden-brown top and bottom, and a white band around the waste and a light, spongy interior...This method appears as early as 1747 and was recommended by Hannah Glasse."
---Oxford Companion to Food, Alan Davidson [Oxford University Press:Oxford] 1999

At any rate, they are yummy. And easy. Problem was, after they were all made and mmmmm waiting to be slathered with butter and jam, I searched my fridge and freezer and ACK! We are indeed, out of jam. A dire situation, but a good time to prompt me back to the strawberry farm as soon as tomorrow to fill our freezer full of jammy goodness. And yours too, because I love to share.
Turns out it wasn't that big of a problem, though. They are still yummy. Hopefully I can make some last until we make the jam, but I seriously doubt it. I already gave away one bag to a friend. Because hey - yum. Share the love. I am considering going to my favorite not-so-secret kitchen outlet buy myself a big old two burner griddle though, and make it even easier to do this again.

I do not have a biscuit cutter. I am a culinary suck.

But I do have Nana's 100 year old rolling pin and a handy blue lowball, the largest diameter glass I could find.

And it turns out that works just fine.
Don't forget the cornmeal.

Rising nicely in my dirty old oven.

I made at least 21 from the recipe,
but some of them got gobbled up right away.

My friends were very happy to receive a bag.
Hmmm... you know what a perfect gift would be? A bag of these and a jar of the homemade jam. Get the child labor going and get the kiddies to make some homemade butter and you will put even Martha to shame.

Friday, October 03, 2008

The Assessment: Part 2

Well, the numbers are in.
No, I am not talking about the debate.

I am talking about The Assessment. The one which was done three weeks ago and the results of which just graced my presence.

The boy? He has The Apraxia.
In other words: Teh boy don make no sens.

Okay, that's not entirely true - just a family joke. He makes sense to us, sometimes. But perhaps only six people he knows can actually understand him at all...and still....just sometimes. His family, his speech therapist, and two highly gifted friends of mine who remain my very best friends because they claim to hear (and understand!) him say complicated things which are usually run together very fast.

One indicator of apraxia is a large discrepancy between receptive and expressive language skills. As it became more and more apparent to me that this is what his delay really was, I was told repeatedly, "But not the only indicator! You can't go just on that!"
True enough, but Bubbles meets nearly all of the criteria used to diagnose apraxia, so I have been more or less convinced of this possibility being a reality for the past few months.

And then came the report.

(sucks breath in)

Start internal dialogue: Ooooookay. This is fine. You knew this was the reality!
But ZOMFG my baybeeee. He's got a NEUROLOGICAL ISSUE.
Oh my god listen to you - we have already gone through this - it's a neuro-processing disorder, okay? It's not a fucking brain tumor. His brain is malleable. With the right help he will learn to use that part of his brain and, albeit, with challenges, he will be able to communicate!
But OMG what about the kids who never become verbal communicators? What if someone suggests alternative communication devices to us?
Settle down, woman! You got him into speech at two yearsold! He is already communicating verbally. He shows signs of improvement and the desire to be challenged and to learn to communicate with his peers!
But what if......
People will think he's retar- mentally challenged! The world is gonna shit on my baybeeeee!!!
Shut up. Seriously, you are crying now and that is so emo-over the top. I cannot believe you are reacting this way. How many times did you say yourself you knew it was apraxia?
Waaaaahhhhhhhhhh. Oh, sniff sniff, YOU shut up. I can have one fucking moment to grieve and be fearful, so stuff it.

That was that.
I am now far more composed than I was one hour ago. Far more.

Really. I am okay. He's going to be okay. Well, let me get back to you on that part specifically, because there are many variables, the biggest one right now being the school district and what they will offer him for speech therapy at his IEP (which will occur in the next four weeks, before he turns three).
But he will be okay. He also has the personality to compensate for his funny sounding language. I just hope that it can't be crushed by his frustration.
His receptive language skills ranked in the 63rd percentile, which means that he actually tested slightly above what is considered 'normal' for his age range.
His expressive language skills tested in the 16th percentile; a significant delay and a substantial discrepancy between the two skills, which generally develop in a harmonious partnership.
His expressive language is developmentally appropriate for a 26 month old.
When I think back on the behavior issues with which we were dealing, and the tantrums...and I feel so sad for him. How frustrated he must have felt, and no wonder we were all experiencing over-the-top terrorist two year old.

In the past two months, Bubbles has turned his first (rounded) corner. He now volunteers the use of complete sentences: 'I want shoes off. Help, please.'
He has finally suddenly started to narrate things (without being prompted) in our environment, especially when driving around: 'Oooohhh water, ocean BIRDS! YEAH BIRDS! Birds fly fly fly fly! Mama! Fire truck! The bus, the BUS THE BUS!!! Nother cars! I want juice box, pleeeeeeeeease!'
Of course, only some of it comes out as completely intelligible, but he is actually practicing words he already knows and has been working hard to learn, so most of it is somewhat clear. He's not trying to say things like: 'Look, Mama - another Obama sign! HAHA that rhymes! Can we please stop for jamba juice??' ...or any of the other things he hears his sister crowing as we roll along!

So, there's the update.
A large dose of reality, plus a touch of sadness and fear, with a side of hope.

Wednesday, October 01, 2008

FUNDAMENTALLY, I have to mention something....

There's a new buzzword for the McCain campaign.

First we heard from GW that the fundamentals of our economy were strong.

Now, in an interview with the editorial board of the Des Moines Register, McCain repeatedly
(and very angrily) expresses how he 'fundamentally disagrees' with the implication that SP is inexperienced and he fundamentally disagrees that the American people don't like her. (I guess he also fundamentally disagrees with actual polls).


Did you hear the dogwhistle? Everytime I hear that word *fundamental* on the news, I imagine someone at the McCampaign claps their hands together and claims to have reclaimed another wayward liberal Christian, diverted on their path by visions of change, inclusion, faith, and love.

They are flailing, they need something...I get that, I really do.

But it just seems like another one of the talking points cheap trick distraction methods (LOOK, A PUPPY!) that the uber-conservatives have used to hijacked Christianity. This isn't news to people like my mother, and many good friends who have watched in jaw-dropping horror as 'their religion' has been abducted and absorbed into the conservative vision, re-invented and spewed back out in the form of Fundamentalism, Evangelism, and supremacy.
A political party religion which preaches intolerance, judgment, exclusion, racism, ignorance, hatred, fear.
While I know this is more prevalent in other parts of the country than this (thankfully) liberal bubble surrounding us (called: our region), even local friends who happen to also practice Christianity are feeling this separation of church and church. I wonder if that has anything to do with the frequent infusions of politics into faith. Hmmmm.....

Oh, and let us not forget how they have also managed to own 'life'! That is impressive.

If only a 'culture of life' could be further embraced by the American people.

Seriously. WTF IS THAT?

Tick, tick, tick....can you hear it?

I may be looking forward to the debate this evening just a teensy bit too much.

And now, I am new and improved...with twice the amount of spite!